Never Give Up.......Motor Neurone Disease.

As was before, so will be

2008-08-09T11:52:00.002+12:00

Greetings to those who knew Robert personally, Greetings to those who's lives he touched in some way, Greetings to those who found strength and gained a insight into a life shared by family and reluctantly shared by a cruel Mistress known as Motor Neurone Disease.

My name is John, Robert's oldest son, and I thought it high time that I put a little post on here, my brother and I are going to keep this blog running, partly for prosperity of memories and the hopes and aspirations of a man who went before his time.

This is a short post, I am somewhat a simple man, not eloquent with words, but I will say this;

Dad was not a overly religious man, he believed in something, I don't think he bothered much with exactly which maker he was meeting in the end, it was the family around him that comforted him more.

I have my religious views so all I will say this, a stanza out of the Havamal, something for everyone to ponder, this sums up what I, and a lot of people, think of my father

Cattle die, kindred die;

Every man is mortal;

But the good name never dies

Of one who has done well.

Dad did well, he fought right till the bittersweet end, such a relief to be there when he took his last breath, but such sadness also, sadness that he was taken too soon from us all.

Love you Dad, see you again some day.

Far Med Gudane!

The final journey ROBERT ANDREW COUTTS 24.03.1942 - 01.08.2008

2008-08-06T09:37:00.008+12:00

ROBERT ANDREW COUTTS passed peacefully on the 1st August at 2:43 am at Te Omanga Hospice in the comfort of family and loved ones.

On behalf of the Coutts family: Jan, my brother John and our families i would like to extend our thanks and gratitude to all those who cared for Robert, and also to those who new him as a good friend. And thank you to Brian Ross for the lovely ceremony held for Robert.

The week that has just passed has been one of sadness, but also one of realisation that the journey we call life has its twists and turns, we reflect on the good times to crack a smile and bring ourselves some peace.
To have those wonderful memories of a remarkable man, a man who even though was given a sentence of time on his life was never bitter, never angry, who always stayed positive, a man who never worried about his own self, but of the feelings of others who supported him.

We will forever be thinking of you Dad, rest well and will see you again someday :-)

From the Dominion Post August 6th 2008

COUTTS, Robert Andrew - On August 1, 2008, peacefully at te Omanga Hospice, surrounded by family; aged 66 years. Adored husband of Jan and much loved father and father in-law of John & Tania and Phil & Tamlyn.Treasured poppa of Shianne, Danielle and Isaiah; and granddad of Kaleb, L'Vcaean (Luke), John-mark and Unborn Bubby.
In Lieu of flowers, donations to the wellington SPCA would be appreciated and may be posted to PO Box 7069, Wellington.
In keeping with Robert's wishes, a private cremation has been held.
All messages to 74 Clouston Park Road, Upper Hutt

Update : Robert Coutts

2008-07-31T10:53:00.004+12:00

Hello, my name is Phillip coutts, youngest son of Robert & Jan Coutts.
I am writing to update everyone on dads condition, also a little bit about him from the perspective of a son.

Robert is still currently in Te Omanga Hospice, he has been there for about a month now, it was quite a shock to us all for this to happen, as he was in good spirits, and after going to day care he never came home. He fell ill with a lung infection, to which he took a heck of a blow, with the care of the hospice staff he has come right, infection has gone.
But in the long run he has suffered a bit, as his condition has detereated, breathing has become more difficult and is virtually bed bound.
Taking all this into account, guess what, his spirits are still high, and is looking forward to comming home HOPEFULLY if all goes well.
I will try to update his blog every few days as we know more.

As for me, it has been hard to watch over the years, seeing my dad, a person who i look up to for guidence and strength, go through what he has been through and is yet still to do so.
Robert is a good man, always kind and caring with not a bad word to say about anyone, this is somthing i try to follow, all be it not very well, but i do try. As i am a husband and a dad myself with three boys (picture of them playing with the boxes)Kaleb, L'vcaean(luke) and john-mark, along with my wife Tamlyn, i do try and follow in his footsteps, to treat my boys with the respect and love in which he gave my brother and I, also to be caring and always loving to my wife as he has been to Jan.

Reading through his blog and hearing what others have to say about him is up lifting, i am pleased to see he has touched so many people around the world, given people hope and also advice, it is all very humbling. We do plan to keep this blog running and keep intouch with everyone that he has written to.

We wish dad all the best and keep fighting NEVER GIVE UP

This time ???

2008-07-16T21:18:00.002+12:00

I am in Te Omanga Hospice and have been for a fortnight....I would to say a hugh thank you to all of the Doctors and Nurses there

TO BE CONTINUED....

A new phase

2008-06-26T17:49:00.006+12:00

It is time to laugh out loud and to say “bring on the next round “. I have survived and passed the sentence of time ( 2 ½ years ) placed on my body . But at what cost . . . I am now more or less chair bound ( lazy boy ) with my laptop beside me on a small table in the lounge. I find walking with the walking frame very hard work and tiring.
Even just the act of being showed can leave me weak and breathless . That includes getting in and out of bed . Any thing that requires too much energy is out of the question . . Speech is now a major problem and solid food , well , can’t remember when I last ‘ had a meal ‘. oh for a good steak, medium rare with well done chip’s . I laugh to myself. . . . .
The body in general has gotten a lot weaker . Loss of body muscle is plain to see . Sleeping is also a problem in that having no body fat over my tailbone makes it difficult lying down as this is a pressure point and because the body is weak I find it hard to turn on to my side .
Right about now you must be thinking how do I survive each day and the answer is because I have to , not only for myself but for those around me . Life is some thing we all take for granted and we shouldn’t . when you have to fight for it then you know , despite your condition , its worth the hour by hour effort on your part .
Now I have gotten all that out of the way how am I today . At the moment I am feeling good and doing this entry for my blog will be letting people know I am still around . I am using a program called “Viking Pro 3” to type all this in and one finger .
ALS/MND affects all those with it differently and so we each have our own path to follow , our own ups and downs , mentally and physically . I like to think that my condition is just maybe another phase in my life . . . . . .

Stress....

2008-06-09T22:09:00.001+12:00

What is it that brings us altogether in times of stress. In a time when family life means so much to us. A time when unity of the family unit becomes so important. I believe it is love.
But having said that sometimes it can have the reverse effect . When a person in your circle of life is diagnosed with a terminal illness it is that bond, that love off and for the person concerned that will bring family members together. In most cases. Sometimes the diagnoses will drive those family members apart..
And you will find that people in general, if aware of the circumstances surrounding the person concerned will, in effect, become involved with the looking after and/or providing of care for that person so diagnosed.
I know that my thoughts on ALS/MND are open to all and sundry and I believe that to be somewhat radical. I am very positive in my belief that having contracted this disease and knowing that I can not reverse the process that there is only one other thing to do and that is to get on with life as best I can. To be visible and show to your loved ones that despite your condition, your inability to maybe walk or talk or even eat real food that inside this person there is still a beating heart, that there is still blood flowing through my veins, that I can still laugh and cry and that I am still capable of taking part in family life if only by being in the same room.
I am enjoying watching my youngest grandson who has in the last two days started walking. I wonder what the future has in store for him and all children worldwide. Will they have the benefits of modern medical science and live in a world free of crippling diseases . I would like to think that maybe, just maybe that will be possible….
Last week while at day care I made with some help a birthday card for my wife Jan and seeing her reaction on opening it was worth all the effort on my part.

Grandchildren

2008-05-30T22:37:00.005+12:00

Photo of the three boys busy with cardboard boxes..who needs expensive toys.......

To a person in my position a child can evoke a whole range of emotions. When that child is a grandchild and you are able to see him or her on a daily basis then life becomes enjoyable. We, Jan and I are lucky enough to have not one but three grandsons ranging in age from almost five, two years and the youngest of eleven months. Their names are Kaleb, Luke and John Mark.
We have the pleasure of their company five afternoons a week when Jan picks them up from day care. When they come in the door to where I am there are mixed reactions. The eldest, Kaleb, heads for the toys. Luke has only one objective in mind, food, and heads for the fridge and the baby of the three is quite happy to bumble around on the floor. He is almost walking and it is delightful to see him holding onto his Nana’s hand and taking those first tentative steps forward .
It is only a short while later and the lounge floor has become a disaster area with boys, toys and empty cardboard boxes. Books are found in quick succession for Nana to read to the two oldest boys while baby has decided to investigate the drawer handles of the china cabinet.
John Mark see’s Nana with a bottle and makes a bee line for her moving as fast as he can on all fours. He can now hold the bottle himself while resting on Nana.
It is a constant joy watching the boys interacting with each other. A large cardboard box has been played with for over a week, being used as a slide, a tunnel and something to play in.
Kaleb and Luke are now on the floor and John Mark joins in the rough and tumble. Their parents arrive and a short while later after hugs and kisses calm settles into our lounge as the children head home with Mum and Dad.
Where would we be without children to love. Be it one child or one of many a child can bring peace, love, joy and a calmness of mind.

Children the world over can in many instances regardless of where they live bring stability to a family. To watch a child's face at such times like Christmas and at birthdays is a landmark of family life. They also have the remarkable ability to accept at face value the fact that someone is sick.
Children can teach us adults so many things about life…..

Bonus

2008-05-28T21:13:00.002+12:00

When we approach the cross road of life some of us are in the position of knowing, all be it approximately, of when that time will be. The two and a half years that I was given will be the middle of next month and I fully intend to exceed that period of time.
I have met, via the internet, some remarkable people and count myself privileged to have made contact with them. And I refer not only to people with ALS/MND but to those of you who are our hands, eyes and ears. Without your help, your dedication and caring, be it personal or professional, people like me would be in dia straits. And it is also to our partners/spouses who in many instances put their own medical needs behind them that we must thank.
A person with a disability needing support and help should be able to access that help twenty four hours a day, regardless of their location in this world. But we all know that this is not the case.
To anyone diagnosed with ALS/MND you ask why !. And the answer is simply, we don’t know why. Some of you may question ‘higher powers’ but to most of us, like myself, there is no way that I can change what mother nature has done to me ,so, I accept the condition ( knowing the ultimate outcome ) and get on with the job of living.
Alright, I can’t walk anymore, eating is a problem, I have moments when my breathing is compromised by shortness of breath, hands are becoming more difficult to use, ie, need help dressing and undressing, bathing etc..
Using the computer is also harder to do. As of this moment I am a one finger person. And I am coping. Another problem now is that the weather has got so much colder and keeping warm has become a priority.
I have every reason to feel sorry for myself, but my disability, condition, call it what you will, is minor. There are other people out there on this planet who are far worse of than what I am and my heart goes out to them.
I will give an example … two men here in NZ in the last eighteen months have had their lives ripped apart by loosing limbs in recycling machines. What these men have had to go through since is mind blowing so you see, I have nothing to complain about.
I continue to take every day as it comes as a bonus …..

Bipap... pro's and con's

2008-05-16T22:13:00.004+12:00

The last couple of months has been interesting in the extreme what with having a cold and generally feeling somewhat ‘flat’ and then having to undergo chest x-ray, lung function tests and blood been taken to check for oxygen levels etc. Lung tests I couldn't’t do simply because I didn’t have enough puff to blow into all the different tubes. And my medical team want me to spend a night at the sleep clinic to see if I need a ‘Bi-pap’ machine to help me sleep at night.
At time of writing this my sleeping pattern is OK…I don’t have any trouble with breathing while asleep so what the heck…
The question I would like to ask those of you who have such a machine is how do you cope with it and more to the point how do your spouses or partners cope. What is considered a good night when using a Bi-pap and and are there side affects.
The next question I want to ask is do I go ahead with it. I (we) need to make a decision sometime soon…. In other words what are the pro’s and con’s of using a Bi-pap.
I know that one affect is to help give a quality of life to an individual with breathing problems.
UPDATE ON MY CONDITION..
I have talked about the Bipap… I haven’t eaten solid food for I don’t know how long now. My main diet is Fortisip and I try to average four a day, I should really try for six.
I am still able to stand upright and walk with ever increasing difficulty so not bed bound yet. Dressing I need help with. And my speech is becoming harder to hear so now have a speech amplifier which I can wear at home and when going out.
I spend most of my day now on my electric lazy-boy chair watching TV or resting. I have had the odd person email asking if I am Ok due to the long gaps in my blog so am trying to remedy that now.
Recognition of our disease and all of the conditions that go with it is still not understood by the majority of New Zealanders and that I am sorry to say includes the medical fraternity.
Preconception of our condition leaves a lot to be desired . So often do people associate MND/ALS with MS and they are two very different ailments.
TO BE CONTINUED…

A rest......

2008-04-20T15:49:00.003+12:00

Well, the old body aint what it used to be, thats for sure.. last thursday I came to Te Omanga Hospice for some respite care where the staff just can not do enough for you. So,a huge thank you to them.

To continue.......

Sixty six years and still going

2008-03-25T14:13:00.006+13:00

Well, here I am on a slightly overcast day in sunny New Plymouth. I am sitting propped up on the bed with my laptop on a tray deciding what to say... On the 24th I turned 66 ( wow, that's really old ) and was shouted out to an evening meal with my wife, son John and family.
The preceding two days had been interesting. We had to be at Wellington Airport by 7am so I could be processed and be ready to be loaded onto the plane first. We had left our car with a cousin of Jan's not far from the Airport to avoid having to pay long term parking fee's.
Having been dropped at the airport and with our suitcase checked in we made our way down to gate 12. A forklift with a special cage was waiting on the tarmac along with an isle chair to which I transfered to.

The family took me out the following nite to cellebrate my birthday and this t-shirt was given to me by the staff... we thought it was really great and caused much laughter. oh.. if only I could I said with a smile..

Still here....

2008-03-01T22:24:00.002+13:00

Hi folks, I’m still here. Just not as active as I have been.
Update on my condition… Still have the odd spot of breathing problem, you know, trying to get that extra lungful of air. And this can happen at any time of the day or night.
And because my backside is now so small ( muscle wastage ) my tailbone is the first thing I feel when I sit down.
Eating becoming more of a problem as there are now so many items of food that just won’t go past the back of my throat. Sticking a finger in to move the food around is not an option as I have a bad gag reflex. I find now that even having a cup of tea or coffee I sometimes have to make myself put the cup to my mouth and force myself to have a drink. It is all very time consuming. Thank goodness for the peg…

Give and take

2008-01-26T17:20:00.000+13:00

What am I…I am a person approaching the golden age of my life where I can sit back and watch the world flow past. A world full of marvels, new and old. A world where nothing seems impossible and every day gives us something else to speculate on.
It won’t be long before mankind heads out to the far reaches of outer space or have cities on the ocean bottom. We will have learnt to co-exist with other life forms and benefit from their knowledge with regard to our many medical problems.
Science fiction, well, maybe. But we can dream and dreaming is I think a prerequisite of anyone reaching that milestone in their golden years. Many years have gone past and I don’t regret any of them.
I can watch with interest the grandchildren growing up in a world that is changing every day and maybe not for the better. We still have our wars, religious persecution, hate, starvation and the general hardship that so many
People have had to bear. But out of this in little pockets around the world you will find wonder, love, and the will to live as normal a life as possible .
We give with one hand and take with the other.. that is our nature. And so it is with me. I have given of myself to workmates, friends and family all my life and now is the time to take.
We watch as life strides past us heading off along the road that we, because of our condition, must follow. To anyone with ALS/MND there comes a time when the very nature of what we have dictates how we are to spend the remaining months or years. But if you are a fighter you may be able to change if ever so slightly the conditions imposed on you.
If you are a young mother with small children then life must of necessity be hard to bear but that is where family come in. And to have the support of a spouse or partner makes your journey through the time remaining so important .
Everyone deserves to reach that golden age including us so as I reach forward and gather about me all the things that mean so much my thoughts go out to those of you heading along the same path as myself.
Don’t look down but keep your gaze focused ahead of you and take what ever is put in your way as just one more gate to open on this, your road to life….

Well balanced

2008-01-12T22:29:00.000+13:00

We are a complex , multifunctional creature. We are a race of people, known to be resourceful in certain fields such as medicine but it is in that very same department where we come unstuck.
I like to think that the human body is the epitome of what mother nature can do. It is a pity also that in this perfect example of a well balanced machine of blood and bone, muscle and tendons that an imperfection can occur and it is starting to do so with alarming speed around the world.
I am talking about ALS/MND and the fact that to date there is no known cure for people with this condition. It is also a fact of life that those of us with it ( well, most of us ) get on with living as best we can .
Life is hard enough as it is without any of us having to fight for it but that is what you and I are doing, day by day, hour by hour in some cases. Every day I open my eyes is a reason for me to say ‘thank you’, get up and enjoy whatever comes my way.
Getting out in my power wheelchair is a real buzz and meeting up with friends or going to visit some ones place can be very rewarding. You learn to regulate how much you can do while out so as not to be too tired by the time you get home again.
Showing people that we can take part in every day affairs, that we can and do go into restaurants /movie theatres and use public transport in our chairs and also go shopping. That just because we are in a wheelchair does not mean that we can not talk or think for ourselves
I also find that help is never far away and if you are a person who is not afraid to accept help then do so, it makes life so much easier.
Another great thing is that sometimes out of the blue your day is made better by a surprise in the mail. This happened to me today when I received a small parcel. On opening it we found that there was a musical CD from Jim Mora, a well known presenter on Radio New Zealand. Jim is a talk back host and is also involved in a TV program called ‘Mucking in’.
It is the little things like this that mean so much. A smile, a laugh, its not much to ask for and if you can reciprocate then the effect is two fold.

Looking forward....

2008-01-04T22:01:00.000+13:00

2008 and beyond….

Christmas has been and gone and now we look forward to the forthcoming New Year… What will it bring. We look back at last year and try to think of all the positive things that took place around us.
The world itself has not changed in any way with bombings, murder and general mayhem but we, as a race can look at ourselves and know that out of this madness there is compassion, goodness and the willingness for people to help each other in time of need.
With ALS/MND on the increase we have to be seen to be heard but it is the making ourselves visible which is the hard part. The other aspect of this is funding for research, equipment and all that goes into finding a cure for this terrible condition that you and I share.
The year ahead for me will bring many challenges. Food in general is going to be very interesting as I am finding out already. I am so pleased that I went ahead and had the peg inserted. Walking with the frame is getting harder by the week and I now have an electric ‘lazy-boy’ as I was finding it hard to get out of the manual one.
Sleeping is also becoming something to look at as one night I have frozen feet and the next that hot I don’t know what to do with them. So many little things happening with my body that separately they are not noticed but lump them all together and I can feel the difference.
But my attitude, my feeling of ‘wellness’ within myself, is still the same now as it was before. I am still me and will continue to be positive, not only for myself but for those around me and for all of you around the world who share this condition with me.
I may be down but most certainly not out, not by a long shot.

Christmas wishes....

2007-12-17T20:57:00.000+13:00

Christmas comes but once a year…

This is a time for peace, friendship, harmony, companionship and also a time to be able to spend it with family and friends. Christmas is celebrated right round the world and has the ability to bring together people of different races and religions.
It is primarily a time of year for children to see and feel the wonder of a tradition that has spanned many hundreds of years. It has also been known to bring to a halt two countries at war with each other for a game of football in no-mans land. After the game was over the fighting continued.
Christmas is the time we bring out the decorations and dress up a tree, be it artificial or real with coloured balls, bells and streamers. It is a time for people to put aside their differences, their feelings of right or wrong and meet with open hearts those members of their families who have a disability and are unable to take an active part in the festivities.
It is a time to smile, laugh, sing and remember times gone past. A time to look back and think of all those who have helped you.
I would like to say thank you to all the carers, world wide who have made not only my life so much easier to bear but to all of us suffering from a disability, be it terminal or not.

I wish you all a Merry Christmas…….

Xmas

2007-12-08T23:11:00.000+13:00

Hi everyone. Just a quick note to say I am feeling well. Wound has been healing and is looking good. I have been fed through the peg several times and I find it fascinating. So much easier.

I would also like to take this time to wish everyone a "Merry Christmas" and hope that family and friends enjoy the time they have together...... Robert A Coutts

The "PEG"

2007-12-04T23:06:00.000+13:00

A new stage in my life starts…

Wheeled into the operating theatre about 11am Tuesday morning 27th November. Twenty minutes later its all over and with Jan walking beside me I am taken up to the medical ward where as it turns out I am to spend the next two and a half days .
The procedure to insert the peg had gone well but shortly after being taken to the ward I was allowed to have something to eat. This was too soon after the procedure and my body reacted by going into spasms of intense pain. Later that day I was allowed to partake of the evening meal and within the space of half an hour the pain returned. A close eye was keep on me during the night with the peg being flushed out every four hours.
The same story followed with breakfast .( most of which I was unable to eat ,so I was given a Fortisip via the peg.) Jan turned up about the same time as the pain returned. So, I was looking forward to lunch which duly turned up. Having eaten and had a drink I needed to go to the bathroom so was moved into the appropriate chair and wheeled in. Jan had to leave at this stage which was fine but within half an hour I had the most intense pain I have ever had in my life. ( if this is anything like having a baby I don't want any part of it, I was thinking)
A shot of Morphine soon had that under control. And again that night some more pain.
I was keep in two days and by the morning of the third was feeling much better. Jan took me back home that afternoon.
It is now a week since peg was put in and have had a few restless nights as body was sore but the sleeping is improving. Walking with the frame has become so much slower as trying to not put pressure on to the wound site.
Do I have any regrets about having the peg put in….NO. I have read plenty of stories for and against having a peg but it all comes down to the individual concerned. Sure I had a lot of pain and wound is still sore ( and slightly inflamed but that is being monitored ) but I went into this with my eyes wide open and still believe that in the long run it can only help me with quality of life and a certain independence.

So, anyone with ALS/MND contemplating having a peg put in all I can say is go for it while you can. It may become your life line....

FOOT NOTE
I want to say thank you to all the staff at Lower Hutt Hospital , you were fantastic in the way you cared for me....

Focus on life..

2007-11-25T11:08:00.000+13:00

Focus…

I sit back and focus on what has been and is happening to me at this moment in time. My condition is slowly and steadily marching along a predefined path with little changes here and there. Most of those changes are noticed by me on an almost weekly basis and I take them in my stride ( no pun intended ) and get on with life.
To be living with this illness you have ( I think ) to be able to focus, not only on the long road ahead but the short falls just in front of you. To have some belief and trust in, not only of those helping you, but being able to help yourself.
We all put our bodies on the line, so to speak, in an almost daily ritual of stress and strain and somewhere along the line, right around the world, something will cause some of our bodies to stop working on a normal basis. That something is off course ALS/MND. Why, we don’t know.
So, our will to focus starts early with most of us and if we are lucky we can carry that will, that wanting to stay one step ahead, to try as best as our bodies will let us, to lead a life, if somewhat restrained, as normal as possible.
So what do we ( I ) focus on…staying alive is number one. To be able to hold my bowl of wheatbix in the morning followed by my cup of tea. To roll over in bed. To get up from the computer and grab hold of my walking frame. This all involves focus…to move from my lazy boy to the frame. To transfer from the mobile wheelchair to the front seat of the car, that is a lot of focus. To get through the day without major upsets.
Such a small word but when you have ALS/MND it can become the center of your universe. Food of course, as our condition continues to deteriorate, becomes a focal point of prime importance and the focus centres on whether or not you are able to eat and drink as you had previously. Sadly that is not the case with a lot of people suffering from ALS/MND.
It is stated that women can multi-task where as the poor male can only focus on one thing at a time. I have to laugh to myself here as that statement is in all probability quiet true.
Focus on one’s family is of course paramount and especially if you have young children. How do you tell them what is happening to you. How do you explain that you will be leaving them. This is where your families come into the picture. Because the focus is not all one way. And I think if you are a solo parent diagnosed with ALS/MND it must be so much harder without the support of a partner or spouse .
Older children these days seem to take things in their stride and are able to cope a lot better but they too will come to realize the importance of your being in a situation where being part of a close knit unit will not only help them but you as well.
Living with ALS/MND is a ‘bummer’ to put it mildly and so everyday the task of staying that one step ahead, to be in focus , is very important to us all. As I sit here at my computer my focus is on the keypad, to try and not hit the wrong keys, to make sure that I am able to use the mouse without to much trouble.
Most people don’t even realize that they use this ability of their’s, to focus on what they are doing and its not until you are in a position, with a disability, where the importance of having to focus becomes a key part of your life.
So, where to from here….my focus now of course is getting the ’peg’ put in and to see how my body reacts. In the long run its going to help me stay around a little bit longer. And that my friends is what I want out of life. To be part of the family and community, get out into world and give old man ALS/MND a run for his money………

Quote…Do not linger to gather flowers to keep them, but walk on, for flowers will keep themselves blooming all your way.
Rabindranath Tagore ( 1861-1941 )

Still here.....

2007-11-21T22:13:00.000+13:00

Hi folks...
Yes, I am still here. Must appoligize for lack of entries this month. Working on one now, should be posted here in the next few days.
I go into Hospital 27th this month to have my 'peg' fitted. Food in general is becoming a bit of a problem. Can still move inside with walking frame but getting slower. Breathing problem has settled down thank goodness.
Have had four days up in New Plymouth with our oldest son and his family. Wish I could buy a new backside I say with much laughter.

Pride, at what cost..

2007-10-27T15:43:00.000+13:00

What is the major thing that we all take for granted. LIFE is what it is. It is like a children’s playground with swings and slides, turntables and ropes. All the ups and downs of playing on swings etc is what made life go round for us.
We have all taken a tumble at some stage from such equipment and brushed it off as no consequence, but, like a turntable, what goes round comes round for some of us.
And so it is with ALS/MND. There are those of us who are able to brush it to one side and get on with life as best we can but when the slide comes down too fast and hard then that is where life becomes so much harder to bear and our pride takes a fall.
We cope with the everyday tasks of living but at a price. Pride is the thing that most people find difficult when it affects them personally. And with pride there is also dignity. If we can handle these two aspects of life then we are coping alright.
The other thing to remember is that with pride there is also age. Pride and age go hand in hand and it is a hard ask when you have to look to those around you, people you have known all your life, and say to them, “can you please cut my meat” or “ I need to go to the toilet” or the 1001 other things you have to do, to maintain and keep in place your pride, and know that age is no barrier in this game of life.
With ALS/MND there is no barrier. It can strike at any time or any place. Age and sex are now of no consequence ( people are now being diagnosed a lot younger) and it makes no difference to your community standing or place in society.
We are a diverse race of people and every day it seems like there is a new illness to try and combat and we do the best we can with what we have. But what we have is not enough in some cases and this applies especially to those with ALS/MND…
As far as I am concerned I am taking it in my stride ( is that putting one foot in front of the other he says with much laughter, oh how I wish I could.) and though the daily task of living is getting ever so slightly more difficult I am not letting the negative aspects of my condition get me down. I cannot stress enough that anyone with ALS/MND try, as hard as they can, to hold onto life and pride with both hands ( and I know that this will be difficult with a lot of people ) and let the world know that you are there through being positive and enjoying life with family and friends.
Jan and I are now looking at ways of bringing attention to Motor Neurone Disease. Off making aware that there are a growing number of people in New Zealand being diagnosed almost daily with this disease and of finding ways to help or get help where ever we can. ……..

Photos

2007-10-21T21:05:00.001+13:00

This is something that I have not done in years.. Jan and I out for another walk and we took our kites with us......

Two shots of a sunset late one night a month or so ago....

Kick in the teeth

2007-10-19T17:04:00.000+13:00

Life for me keeps on going on despite having breathing problems and loosing the ability to walk unaided. Now in a situation where we ( Jan and I ) can get out side and go for walks, me in my ‘Pronto’ wheelchair and Jan either walking or riding her bike, where bathing is now no longer a chore and the everyday aspects of living in general is looking good.
19/10/07
With snow on the mountain range in the background and a warm breeze blowing against our faces we took advantage of a very nice morning to get out for a walk in the sunlight. There is nothing better than feeling the fresh air and admiring all the flowering trees and listening to the bird life. We also took time out this afternoon to sit in the sun, really great.
It is now one year and ten months since being diagnosed and I will be the first one to admit that my physical condition has gone downhill, but, and I stress here, that condition has not stopped me from being who I am and enjoying life to the fullest. I find that the small of my back gets very sore and really feel it when I try to get into or out of a chair/lazy-boy.
Sure, I have the operation for having a ‘PEG’ fitted to enable me to supplement my food intake coming up and I don’t see that not happening. We all have to eat and drink in one way or another. And we are still finding out what I can and can not eat.
I am still going to ‘Day Care’ at the Hospice and enjoying it. I have discovered that I have an artistic ability through taking part in Day Care activities even with hands that have a mind of their own. Trying to paint a flower with the brush wandering all over the place tends to make one frustrated but with perseverance and a good deal of determination I won out.
To anyone wanting a good read there is a book called ‘Loosing my voice’ written by a woman named Barbara Williams ( elder daughter of the late Sir Robert Muldoon ) who has ALS/MND. I am about halfway through it and find it very well done. Her story gives an insight into the everyday problems of someone with this disease and how they as an individual deal with it. I admire her spirit. Go for it Barbara.....
What do I do with my day.. I spend a lot more time on my lazy-boy chair and will often watch TV and try to spend at least part of the day on my lap-top. There was a time when I would have been on the computer for hours on end doing research into our family trees but life has changed that option for me as I find it more and more difficult to use the mouse.
Using the laptop will be made easier for me soon but more on that in a few weeks.
I find that as the body weakens it needs more rest. The amount of energy required to do even the most simple action like crossing the room with my walking frame demands that I either sit or lie down.
I no longer try to make cups of coffee or tea, just too much effort. The only think I really find hard to accept is the fact that I have to sit back and watch my wife do everything in and around the house as I no longer have the strength to help, in any way… that is REALLY HARD.
My only strength is staying alive and being a part of this family. At the end of the day I can still laugh at ‘life’ and say, “ Hey, is that the best you can do. I need to be around a good while longer for all those people out there in this crazy world of ours who require, if not a physical help, but help with dealing with their own form of ALS/MND in a one to one situation via the internet”.
So, I take each and every day as a bonus and give of my body with both hands my heart and soul to all of you with ALS/MND and hope that my being positive will help you to hold on to life and give ALS/MND a good kick in the teeth.

I try not to let my condition hinder me in so far as enjoying what I have left….

Moving house

2007-10-03T21:20:00.000+13:00

On September 28th my quality of life changed when I and Jan moved into another house. When you can not walk and your legs do not want to bend at the knees the bath as shown in the photo at left was rapidly turning into a nightmare for me.

Having tried to get a house through a Government Agency with a disability shower and after many months of nothing happening we decided to go public with our story.

Photo of new 'Disability shower'...

Being bathed now is a breeze and the feeling of freedom in the bathroom is really great. Having someone who will come in five days a week ( at this stage ) and take from me the daily stress and hassle of bathing and give to me a new meaning to the 'Quality of life' has to be felt to be believed.
There is no loss of dignity in a situation like this and you are treated with the up most respect. Having being able up until a couple of months ago to do my own bathing I took on board the fact that there are agencies who will provide all the care and attention to your own personal care..

UPDATE...

Over the last few weeks have been having 'breathing' problems, ie, trying to take in extra gulps of air. To help ease this I am taking a 'diluted' mixture of Morphine. Walking with the 'Gutter Walker' is getting slower. Have also been oked to have a feeding tube fitted ( PEG ) sometime in the next month or so. I may never use it but it will be there in case I do.

A bit of trivia.....

A collection of teddy bears is called 'A Hug" and this is part of our extended family...
A person who collects teddy bears is called a Arctophilist ( Arctophile )

Faith...

2007-09-16T15:57:00.000+12:00

If I tread on anyone’s toes with this entry then I apologize now..

Where and when does faith come into one’s life as far as a ‘Terminal’ illness is concerned. Faith comes in many shapes and forms, is interpreted in many languages and almost everybody on this planet experiences it in one form or another.
It is like watching the buds on a tree and knowing that come springtime they will burst into bloom. Faith can be knowing that a rainbow will always have the same colours and that the four seasons will follow each other as they have done since time began.
If you can have the belief in and off yourself then you are halfway there in having faith. Believe in your body and its surroundings and know that you follow in the path of many thousands of people worldwide all looking for and finding some form of faith.
Your faith does not have to be religious in nature. It can manifest itself by showing you that people care about you, that the nature of your illness should not be hidden away but bought out into the open for all to see. Faith has, so we are told in times past given back to people, the use and fall function of their bodies.
If only it was so simple. Faith can not restore body tissue that has been destroyed or of muscles eaten away. It can not give back to you, once removed the ability to walk or run, speak or sing or the many body actions that make up the unique form that we know as mankind.
But if you can accept what has happened to you, take it on board in all of its ramifications and know that many before you have had to do the same then faith can be like the light at the end of the tunnel.
Faith is waking up each day and seeing the faces of those who love you. It is the belief that despite your illness you will find the faith to see another day, another week come and go.
I take my faith in both hands and in my heart and know, regardless, that the faith I have will be returned twofold . So, ALS/MND need not, to me, be the end of life as I know it. It is simply another step or two down the path of faith towards another time, another place.
I love life and all it has to offer. I am 65 years old and have had many trips along many different paths and if my belief in myself and in whatever the future has in store for me is to be viable or worth doing then I have to have faith…
So to anybody reading this for the first time and having been diagnosed with ALS/MND and you do not know how to cope.. Take your faith, religious or otherwise, with both hands, look into the hearts and souls of those who love you and know that I at least will be there for you , sharing my faith and the belief that together we can and will find peace and that we will all see the light at the end of the tunnel.
Being diagnosed with ALS/MND is the last thing that anybody wants to hear and it is a cross that many people can and will not accept and so it becomes a situation, depending on what sort of time frame you are given where not only your faith but that of your family and friends is tested to the limit. But with faith comes love and the two combined will in most cases help ease the burden of what you have and make the path easier to follow….
I am into one year and nine months of the two and a half years that I was given and I am still fighting this disease… faith and the belief in myself has certainly helped me come to grips with it…..So, life goes on. I am looking forward to Christmas and my birthday in March…. We move into another house in the next week or two where I will find life a lot easier, for the moment…

Update...

2007-09-12T17:12:00.000+12:00

UPDATE ON MY CONDITION…

Even walking now with the ‘Gutter Frame’ is getting progressively slower. Harder to stand up straight as back muscles getting very tired. Hands are loosing a bit more coordination with the left hand catching up to the right as far as muscle wastage goes. Also finding it more difficult to pull lower garments up when dressing by myself.
Now finding that more foods are not going down the same which is a bummer. Lower legs (both) are looking thinner with my left one being the main culprit. Have noticed (rather felt) that my backbone is becoming more noticeable.
Looking at having a ‘Peg’ fitted into my stomach to enable me to supplement my diet.
To all outward appearances I have gone downhill, but, on the inside, well, I am still the same. I still have all the normal thoughts and feelings that everyone else has and it is that which is helping to hold me together. I am still a husband and father, friend and supporter to other people with ALS/MND. I believe implicitly that life for me goes on despite what I have and that I will continue to enjoy and take part, as much as my body will let me, in events concerning family and society in general.
I will not have to battle with getting in and out of a high bath for very much longer as we have found a house with a ‘disability shower’ and ramps up to the doors which means I will be able to go out in my power chair and enjoy once more having a ‘walk’ into town or getting a breath of fresh air ‘walking’ with Jan.
So, I get on with life and take each new day as a bonus. My body may be breaking down but my spirit and resolve is just as strong now as it was almost two years ago. I will also repeat here that in myself I am not angry or bitter at what has happened to me. I can not change my future and ask for the old body back, that is not to be, but I can, in some small way, by being positive in my attitude and outlook on life help others with ALS/MND…..

Symbiotic

2007-08-24T16:07:00.000+12:00

Just what are we…we are a free standing, free thinking class of warm-blooded vertebrae animals. We have the advantage over other classes in that we walk upright and have a highly developed brain. We have the ability to work in many environments and make adjustments to the way that we as a whole live.
In other forms of life on this planet there are, in many instances, what we would call a symbiotic relationship. You have a host and a parasite, both living as one and eventually it is the parasite who comes out on top.
To all of us with ALS/MND we also have a symbiotic relationship. Like all parasites ALS/MND has to feed and it does that slowly and surely by eating away the muscles that holds our bodies together.. Muscles and tendons are part of the framework making up the human body. You remove or damage them and we are in trouble.
We can not back out of this relationship, from this disease that lives within us but we can learn to live with it and adapt to the conditions that are imposed on us until such time that our bodies can no longer tolerate the restrictions, the boundaries and the far reaching consequences of a condition that we still know nothing about.
ALS/MND has many tentacles spread over most of the world and once it makes contact with an individual will not let go.
But unlike other forms of life we hope to find ways of beating the odds and through many agencies and medical institutions world wide we are looking at finding a cure or at best a way to improve the quality of live that we have in the meantime. It may yet take many years but if we can rid ourselves of this complex and difficult condition mankind will be better off.
I remain positive and try to be a support (via my blog) to others with this disease.

Thank you

2007-08-18T13:26:00.000+12:00

You can not imagine what it is like not to be able to have a bath with the fear of falling or hurting ones self because of your bodies condition until you have someone to help you…to know that there is now no cause for alarm or worry in getting in and out of the bath is really great.
Even having help with dressing.. you try to put on a shirt or a pair of pants or socks and shoes and those wonderful objects called hands have a mind of their own. It can be very frustrating and time consuming. So to be bathed and dressed with no exertion or stress makes for an easier time all-round.
And that is what it is all about. To have life made easier for us would be our biggest challenge. To contemplate being in a situation where you have to use vast amounts of energy just to do the basics, like pulling up a pair of pants can be frustrating not only to yourself but to those around you.
With me it is also the fact that the lower back muscles seem to be weakling and that makes just standing up straight hard work. Such an everyday task but to many people with ALS/MND it is the simple act of doing what you have done all your life taken away from you that really hurts.
And it is this hurting that makes some of us determined to get on with it and go through the process of enjoying what we have with family and friends. Sure, there are moments when even I sit back and have a weep but strange as it may seem I am not weeping for myself but for all those whom I love, my wonderful wife, my sons and their families, friends that I have made via the internet and to all those who have been helping me.
I lie back on my lazy-boy and quite often now start day-dreaming on what has been, what is and what could have been. Our futures may look dark and foreboding but there will be many moments when your day is brightened by a smile from someone you love or family members drop by to spend time with you. To see the sun shining and hear birds singing. To look up and see a beautiful rainbow. Looking at family photos and remembering all those precious times.
All of this helps to bring back to you the fact that you are a part of something special, that you are here for a purpose, to pull together not only your family but in reality all off those suffering from this disease word-wide.
We all need that ‘loyalty’ of commitment from the word-wide community to try and erase the hurt, pain and in many cases the torment of not being able to cope. Speaking for myself it is that ‘loyalty’, the feeling of devotion that says to me that there are people who care, be they family or care-givers. To be able to ease my day and take away the daily stress and fatigue and to give those moments back to me that mean so much. To shed a tear or two for those who may not have the support and love of family and friends and to be able to thank everyone in my life.

Our race

2007-08-14T14:49:00.000+12:00

We are all children at heart, wanting the best things out of life. And some of us are lucky and get just that, health, wealth and happiness. But there comes a time when a few of us have to sit back and have a look at what is happening around us.
I am one of those elite few. To look back on my life and remember all the years when I was considered normal. Well, as normal as one can be in this day and age. To be able to go into town, spend hours walking around the shops and generally have a good time.
To travel by car, plane, boat or any other means of transport was no problem. To those of us who were sports minded the world was our oyster and our bodies were the foundation that supported all our hopes, our inspirations and the glory of our race.
We trained in all fields of society becoming leaders and learned much of what makes up this race we call man. But… like every well oiled machine or organisation there comes a time when we have to stop what we are doing, to stand back and reconsider what our role in life is.
Our role is very simple…to stay alive as long as possible. To that end we accept whatever help is offered and prolong the invertible finish to an existence that has affected many people worldwide.
Even as adults we would like the best that the world has to offer but in our case that is not to be. It affects everybody in one way or another and no matter your position or occupation in life, no matter what gender or age, whether you are single or have a family or where you live, ALS/MND will change forever the way that you/I live in this world.
We, as a race of people, have adapted to the many conditions that life in general imposes on us. In many cases we think we are superior but nature has a way of changing that way of thinking and we must concede to her whims. In that we have no choice .
But, we are also a race who will if in necessity, fight back. And we do that with the help of many people. There are so many ways now of making our daily living requirements so much easier for us. Eating, walking, bathing, sleeping and all the other necessities that we as humans need have all been adapted to fit our individual needs.
I may have a terminal illness but I am not going to stick my head in the sand and pretend that normality is still the norm for me. I am who I am and if I have had to fit in to a new way of living then so be it.
There are people out there in many countries who take it upon themselves to help those of us affected with this disease and this also includes the many official support groups worldwide. I would like to mention that the woman who runs the ‘Ohio’ support group in America ( Phyllis Van Horn ) has at long last been recognized for all the work that she has done in the past four years. I would also like to publicly thank another woman, Margaret ( Maggie ) Baldwin of Toowoomba, Australia for all the work she does for the ‘Queensland’ MND Association, in front of and behind the scenes . Having lost family members herself to ALS/MND she knows what we are all going through and has put heart, body and soul into doing her bit. THANK YOU MAGGIE….
So, I go on to the next stage of this play on life and wait to see what is in store for me…

UPDATE ON MY CONDITION…
Now totally dependent on a walking frame inside the house. Need assistance now with bathing. Speech pattern is starting to become noticeable with slurring of words . Food is becoming an everyday experiment, mainly with meats. Also seem to have extra saliva some days. Loosing more control of hands when using both of them to do something, IE, tying up shoelaces. Looking at getting help with using the computer mouse as I now have to position right hand on mouse before using.
Apart from the above life is a box of roses, if only. I accept the challenge that has befallen me and take each new day as it comes. I remain still very positive in my outlook….

Quote….Do not follow where the path may lead. Go, instead, where there is no path and leave a trail.
Author unknown

The Hospice.....

2007-07-28T14:43:00.000+12:00

Humility and Understanding..

These two qualities go hand in hand with daily life at the Hospice. The degree with which staff handle their patients is beyond reproach. The integrity and the devotion shown by all who work there marks the Hospice as a place where you know that despite your colour or creed you are all treated with the utmost respect .

I had to fight with my little friend for use of the bed control and the TV remote...

Photo looking down the front of the Hospice..

As individuals with either Cancer or MND we are given, regardless of age or sex, the care and dignity that the Hospice are so very good at. Your bathing and all toilet needs are done efficiently and no task is too small for the staff.
Meals can be catered for individual needs and the food they provide is to my mind , ( having just come away form a weeks respite care ) of very good quality. All the staff, nurses and Doctor’s are fully capable of providing you with everything you need and of giving you that quality of life whilst at the Hospice to make your stay easy, not only for you, but for all family members.
I have nothing but the up most admiration for the way that I was looked after during my first stay there. A huge thank you to you all….

Looking towards the 'Day Care' centre on the right.

If there was an award available for an institution providing Palliative & Respite Care for people with a terminal illness and of making the transition from living to the next stage of ones life easier for families then I would nominate 'Te Omanga Hospice' for such an award. From your first stay to your last they are with you all the way providing not only the full nursing care for you but guidance and counseling for all family members.

Looking towards the front lawn . One of the views that patients get from their rooms.

With my little friend watching TV...

Quote... I am one of those people who just can't help getting a kick out of life -- even when it's a kick in the teeth.

Polly Adler ( 1990 - 1962 )

New Dawn

2007-07-08T12:52:00.000+12:00

Reasoning … Mankind was fortunate to have evolved with a brain that has over many thousands of years evolved with him. From the first time he made fire to putting a craft into outer space he has leaped forward, thinking things out, reasoning why this worked and that didn’t.
When you look at it hypothetically , it was only a month ago that he killed his first animal to be able to eat, three weeks ago that he dissected and made working drawings of a human cadaver, two weeks ago that he invented the computer and just on a week ago that he walked on the moon.
In the last couple of hours we have made strides against many diseases, have held world concerts to fight starvation and to combat global warming. But to what avail have all of our efforts been. We are still no closer to finding out why mankind has so many deficiencies, so many things wrong with the way we live.
We have this wonderful power to be able to reason but if we are unable to come up with a defence against a whole host of worldwide ailments including ALS/MND then we must find another way to use the many resources at our fingertips.
Over the last few years there have been many innovations to help those of us who need it to have a quality of life befitting to the lifestyle we have been used to. But, again, it all comes down to being able to reason, to put forward our thoughts and turn them into working drawings, if you like, and to come up with methods and procedures that will benefit all of mankind in his fight against life in general.
So where do we stand at this moment in time with our ailments. Research is still being done into the whys and wherefores of ALS/MND. We have many support people that most of us can turn to and our journey through life is made that much easier for that reason….
We have a brain but to use it we must reason things out, come up with ideas and theories, speculate on the possibilities of cures and put forth techniques to be used and the rules governing those techniques.
Mankind has accomplished much since the dawn of time but he still has a long road to go down before he can say that all disease has been eliminated, that there will be no more starvation, that we will all be equal and that there will be a ’New dawn’ , a new path towards salvation.

Quote… The earth is empty. The trees, once thick with blossom stand dead against a bitter sky. The streams are frozen. The heart has lost all hope. But see - along the branches new buds appear and greenness pushes through the ground unnoticed. Spring may be slow - but will at last return.
Pam Brown, B. 1928

Family life

2007-06-30T17:39:00.000+12:00

We, each and every one of us regardless of whether or not we have a disability are fully cognisant of the fact that life marches forward. There is a place for us in the order of restrained chaos that is ever present in the way we live day by day.
There are with most people set rules on how and what you do with your life, on how you interact with each other, not only in private but in the work force.
But those rules can be broken, at any time. A fit healthy person can find that overnight he or she has joined the ranks of an ever growing force where the prime requisite is that you become labelled with an illness of an ‘neurological’ nature.
I, along with many thousands around the world, have ‘signed up’ as it were. I now have the distinction of knowing that with my disability there is no way that I can resolve the quandary that I am in, so, I go forward in life, meeting along the way those who like me are looking for their place in not only a continuation of family life but being a person who can still be accepted in society.
The most important words in that last paragraph are ’family life’. To be able to function within the family is vital. To continue to be a father or mother, spouse or partner etc with this disability is not an easy road, a road made harder in that they ( the family ) know you will not be getting any better. To show a brave face is fine but if you want to cry, then cry. If you want to laugh hysterically then do so. It is all part and parcel of this condition that we have. It is the same with every other emotion we have, there is little or no control on what takes place within us. So let it all happen and people will understand.
Family. To be alone with this disease must be unbearable but made easier if there is someone in your life. Even when you become bed-bound to know that family are there for you, in one way or another and that to see people who care, be they adults or children, helps in some small way to enlighten your day.
It does not matter what colour of skin you have or what part of the world you live in. We all have family at some stage in our life’s and if you are lucky they are with you all the way on your journey.
Families are the mainstay of humanity. Without a family life we can become morose and not fit into society . We can and do make wrong life decisions and we all need someone to stand by us.
But with some families they are at a crossroad in the evolution of medical science . To accept unreservedly what is happening to loved ones and to know that there is still not enough known about this disease and with no cure in sight is not good enough.
The medical profession have come a long way in the last hundred years but with this particular disease they are still fighting the unknown, still trying to calm the fears of even those who live, day by day with this illness, who like me have accepted what we have and that families may or may not abide by the decisions made in their name by medical professionals in there quest for answers …
At what cost to families then to those living with this condition.. It has torn families apart with members not being allowed to see loved ones. To be turned away from someone you love because of whatever reason and to know that elsewhere in the world the reverse is also happening is hard to accept.
To be part of a family where the person afflicted is loved and shown that love unreservedly is the way it should be, but, we don’t all have that family affinity, the feeling that no matter what we all belong.
I am one of those lucky ones, someone with many family members, not only local but in different parts of the world who all understand what it is that I am going through and makes the rest of my journey so much easier to undertake.

Quote…Tomorrow is the most important thing in life…Comes into us at midnight very clean. It’s perfect when it arrives and it puts itself in our hands. It hopes we’ve learned something from yesterday.
John Wayne (1907 - 1979)

Legs and hands...

2007-06-26T16:05:00.000+12:00

LEGS.....
Where would we be without them..and hands. Four appendages that go through life with us and with the ability to do all sort of things for us. Nearly every operation, every movement of our bodies are governed by the use of either hands or legs.
Remove the power and strength of these four appendages and what do you have..a body that has been deprived of independence and no longer able to conform to ‘human’ standards.
Both legs and hands are taken so much for granted by us that when we start to loose the functionality of either of them we loose something in our belief to be able to be part of the family, part of society … but that need not be the case.
In the early stages of my condition walking was not so much a problem. It was a nuisance factor, a minor irritation . But as time moved forward it became obvious that I had to find out what was going on.
Still working (at that time ) just standing in one spot for an hour or more and my legs, specially my left, were becoming so very tired. It got to the point where I was sitting down more than standing and it went on like this for months. To sit and have all my body weight removed from my lower limbs was a feeling of extreme relief.
Unless you have experienced something of this nature you can not know what it was like.
Once we knew what the problem was it became clear that I would benefit from a walking aid. My first and only walking stick came into use. Now of course I use a walking frame ( Gutter Walker ) and the stick only for getting out to the car.
The problem with my hands started in the right one and is getting steadily worse. To complicate matters the left one is also starting to play up and so it goes on…
We are the ‘most’ advanced race on the planet ( well, we like to think so ) because on the ends of our hands we have ten wonderful digits. FINGERS….
When you consider how many times a day we use them to fulfil our daily needs and the fact that they are the key to whatever we do, be it just to hold a cup or drive a car, type a letter or wipe your nose, tie a shoelace, hold a baby and the thousands of social applications that we use them for, to loose the feeling and function of these amazing digits is maybe more upsetting than the loss of using ones legs…

When you look at all the things that can go wrong in the human body it’s a wonder it works at all but we are a tenacious species at the best of times and so we put our best foot forward ( I wish, lots of laughter ) ,gather our family and friends together and try to make the most of a situation that calls for informality, a degree of dignity, a lot of trust and a love for life.

Quote…We have enough people who tell it like it is - now we could use a few who tell it like it can be.
Robert Orben, B. 1927

Emotions....

2007-06-19T19:41:00.000+12:00

How do you express your emotions in a way and manner that other people will understand. Emotions that flow like waves in an ocean full of obstacles that stand in the way of how we, humanity, deal with misconceptions of medical prognosis .
Anger is generally the first feeling that one has, followed by bewilderment and the thought that here we are, being diagnosed with a terminal illness when you know without a doubt that there is nothing wrong with you and that a simple course of medicine will return to you the full use of your bodily functions.
Medical practitioners have a hard road to follow that is made harder when you wonder what is going through our minds, when we have had time to consider the consequences of our prognosis and know that there is no mistake and that the person who has just changed your life has gone down this path many times before.
Misconception only comes into the equation if the diagnosis is wrong. And with ALS/MND that does happen on occasion . It is sometimes many years before a correct diagnosis is made and it is the intervening time between those visits to your Doctor/s that the damage is done.
I was lucky in that I had a Doctor who had dealt with many people with MND and he knew the minute he saw me what the likely problem was. Also the fact that I was spotted early on in the piece.
Emotions…there are so many that we have and we all without fail act differently to our given situation depending on our age and degree of ailment. There are so many factors that come into how you react . Family situations are ( I think ) the main source and right at this moment in time my/our situation is becoming difficult in that my walking has deteriorated to the point where I no longer feel secure with just my stick. I do use all the time in the house a 'Gutter-walker' or walking frame. The only 'safe' way for me to get around the house without falling over....
What happens when, and the time is not that far off, that I find going outside on my own is longer possible. Chair bound and or bed bound. I know its coming but I would rather just not yet.
We, Jan and I, are still trying to sell our shop, that also is not going well and only compounds the issue. Same with our living conditions. Try living in a small three bedroom house, no room for the power chair so that has to go into the garage. This means my walking outside to get the chair, hmmm. Bathing is also getting to the point where safety first will also become an issue.
But we are managing, just.
UPDATE ON CONDITION.......

Since all of the above I have had a visit by a nurse from our ‘Specialist Rehabilitation Services’ to the effect that my ‘lack’ of walking is now of paramount importance and that I will be monitored ( among other things ) from now on. Also had a ring from Te Omanga Hospice to say that I will be getting a full review of my condition and that I will go from ‘share-care’ to ‘full-care’ by the Hospice which will mean that I can go in for respite care whenever I feel the time is right and it also means that Jan can have a break from worrying about me constantly when she is at work.
Another thing of concern is the access to and from both outside doors in this house. Rehab are thinking that one out as it is difficult.
You know, I am not a religious man but when ‘He’ up above made us in his image he forgot one very important thing before pushing the ‘finish button’. He forgot to do a ’proof read’ of the final design and didn’t remove all the little ‘flags’ marked ‘Terminal illness’s” . Life would be so much easier if he had.

Emotions…..I think I have had them all over the last eighteen months but if I can still laugh ( and in company ) and cry over the silliest thing, feel good within myself and generally continue to be VERY POSITIVE then life won’t be so bad. ALL THINGS CONSIDERED……

Quote... I think that wherever your journey takes you, there are new gods waiting there, with divine patience - and laughter.
Susan M Watkins ( B. 1945 )

Night splint

2007-06-09T15:06:00.000+12:00

This is a night splint to help me get a good nights
sleep. Designed to prevent the fingers from curling under and cramping whilst I am asleep.

Made out of white plastic and moulded to the shape of my hand with velcro straps to hold it on.
If the left hand should start doing the same thing and it looks like it will we get one for this hand as well.

It fits nice and snug and once asleep is not noticed.
Just one of the many innovations that are out there to help one retain some control over ones body.
I am noticing that there is difficulty when trying to use both hands in that I am loosing coordination. ie. doing up my shoe laces.
One of the hic-cups that comes with this ailment.
If anyone is having trouble like I was/am with their hands at night then see your local OT.
And I wear a splint on my left leg as well which helps me to walk . photo in one of my first entries.

New Generations

2007-06-08T16:16:00.000+12:00

We are all individuals in our own right, with the abilities and the functions that make up the human persona. Hand in hand with this is the fact that we, as humans, have certain obligations, to look after, not only ourselves but future generations to come.
But, being the people we are, with all the medical ailments that have bereft our species since the dawn of time, looking after ourselves has become a specialty in itself.
ALS/MND/Lou Gehrig’s Disease/Maladie de Charcot has become one of those specialties. The incidence of this disease/ailment, call it what you will, is on the increase worldwide. Another factor for the increase is that the age for contracting this disease has dropped dramatically.
NOTE. In New Zealand we have approximately 300 people at any one time.

What can we, as individuals do about it. I of course try and bring awareness of what is happening by expressing my thoughts and feelings on the different aspects of our/my condition and I stress here, that they are just my feelings and thoughts.
But when you read some of the other sites on the internet where people are doing just what I am ( like Jeannie in England and Aimee in the USA )
then maybe some good will come out of it.
There are vast sums of money being spent in different parts of the world on research into the cause of ALS/MND and on finding a cure but that possibility I think is many years down the track.
The human body will never be replicated in its entirety. Cloning a human may be possible but the subject matter would have to be 100% perfect in every single aspect . Every blood cell, nerve and neurone, muscle and all body functions would have to be exact . But would we in our ignorance, introduce into this perfect body, a time bomb, a new and more virulent form of what we have now. I can only hope that such a likely hood would not happen.
So, the question that comes to mind is just how have we managed to stay alive all these years. The human body is subject to many types of ailments, a lot of which are terminal. If only we knew why…What has medical science done for the human race as far as ALS/MND goes. Not much…..

We are subjected to and governed by the Laws of Nature. We have been moulded and shaped over many thousands of years with no variants in our species. And that is where we as a race have lost out because the variants are within us . Our outer shape may not have changed but the internal aspects of our bodies have and therefore we as a species have to concede that we carry within us not only the new generation of men but newer and more difficult forms of Neurological types of disease……

Quote… The important thing is not that we can live on hope alone, but that life is not worth living without it.
Harvey Milk

21st June....

2007-06-05T16:40:00.000+12:00

Global Awareness Day, 21st June.

I know for sure that a lot of events will be taking place in various parts of the world and that is really great. I have checked with my MND fieldworker and as far as she knows New Zealand is not doing anything to raise the plight of those who live here and who suffer from ALS/MND . We are sadly lacking in this department and I feel for all people who have to sit back and watch what other countries are doing.
There is so much talent in this wonderful country of ours and when I think of just what we could be achieving to raise funds for local MND Associations and/or individuals makes my heart bleed.

If every major City in New Zealand were to devote a whole day to MND we could bring in many thousands of dollars, but, dreams are free and so I will watch with great interest to see what the rest of the world does.

( I will withdraw this entry if I am proven wrong about what happens here )

Photo taken one week ago at home.....

Quote…I think these difficult times have helped me to understand better than before how infinitely rich and beautiful life is in every way and that so many things that one goes around worrying about are of no importance whatsoever.
Isak Dinesen ( Karen Blixen ) 1885-1962

Balance....

2007-05-29T16:38:00.000+12:00

Stability…A large Ocean Liner is steaming through the waves of a storm at sea. The passengers onboard are content in the knowledge that the Liner is being controlled by commands from the brain of the Liner on the bridge. . Their world at this moment in time is secure.
They know that there is no danger of floundering as the liner has stabilisers and as long as they do the job that they been designed for then everyone can keep on enjoying themselves and life will go on as before. . BUT………
On the bridge a signal goes out via the circuits that run the length of the Liner to one of the stabilisers,. The unknown happens and there is a short circuit, the stabiliser drops slightly and the stability of the liner has been compromised.
People onboard notice that they have difficulty walking upright, that their balance is now uncertain. With the lost of stability there is also the fear of falling, of being no longer in control of their bodies.
Remove from any tall structure, like a skyscraper, the steel framework. What happens.. it will collapse. Remove from us the muscle and tendons of our legs. The scenario of the Liner and building is the same…
Stability is part of the framework of our bodies. Without it we become one of uncertain quality, a framework that has weakened to the extent that we know there is no turning back.
If you know of someone with a walking disability and you are reading this and you can correlate the above scenarios then you are halfway there to understanding just what I and thousands like me are going through every day.
You do not appreciate the ability to stand upright ( without support ) until it is taken from you. When that happens you realize the appendages that extend from your body, not only the legs but the arms as well, are going to get weaker and their mass ( muscle ) is going to disappear over time, then you know that the loss, any loss, of body function is going to affect not only the physical aspect of your relationship with this disease but the mental side of it as well.
Stability and balance… They are a marriage of nature.. Remove or damage one of them and you have a relationship that can not work.
ALS/MND is made up of many different components. The above are just two of them.

We are all different with this disease. Yet we are all the same, we are human…

Quote…..”Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are”
‘Bernice Johnson Reagon’

Togetherness......

2007-05-25T14:59:00.000+12:00

We are what we are and there is no way that we can change that fact of life. I am the essence of my parents and my children are the essence of Jan and I. It is the continuation of all families and of all generations to come.
And it is that closeness of family that holds us together, holds me upright and leads the way along this path of life. I have travelled along this path now for almost seventeen months and have watched, with some trepidation, as new family members are bought into this world.
What will they find as they progress through life in this world of ours. Will they become disillusioned. Will they become leaders in their communities or will they take whatever comes their way. It is a tough world today and getting tougher by the minute.
And what is it that drives the human race to keep going further forward in leaps and bounds. To make decisions that may or may not better Mans existence, to come up with new ways of improving, in general, the way that we, as a race, live.
It is the medical side of this story that we, you and I, depend on. To find out, if we can, what makes up our genetic background. Just where along my journey in the last 65 years did my genes do a back flip and decide that I as an individual should have an extra page to add to my ‘Book of life‘.
Was it in fact my genes or another factor that we still don’t know about. Will we in fact ever find out just what it is that makes some of us ’special’. And I use the expression ‘special’ in the loosest sense of the word. Of what use is it when you are ‘given’ a disability that will in the long run remove from you the right to live as you choose. A disability that brings with it hardships that you wouldn’t want to wish on anyone.
But it is also that hardship that brings us, you and I, closer together, to bond in a way that most people wouldn’t understand. We need the companionship of other people like us. It is through the Internet that we get the comradeship of friendship and in groups of volunteers that give of their time, their own brand of togetherness, fighting to give all people with our condition, a life free of the hardship I speak off.
A life that has quality, dignity, peace and love.

‘Quote’…When you get into a tight place and everything goes against you till it seems as though you cannot hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
‘Harriet Beecher Stowe’ (1811-1896)

Strength.....

2007-05-19T15:36:00.000+12:00

Strength…My strength is in believing in and of myself. If I have the conviction to wake up every morning and say to myself, “Today is a new beginning, make out of it what you will and take it in your stride”, that is my strength. And every new day is just that. Not only do I believe in myself but all those who are around me, Jan, my family, my friends.
To hear the sounds of life and to know that I am but one small person living with a disability. To accept and acknowledge this is a major step in my battle, this fight that I must go through to get to the other end of the day and say, “Well, I have won that one”. It is really a great feeling to be able to say this and to know that what happens tomorrow can not take away what happened today.
My walking is another challenge.. it is almost like taking one step forward and two back but as long as the determination is there I will keep going ‘upright’ as long as possible. But I have found that to try and carry something in my right hand and use my stick with the other and to get BOTH legs moving,, WOW.
Eating is also starting to be interesting in that I seem not to be able to chew and digest ‘beef’. Doesn’t matter how soft or how well cooked it is. Even when it has been put through a blender, the texture of the meat, the fibres just build up and roll around in my mouth. Other meats we are experimenting with . Interesting hey…
Soup on the other hand is great. Bread and soft rolls also no problem. Drinking, a lot of coffee and the odd fizzy drink. First drink of the day though is a cup of tea. Must have my tea….
And getting out in my power chair and going down to the local pub for a drink, I enjoy that. Just one mind you..hate to be had up for ‘drunk in charge of a mobility device’. ( An elderly man was killed last year driving his mobility scooter by a woman in her car who had had one too many drinks ) . Another day had at the ‘Day Care’ today. It is great to have all these volunteers who make our three hours there so enjoyable. We had a guy came in today to play the Organ that they have and one of the women volunteers there joined in when I said, “Lets have a dance to this piece of music”. So with me hanging on to a chair with one hand and standing upright we ‘Danced” on the spot. Great fun and that is what it is all about. Try and forget my problems and enjoy the day in whatever comes my way….

Memories...

2007-05-05T15:59:00.000+12:00

The time is midnight and it is time for two tired bodies to hunker down and go to sleep. Moonlight is showing through the drapes and outside I can hear the soft breeze blowing in the trees. There is the promise of a nice day when we get up. Jess, one of our cats is sleeping on top of the Duvet between us and I can hear her purring .
Jan falls quickly into a heavy sleep and I pull the bed sheet up around my shoulders. It has been a long day and I should be tired but sleep eludes me. Lying there in the dark with the warmth of the bed surrounding me and listening to the wind outside my mind starts to wander. It is like I have stepped into a whirlpool of sights and sounds, all intermingling with each other.. Jan stirs briefly and then slips back to sleep.. My mind is dredging up memories of people and places and events of long ago.
My years as a young boy growing up in a loving family of five brothers and a sister uppermost in my mind at the moment. Faces of people that maybe I should know but who have grown dim. One after the other they flash pass my eyes and I lie there, in the dark, wondering , wondering…..There is my mother, waiting for me to come outside to help her in the garden. It is summer and a time that I in particular enjoyed as we get down on our knees very early on a Saturday morning with the sun shining down and get our hands into the soil to weed the garden. Out of six boys I was the only one interested in the garden. The rest of the family still in bed. More memories flood in…I turn over on my side being careful not to disturb Jan…Family outings were enjoyed by all and a picnic lunch at a local beach always went down well. Birthdays were always remembered and in the early years of ‘Black-outs’ and food shortages because of ‘World War Two’ presents were sometimes in short demand. Clothes especially as Mum was short of money and it wasn’t unusual for us to be given ‘New’ pants made out of sacking, Even shirts were made out of what ever was on hand.
I turn my head to look at the time, 1.30am …Listening to Jan I almost feel envious … Places that I have been to are crowding into my mind. Holidays overseas doing the sightseeing bit but also happy thoughts of staying in the cottage that my father lived in as a boy in the ‘Shetland Islands’, seven wonderful weeks. More memories as a young man working in various trades. The whirlpool in my head bringing up pictures of the family covered in ‘blackberry’ juice walking from an afternoon picking berries. What a sight.. hot, dirty and with scratches from head to foot. And thousands of berries.
Oh, those were the days… I make the mistake of stretching my legs which cramp up on me…The long evening walks with Mum were also a time to look at what was going on around us. Strangely, I don’t seem to have many memories of my Father in those early years of my life. But he was one of the worlds gentlemen and I loved him dearly. If only we could film our memories. What a legacy to be able to pass onto my family.
..Jess, the cat, gets up and changes position …the time is 2.45am and my mind is still struggling, still trying to put things into perspective…Time is catching up with me and I have the memories of the three people I loved most in the world, my parents and my sister… There is the feeling of moisture in the corners of my eyes, my cheeks are wet and I realize that I have been crying. ..Jan still deep in sleep, the other love in my life…Memories of meeting my future wife, our marriage, the honeymoon and the children we had. My thoughts now turn to the present and in particular to the date of 15th December 2005. It is if I am there again in the Doctors rooms, Jan sitting there watching and wondering what he was going to say… I knew what he was going to say, I just didn’t expect to be given a time frame…You have Motor Neurone Disease and two and a half years to live. Leaving the Doctors rooms we make our way to the main door. I stagger slightly trying to hold my emotions in. Jan holding on to me. A day in my memories that I would much rather forget.
…3.15am and I feel the whirlpool in my head slowing down as sleep tries to take over…Fleeting glimpses of faces again, family and friends. We have raised a family and I can see both sons getting married. Events still rolling past my eyes. I turn over slowly, realize that my right hand has cramped up and straighten the fingers out on my chest. The wind outside has lessened and in the distance I can hear a siren. ..Time is just coming up to 4am. Dawn is a matter of hours away. Jan is stirring…I start to slip into sleep, my eyes closing with reluctance. Jan sits up and I ask if she is OK. Knowing that I am awake she says…"Would you like a cup of tea"…I never refuse a cup and ten minutes later I am sitting up in bed having a hot cup of tea. Why not, I wasn’t doing anything else…5am and we both snuggle down again and this time I go straight to sleep…
My memories have been put to one side. They will surface again, many more times. Our memories are the storehouse of our existence, without them we would be lost. If its not to late write down what you remember to make it easier for those you leave behind……

Hourglass of time....

2007-05-03T15:19:00.000+12:00

We are like grains of sand in the hourglass of time. A time that knows no boundaries and has no start and no end. And that is the question I need to ask myself. Where did it start and when will it finish.
As a young man in my early teens I used to get severe cramp in my left leg which seemed to go on for ever. The only relief was in the form of my mother massaging my leg to ease the pain. This cramping lasted only for a few years and over time ceased.
But, it is my left leg that this blessed MND started in and begs the question, WHY. Is it a coincidence. I have been told that it is not. But who knows. I don’t.
As the grains of sand move on down they interact with each other, some falling just that much faster. And so it is with ALS/MND. How much faster will I fall or will the progress down slow and cause the hourglass to tilt. This is what we all hope for but the reality is that we will, with time being the creature she is, put the hourglass back on track and our grains of sand will continue on their ultimate course.
We are a strange people. Our bodies control us in all aspects of our being, in the way we talk and think and how and what we do . And it is the same when we contracted ALS/MND.
WE HAVE NO CONTROL…our body controls us…
The body dictates to us that we will no longer be able to do this or that. Life as you know it ( and as time knows it ) has ceased to exist. So, what do we do. You ( I ) juggle and make the most out of a bad situation. We still require that daily contact with the people who matter the most in our life’s and they with us which means that they too have to adjust.
We still need to eat and drink, brush our teeth, get dressed and do all the 101 things we used to do. But now, with ALS/MND and time standing on the sideline we have been handed a new set of criteria. A new way of living.
The guidelines’ for us and all of those about to be diagnosed have changed dramatically . And to achieve the quality of life that we once knew and to be able to hold on to it for a little longer we have to make aware, to the people of the world, the situation that we are in.
Time will not stand still for us. This we know. It may slow down but that is all. If I could climb or run or even walk to make aware and to raise funds for ALS/MND I would be out there doing just that. But, that is not possible so I will try and do my little bit via the internet to bring more awareness of not only my situation but that of all people suffering this disease.
The sand in MY hourglass continues to fall………..SLOWLY…..

Never Give Up

2007-04-25T17:41:00.000+12:00

ALS/MND….To most people it is an enigma. A problem that they would rather not know about and if they do know to try and put it to one side to deal with later.
But later, for us, just isn’t on. We would like people of all ages, to know that simplicity in life, for us, can be complicated by the simple fact that not enough people understand just what is involved in staying one step ahead in this game of life. And that is also a problem because we can only take a few steps before hitting the road block.
And that block is life itself. It would be almost sacrosanct to say that anyone with our condition could demand the support that they need to keep ahead but it doesn’t work that way. Support of any kind is available if you need it, you do not have to demand, just ask. Most countries can provide the aids ( like wheelchairs) and medication if needed ). And it is at this time that I would like to thank on behalf of ALS/MND sufferers worldwide all of those people who have given of themselves to be the support that we need and ask for and in particular the ’ALS Family Support Group of Ohio, Inc’. Phyllis Van-Horn is in charge of this group. They do a fantastic job and are just one of the many groups who mean so much to us. ( not forgetting that I live in NZ ) THANK YOU …. Photo of me joining in at the 'Hospice'...

Another kind of support is that run by our local Hospice, a Day Care Centre for those living with a terminal illness. . Including MND. Approx. three hours one day a week. A car is sent to pick you up ( I live about a half hours drive from the Hospice ) and takes you back home again. What a great idea. Activities include making cards, painting, playing cards for those so inclined, talking and on occasion listening to people speaking about some of life's issues . Morning tea and lunch are provided.
The title of my blog is ‘Never Give Up’ and that is what I try to live by. Never Give Up on life, how ever short or long it may be or on those who stand behind ( and in front ) of you. Never Give Up hope that somewhere, sometime, there will be a cure for us. To give up is not an option for me and I stand ( again no pun intended ) strong in my resolve to be resolute and look to the future for what lies ahead of me.
My body may be weakening but my heart and the hearts of those who know me keep me going. They include my wife, Jan ,and our family, my very dear friend Moira-Anne and the group of people who work in the Lower Hutt Hospital Rehab. And I mustn’t forget Helen from the NZ MND Association.
Someone said to me the other day that life for me must be a ‘Bummer’ and in this instance I must agree. But on the other hand, regardless of the fact that I have MND I can look out into this world of ours and know that without a shadow of a doubt that there are people, children included, in a far worse condition than I and what have I got to complain about. Nothing much. Just a disease that is taking our world by storm. The numbers are growing more every year and one day, just maybe, ALS/MND will be on the list of the 10 most Neurological disorders in the world. It should be on top of the list in my book………….
In NZ we have purple rubber bracelets with the words ‘Never Give Up’ written on them. America have the same only the colour is red. And we also have a flower as our MND symbol , the ‘Cornflower’……

Breathing & the colour of life.

2007-04-14T17:49:00.000+12:00

The ability to breathe is an action that is common to all life on this planet. In the sky and in the sea. In and on the ground. It is something that we all take for granted. Anything that is alive, be it a piece of microscopic plankton in the depth of our oceans or a giant Condor flying over the Andes . .
Some species of life may be with us for many hundreds of years and others but for a few days. The action of breathing may vary depending on the conditions that the subject lives in but it all comes down to one thing…to live we have to breathe, there is no way out of that situation. It is the one most singular condition that controls all of life and we have no choice but to abide by this aspect of our bodies environment. We come into the world and the very first thing we do is to use our lungs to breathe, it is also the last action of our lungs.
But at some stage of our life’s ( you and I ) the act of breathing is compromised and our bodies integrity, our state of health, becomes of paramount importance . Breathing …Such a simple function of our body, breathe in and breathe out. We have contracted ALS/MND and usually in the later stages of this disease the action of breathing becomes harder as our lungs, due to muscle destruction caused by our condition, take the road of least resistance and finely cease to work…….
There are medical implements that anybody with breathing difficulties can use to increase the amount of oxygen taken in by ones body and in most cases of a person with a breathing disability that is sufficient, but with ALS/MND it is the bodies inability to generate enough oxygen, even with the help of artificial means that will finely bring peace to the person concerned.
But to help us with our breathing we must preserve the world around us. Not only for those who suffer with breathing problems but for all of the species who share this world with us. There are too few forests left on this planet of ours and the more we cut down and burn means less oxygen being produced. It is a sad fact of life that mankind has to expand his horizons but at what cost to the human population and all other species when he cuts down the one thing that will help him survive, our many Rain forests .
In the long run it wont be all the illnesses we suffer that will wipe us out ( ALS/MND included ) but our overall stupidity in managing the resources of our planet…
So when someone passes on might it not be a nice idea to plant a tree. It will not help the person who has gone but the thought is there.
Green is the colour of life.. let us keep it as long as we can.

Independence and ALS/MND

2007-04-10T09:54:00.000+12:00

Disability and independence go hand in hand. They are the milestones of ones life and the indicators of how we are feeling. To be independent at a time when you are usually in good health is the yardstick we use to measure the welfare of our bodies.
But when that yardstick has been broken with a disability like ALS/MND then we as individuals have to reconsider our independence in the wake of ever growing pressure from the world around us. To come to realize that we, as people with a condition that can cause stress, anxiety, inability to do most things, frustration, lack of sleep, cry and laugh and a whole host of other every day actions then we must take the upper hand and declare to the world that we can act for ourselves and become independent in our own rights. It means that we have to restructure the way that we live and think and
off course this action involves not only yourself but those around you, family, friends, caregivers. To be involved with someone who has ALS/MND, depending on the degree of disability will at times take more than just a few minutes of your time and your own ability to react, one to one with the person concerned.
And it is quite often that closeness, that feeling of satisfaction and knowing that the person with the disability is trying his or her best to not only help you but to help themselves in a situation that is not of their asking.
For me to be independent means that I can still do most things for myself, like having a bath or spreading a sandwich, use my laptop for contact, dress myself ( pulling on socks can take a while ), make a cup of coffee and get the milk from the fridge using my walking frame ( What a wonderful asset ) Even stand against the kitchen bench and wash the dishes. That’s fun..
But that independence is slowly being eroded away and I will accept help as and when it is needed. Having said all that the one action I really enjoy is getting out in my power chair. BOY….the feeling of freedom and independence is a real boost to ones confidence. My ability to go where I want to go, within reason, to meet people like myself who are also out in their chairs, to get to go out with your spouse ( in my case she is riding a bike ) and enjoy the day. To go into town or visit the local shops and to be able to buy an ice cream, these are all actions that indicate to people your independence. A visual indication if you like that you are still out there, still enjoying life as much as you can . Still meeting the world head on and knowing that there are others like you doing the same.
And I would like to say to those others.. Keep on keeping on with what you are doing and show people that those with a disability like ALS/MND can be a part of the community, can take responsibility for their own actions and most of all be proud of what they are doing..

Look for your own inner strength and bring it out into the world…

Easter eggs......

2007-04-07T14:29:00.000+12:00

A HISTORY OF EASTER and the EASTER EGG

Each and every one of us as we grow, develop, depending on our creed and race, the standards and regulations that control our everyday life.
We learn to walk and play, think for ourselves, marry and have families and generally go through life taking each day as it comes. Religion also plays a big part in our upbringing and many people carry their faith like a torch and it is at this time of year that many practice that faith.
Easter is in most cultures celebrated by church services and with a holiday. But, we also have another tradition that is very popular and that is the giving of Easter eggs. You can go into any big Supermarket anywhere in the world and be faced with many different types of chocolate eggs. The choice is endless and mind blowing.
Children in particular love this time of receiving presents and many families make a game out of finding where mum and dad have hidden these goodies. But where and when did the first Easter egg appear.

Article that follows is from the internet...

Delve into the history and origins of the Christian festival of Easter and you come up with a few surprises. For instance, Easter eggs do not owe their origins to Christianity and originally the festival of Easter itself had nothing to do with Christianity either. A closer look at the history of both Easter and the Easter Egg reveals a much earlier association with pagan ritual and in particular, the pagan rites of spring, dating back into pre history.
For us, the ancient rites celebrating the Spring Equinox are most obviously associated with the mysterious Druids and places like Stone Henge, but most ancient races around the world had similar spring festivals to celebrate the rebirth of the year. The Egg, as a symbol of fertility and re-birth, has been associated with these rites from the earliest times.
The Christian Festival Of Easter
In fact, the festival of Easter is a classic example of the early Christian church adapting an existing pagan ritual to suit their own purposes. The Saxon spring festival of Eostre, was named for their goddess of dawn, and when they came to Britain in about the 5th century AD, the festival came with them along with re-birth and fertility rituals involving eggs, chicks and rabbits. When the Saxons converted to Christianity and started to celebrate the death and the resurrection of Christ, it coincided with Eostre, so that's what the early church called the celebration, Eostre or Easter in modern English.
The actual date that Easter falls on every year is governed by a fairly complex calculation related to the Spring Equinox. The actual formula is: The first Sunday after the first full moon following the Spring Equinox is Easter Sunday or Easter Day. This formula was set by Egyptian astronomers in Alexandra in 235ad, and calculated using the same method as the Jews have traditionally used to calculate the feast of the Passover, which occurred at about the same time as the crucifixion.
Easter Eggs
As well as adopting the festival of Eostre, the Egg, representing fertility and re-birth in pagan times, was also adopted as part of the Christian Easter festival and it came to represent the 'resurrection' or re-birth of Christ after the crucifixion and some believe it is a symbol of the the stone blocking the Sepulchre being 'rolled' away.
In the UK and Europe, the earliest Easter eggs were painted and decorated hen, duck or goose eggs, a practice still carried on in parts of the world today. As time went by, artificial eggs were made and by the end of the 17th century, manufactured eggs were available for purchase at Easter, for giving as Easter gifts and presents.
Easter eggs continued to evolve through the 18th and into the 19th Century, with hollow cardboard Easter eggs filled with Easter gifts and sumptuously decorated, culminating with the fabulous Faberge Eggs. Encrusted with jewels, they were made for the Czar's of Russia by Carl Faberge, a French jeweller. Surely these were the 'ultimate' Easter gift, to buy even a small one now would make you poorer by several millions of pounds.
The Chocolate Easter Egg
It was at about this time (early 1800's) that the first chocolate Easter egg appeared in Germany and France and soon spread to the rest of Europe and beyond. The first chocolate eggs were solid soon followed by hollow eggs. Although making hollow eggs at that time was no mean feat, because the easily worked chocolate we use today didn't exist then, they had to use a paste made from ground roasted Cacao beans.
By the turn of the 19th Century, the discovery of the modern chocolate making process and improved mass manufacturing methods meant that the Chocolate Easter Egg was fast becoming the Easter Gift of choice in the UK and parts of Europe, and by the 1960's it was well established worldwide.

So there we have it....I would like to take this moment in time to wish family and friends, here and on the internet a very Happy Easter......

And I would also like to dedicate this entry to the memory of my parents and my sister, Staff Sister Rosemary Coutts, Wellington Hospital who passed away Easter weekend 1969, age 23.

Coming of age

2007-04-04T17:05:00.000+12:00

On the 24th March I came of age. Well, the age that small children think..Gee, thats old. You are only as old as you think you are. On the following day Jan held a surprise lunch for me and it was a real emotional roller coaster of a day. A brother whom I had not seen for 12 years was the icing on the cake. A really great time for me and for those who had come to help celebrate this very special moment in my life. I would like to take this time to thank you all as I realize that a lot of planing had gone into this day. To most of us reaching 65 years of age is just another day but to family and friends it is a time for them to show how much they love and respect you. A time to have grandchildren help you unwrap presents and to see the looks on their faces. A time for those very important family photos. A time to look back at what you have accomplished in your life and to share those moments with family and friends. It becomes after all not 'just another day' but one that people can talk about and a day to enjoy. The cake of course was a chocolate one full of yummy cream and simply Delicious to eat. The weather was kind to us and everyone enjoyed their meal.

Jan had booked us into a 'Carvery" which was really great as everyone could just help themselves. I like to think also that a day like this, if recorded in some way, lends itself to preserving not only your thoughts and feelings on the day but to all the thoughts and feelings of those who know you.

It is another step up ( or is it down ) the ladder of life and a time to enjoy what you have.....

Thank you all for a great day........

The tree of life....

2007-03-30T19:33:00.000+12:00

We are but twigs on the tree of life..many thousands of twigs on many different tree’s. Tree’s grow and many of them flower and from those flowers come new tree’s. But no tree is perfect and so on occasion a flower will become deformed or sick.
We, you and I are like those flowers. We are healthy and with that health comes hope, aspirations and the longing for a long life. But our health does not stay with us and so on occasion ( like a flower) we become sick.
It is a sickness that we do not ask for. For some of us it is a short illness but for many may last beyond the point of reasoning. ALS/MND is if you like the secateurs to rid us of this illness. The flower may be disposed of but the twig remains, hanging onto what ever little flow of life may be in its system.
But, eventually, like the flower the twig is deprived of its life giving substance and is cut off.
If only we could halt the transformation of a healthy body into one containing the illness called Motor Neurone Disease but we do not have that ability to do so. It affects us in so many ways. To the average person we look (in the early stages) perfectly normal but that normality does not stay with us. With some of us it is the walking (like me) that is first noticeable . Then there is the cramping and twitching of various parts of the body, the speech and the eating of food.
Everyday life becomes more difficult and with it comes the frustrations and the anger, the tears and the laughter that goes with ALS/MND. It is a time of learning for all concerned. For the individual with the illness it is a case of having to change ones way of life but for family members may be a time to realize that what goes round comes round. ‘There but for the grace of God go I.’ Quality of life becomes important…
It is the little things that we notice first, the odd fall, the inability to climb a step or steps. Holding onto a knife or fork or trying to wrap ones hand round a cup. So many things that we take for granted. Just the simple act of getting into a car, blowing ones nose or even buttering a piece of bread. Brushing ones hair or cleaning your teeth . Even just turning over in bed. All of these actions affect our life more than most people realize and as our bodies progress down and into the trunk of the tree of life it becomes a time of reflection , a time to look back at how many flowers on our tree have wilted and become diseased but to realize also that new flowers will replace those that have gone.
Flowers that will become in time stronger and disease resistant. And it is that hope that so many off us long for. To be normal is not asking for much but to you and I what is normal any more. I will continue on this path that I have been put on but I will knock down for as long as I can everything that gets in my way.
My tree of life will and has reproduced ( I have grandchildren) and it is my hope for them that any flowers that grow from this union will be healthy and have a life free from the restrictions of ALS/MND….
If a tree is watered, loved and nurtured it will last many years, twigs and all…………

The other structure to look out for is an independent upright support, to help strengthen and keep our tree’s strong and firmly attached to their life giving ground. We need that support to stop us from falling over and damaging our branches and twigs. My support is my family and the many people out there who will push upright and tie back the numerous twigs making up my tree of life……
Watered, Loved and Nurtured…that’s all we need……to keep our tree’s growing….

A Day Care visit...

2007-03-28T15:53:00.000+12:00

Today was my first visit to the ‘Day Care’ centre at Te Omanga Hospice. After we had lunch, tables were cleared up and all the other Day Care patients went off home but Moira-Anne and I were asked to stay and talk to about 30 volunteers about our condition. I think that the general thinking with everyone present as they listened to us talking was that we were very brave…., not so. Bravery does not come into the equation . I (we) can not change what has happened to us. It is a fact of life, a fact that we as individuals have to live with. We are being successful shall I say, in that both of us have our means of contact with persons of like condition and it is that contact that is very important to us. It is helping to keep us aware, if you like ,of what is happening in other parts of the world about MND. I think we may have cleared up a few misconceptions of what MND is about and I hope that the volunteers have gone away happy in their new found knowledge of a medical condition that is slowly taking the world by storm.
To any of them who may read this it was a privilege, for me at any rate, to talk to you and I thank you for letting me do that.
And thank you to all the staff today for making my first time with you so pleasant.

Life goes on...Be positive.

2007-03-22T17:23:00.000+12:00

The human race is made up of two components, male and female. And Motor Neurone Disease does not take that statistic into consideration when she indiscriminately goes into action and injects herself into one or the other of us. Also the age factor has been affected in that it used to be people of 50 years and over coming down with ALS/MND. Now people in their late 20’s are beginning to show up in all parts of the world. And that is far too young to have a disease like ALS/MND. FAR TOO YOUNG.
Another interesting fact that is showing up is how many sports people are becoming infected with this condition. Why ? … I have never been a sports person but I also have never been a couch potato so how do we take that into consideration.
What does one have to do to become eligible to join our elite organization because once you are in there is only one way out and we all know what that is.
There are not enough people doing research into the causes of ALS/MND, at least in New Zealand and I think it will be many years before they find a cure, if at all.
But we all have to be positive in our collective believe that a cure will be found.

So life goes on and the world continues on its path through space and we, the human race struggle to come to grips with our aliments, diseases and wait for medical science to come to our aid.
And I like to think that being positive is probably one of the best actions that any of us can do. It certainly can’t do any harm. Make contact with other sufferers of ALS/MND through the internet and regardless of age or sex talk with each other about what you have and you will come to realize ( as I have ) that there are many souls out there just waiting for that contact. And if through talking ( via chat rooms or email ) you find someone in a like situation, then you will know that there are people suffering with this condition, who are willing to share their lives with you, and that you need not be alone .
When you look at it, via the internet, the world is very small and you soon realize that help, mental, physical and emotional is only a keystroke away and that someone, somewhere will be there for you.

You have Motor Neurone Disease ..the intricacies and complexity of what we have make the study of our condition really difficult in the long run. No two people are the same and because the break-down of muscle tissue varies so much in each individual that alone can either prolong or shorten ones life.
But, life goes on.. We have to concede that ALS/MND is here to stay and the reality of that situation, depending on your point of view, is that you are in for the duration, be it one month or two, one year or twenty. We are at the best of times a tenacious race of people but if anyone who has been diagnosed with ALS/MND can stand up (no pun intended ) and link up with other sufferers of this disease, then we are supporting each other, and it is that support, that positive altitude that will carry us through the difficult times ahead.
You have ALS/MND but with a positive attitude you can help

That moment in time...

2007-03-13T20:04:00.000+13:00

How do you define a condition that afflicts all of mankind. No one is spared and it is the single biggest cause of distress and heartache. We cling onto life with both hands but in the end we will loose out.
Most people go through life without the prior knowledge of when they will pass on to the other side but there are people who, if you like , have been given a window into the future. They have a time frame to work on and family and friends can prepare for that inevitable moment.
I am of course talking about death. In today's society it is a moment in time that encompasses all of someone’s life. We celebrate that person and everything that he or she has done. It is now a time not for grief, sadness or the mourning of a loved one. If the person has lived a long life and has at some stage been afflicted with a life threatening disability it is then a time of happy relief knowing that he or she is no longer in pain, no longer struggling with the everyday chore of just living. No longer having to endure those moments when the body refuses to work the way it used too.
Quality of life is always important to someone with a terminal illness and it is that quality that we try to hang onto. With that quality of life comes self respect and dignity.
Respect not only for yourself but for all those people in your life..spouse or partner, parents, children and all those who have come forward to look after and care for you. And it is the dignity with which you as a person are treated that people look on.
In the past the event of death has always been looked on as a time to drag out all the black clothes and the playing of sombre music. Not anymore.
It is now, in the modern world, a time for colour and bright music. Even the humble casket/coffin has evolved in to an item full of colour and dare I say it, humour. A time to look back and enjoy the life of the dearly departed. It is as I said a time to celebrate.
Consider that we humans are but pawns on the chest board of life and every now and then a piece falls of that board. Those pieces are you and I. When my time comes and it surely will, sooner than later, I would wish that my family, my friends and anybody who knew me send me off with a bang. Drink, eat, sing and be merry because I would not want it any other way…………..
BUT…I intend to be here for a while yet so, just sit back, relax, have a drink or two and I will enjoy the life that I have until my chest piece falls of that board…

Lifestyle...living with Motor Neurone Disease

2007-03-03T11:53:00.000+13:00

How do you live with MND. How do you cope with the everyday chore of trying to get ones body to do what you would like it to do. Every new day is an adventure into life, a life where nothing is normal any more and for you to realize that normality has gone out the door.
For me it is the fact that just to wash the dishes is a problem in that my balance will not allow me to stand upright and away from the sink. As long as I lean against it I am OK. To even grasp what ever is lying in the sink with hands that cramp up can also take up time and it is amazing the amount of energy that is used by doing this everyday task.
We humans I'm afraid take so many things for granted...walking, eating, dressing, bathing. They are all operations where someone with ALS/MND has no choice but to find alternative ways of doing things. If not by yourself then with the help of support people.
If you are a woman and find that your arms and hands will no longer cooperate with the act of putting on your bra you most likely find it easier not to wear one and let it all hang out, so to speak. Both sexes find it easier to do away with buttons and wear garments that are loose fitting, ie, sweatshirts and track pants. Shoes can also be a problem but when you have to wear a splint (as I do on one leg) then they have to be as comfortable as possible.
But our biggest enemy is energy..even the simple act of riding your power chair can take it out of you. Moving from one end of the house to the other, cutting one's meat when eating, getting on and off the loo. These are all problems that are surmountable but with effort.
Without energy the body slows down, becomes sluggish and everything is looked on as something that you would rather not do. With AL/MND then, the problem becomes twofold. If you have the willpower and the drive to try and beat your bodies condition and to make the most out of a bad situation then you are halfway to making your living/lifestyle more comfortable.
I am at the stage where as yet I do not need help with the everyday tasks of living but I know that will change. I will accept and acknowledge that fact and get on with life as best I can. But as I have stressed in other entries on my blog I find it helps to be positive...this can also make living with ALS/MND more acceptable, not only for you but for those around you.
And if you have access to a computer (and if you are reading this then you do ) then there are support groups all over the world that you can tap into. Chat rooms are also a great means of helping and dealing with your condition. You will find that there are people out there who have no one in their everyday life to talk to and a chat room where all the people have the same condition as yourself is a great boost not only for the mental aspect but the physical as well. We are a community of men and women of all races and religions from every country on the planet and the computer is our main means of communication.
So a lifestyle where you can be yourself, with decreasing limitations and acknowledging the fact you have ALS/MND can be had. But also knowing that you are not alone in this world of ours is probably the biggest factor and that help is only a keypad away. Enjoy life as best you can ( as I am ) and talk to people..talking to someone can alter your lifestyle for the better......for a while.

28 Years..........

2007-02-16T17:57:00.000+13:00

I would like to thank a person who has been an integral part of my life for the last 28 years...To Jan, my wife. She has been and still is the light in my life, my lifeline and so much a part of me that I can not imagine life with out her.
She is a woman of whom I am intensely proud of in what she has done for our family, our two sons, their respective wives and children. She has not only been a mother, grandmother and wife to me but she is also a person who has earned our collective respect and admiration for trying to run a business and look after me at the same time.
We all have our ups and downs, some more so than others but it is the way that we handle a difficult situation that differentiates or sets us apart. Jan has had many decisions to make in our 28 years of married life, some of them hard but she has coped well. Like any family our children ( now married) have turned to Mum and Dad for help on the odd occasion and being the people we are we will ( and have ) bent over backwards to put their welfare ahead of our own and that is what being parents is all about.
And that is one of the reasons I am so proud of her. She is a mother first and foremost then a wife to me. I would like to think that we, Jan and I, will have many more years together but I have to be realistic and take what ever time we have and enjoy that time, with each other and with family and friends.
So, I take this moment to declare to the world that I LOVE and respect Jan for everything she has done for me and for others and that the future, though it looks black with MND hanging over us will not stop or diminish my love for her. I know that as time goes on she will have the support and love of our family and friends for when I am no longer here. That she will carry with her always the feelings, the hopes and the desires that we have for our respective sons and their families.
I have no animosity towards nature for giving me MND. I believe our paths are laid out for us at the moment of birth and this is my path and I will and have accepted it. Jan has and is learning to live with it but like many people she must have moments when the question 'why Robert' hunts her. All I can say is stay strong, carry my love with you and wear it like a cloak. Be proud but most off all show the world that you are who you are.
Thank you my love for sharing your life with me. I treasure the ground that you walk on. Thank you for giving me two sons and thank you for being the person who stole my heart......married 28 years on 17/02/2007.
I LOVE YOU.......

ALS/MND Consortium

2007-02-07T19:16:00.000+13:00

There are many organisations in the world today devoted to ALS/MND . Most of them you can find on the Internet. But, there seems to be no cohesion in the different organisations. no unity. Each acts independently of the other. You can spend hours looking for a world wide body committed to dealing with ALS/MND and there is none, well, none that I have found.
What I would like to see is a world wide unilateral Consortium made up of members from every country in the world. There would be a Governing body with a board of directors and a CEO.
I have just been looking at the pile of notes that I have compiled for this entry and realize that on this subject I am getting in way out of my depth. So, to make things as simple as possible I will outline, very roughly, my ideas.........
The members would consist of specialists in every field of the medical profession who deal with ALS/MND...( this would include National Health Boards from each country) . There would ideally be at least two to three Representatives from each field. I would also like to see an International Bank account set up funded by large Company's and or individuals, again from every country. The reason behind this is that we, the person who has ALS/MND face a problem worldwide. Speaking for myself my wife and I are in the difficult position of not having enough funding to buy a house that is suitable for wheelchair access with wet areas etc.
We would in that case apply to the Consortium through a National Office in our own country to get the funds needed to acquire a suitable house. This again would also apply for the acquisition of any mobility device to help one get around. I know that it is difficult in some countries to get anything for helping with the general day to day task of living and that a lot of people have to wait many months for what they need, ie a power chair for instance.
In the area of research each country would provide details of any findings to the Consortium and that information would be accessible to all members. This will give uniformity world wide in that area. As with other sites on the Internet there would be an international 'Chat Room' maned 24/7 by volunteers.
Another thing that I would like to see ( and the logistics of setting it up would be a nightmare) is to have a data base set up so that every body who has been and who will be diagnosed with ALS/MND goes into this. This data base would again apply to all countries registered with the Consortium and would be accessible to all Medical facilities. Information in the data base would be correlated to provide up to the minute statistics (world wide) on all types of ALS/MND, the Sod1 gene ect. could be invaluable to research being done and would be open to all Organisations in the Consortium. The demographics alone on say just the age of people would again be invaluable. And all individual / personal web sites would be asked to join the Consortium. There are at the moment a lot of people on the Internet, like myself, who have a web site and I have no worry about who reads it, the more who do then the better for me.
I would also like to see Parliamentarians from all countries represented on the Board. so, in a nutshell, all sites on the net at the moment dealing with ALS/MND would be in the Consortium.
I personally believe that this would bring uniformity and cohesion to the Internet sites. Instead of being scattered all over the place everybody would be under one umbrella. But, am I dreaming of the impossible. I have seen a lot of names of people, on the net, who would be ideal in running something like this and one in particular jumps out at me. Many of you will know him from several different web sites. His name is Dr. Paul Wicks from England. ( Sorry for dragging you into this Paul)............

ALS/MND comments in my Guestbook...

2007-02-02T17:47:00.000+13:00

Over the last few months I have had numerous people signing my Guestbook and saying, ' what a remarkable attitude to life that I have'. I would like to say in return that I have read many blogs and web sites written by people, like myself, with ALS/MND and that I have come away feeling very humble and proud to know you.
You have blogs written by sufferers and care-givers and in most cases beautifully done but regardless of who have written them they are the representation of ones life, their battle over conflict, pain and ever-lasting disability and their fight to be heard by ones Nation/Country.
We, you and I, have enough to do just staying alive with out becoming embroiled in lengthy discussions on what should or should not be done for us. Most countries in the world have some sort of scheme going whereby money is raised for ALS/MND Associations and or individuals.
New Zealand in my opinion ( and it is only my opinion) is sadly lacking in this department and if it were possible I would get National Sports teams interested and have charity concerts, runs and walks for MND and generally get the New Zealand populace involved in raising awareness of what is happening to us.
We, all those who suffer from ALS/MND belong to an elete association and there are more joining every day. So, in my opinion having a blog/web site can only be good for us. It gives us, as individuals, a lifeline ( excuse the pun ) and a means of keeping in touch with fellow sufferers You can share your emotions, show compassion and discuss at length what we would do if in power towards helping all those with ALS/MND, or any disability and to generally make life just a little bit easier for us.
Thank you again to all those who have signed my Guestbook and keep checking in for new updates.............

Footnote...In Wellington, New Zealand we have an organisation called 'Skylight'. Skylight supports children and young people who have been affected by change, loss and grief. Please have a look at their website www.skylight.org.nz

Love....Those three words....

2007-01-24T17:13:00.000+13:00

Throughout all of time we, the human race, have uttered, on a regular basis, three words. Those words regardless of the language spoken have meant so much to so many people that I think the world would come to a grinding halt if we were to stop saying them.
We survive and live according to these words. In a world where so many people have disabilities it becomes very important, especially among the elderly, to not only to be able to say these words that mean so much but to know that they are reciprocated .
In a society where we act on the knowledge that all people have a need to to be loved these words are basic to the way that we live. Without love there cannot be a common ground for the development of family life. There would be no communication, no ability to be able to interact with family members and we as a race would stagnate.
Love is to be found in all peoples, all ages, male and female. It has been been with us since time immemorial. Volumes have been written on this subject. You can find it carved into stone tablets in Ancient times, many films have been made and where ever you go you will find it.
It is with you for most of your life and can be found in the most inhospitable places on Earth. Not only do we as humans live for love we also die and kill for love. Love need also not be relegated to us alone. You will find that most animals have some sort of love, a bond that will keep them together. But peculiar to mankind only there is the love for inanimate objects. We love to give names to things like a boat, a plane or maybe a car. We are capable of loving so many things that the list is endless.

What are these three words that I speak of....in Dutch..Ik houd van u. / in French...Je t'aime. / in German...Ich liebe dich. / in Portuguse...Eu te amo. / in Spanish...Te quiero............ They are of course.. I love you......

What has any of the above got to do with the fact that you/I have Motor Neurone Disease...everything. When being diagnosed with MND you think of all the people in your life who you have said these words to, your partner/spouse, children, family members and friends. I need to hear those words to reassure me that there are people out there who care, who will say ,'I love you' and for myself to know that they mean what they say.

I have that reassurance and would like to say back...I LOVE YOU ALL and thank you....

What do you make of life...

2007-01-21T11:51:00.000+13:00

What do we as humans think of life... Do we take it for granted that we will, despite all the hardship, war, hunger and disease that goes hand in hand with us that we will survive and live to a ripe old age. Do we learn as we grow up that out of all that plagues humanity there is an eagerness, a desire to fight back, among some of us, and that this desire, this striving for a good life, a life free of all the above is to be had at some cost.
The cost comes not in wealth but the lost of will-power, health, dignity and the ability to have what is rightfully yours/ours.......LIFE.
We all love life in many ways and with me it is now the right to be looked at as a person who still has all his faculties, still able to hold a conversation and not looked on as someone, who being in a wheelchair is a wee bit gar-gar. Not so.....Just because I / you, use a wheelchair does not condemn us to a lower standard of living, as a person to avoid in the street or someone to poke fun at.
We are all human and we all have the same basic fundamental right to be individuals, regardless of our sex and age. Who is to say that because I have Motor Neurone Disease I no longer have that right. I DO and so do you. Claim what ever you can out of society and take anything that will make your daily living easier. Enjoy what you can, go out and travel, see the world ( as someone I know of with MND is doing) and know that regardless of the severity of your disease that there is a time and place for all of us in this race that we call Man. Even the simple act of going for a 'walk' in your chair, maybe with your spouse / children or even the family dog can bring to you peace of mind and a breath of fresh air.
It is the fact that you can get out and into this flow of humanity and know, that without any doubt, on your part, that you belong. I BELONG and it is that feeling that will keep me going, knowing as I do that my body is slowly deteriorating, that I will become at some stage house-bound and maybe bed-bound .
But I also know that I am not alone. I have many friends in a like situation and that together we will win, maybe not the fight for life, but the right to be one of the human race and face whatever comes our way with determination and dignity and to be proud of who we are ..

If we have the love of family and friends and their support what more can we ask for in life...

My Wheelchair......

2007-01-11T21:35:00.000+13:00

Imagine if you can a world where every man, woman and child was confined to a wheelchair. Where every building, all means of transport and all occupations were adapted for ease of living. What would the average lifespan be of a human in that sort of environment. Where a person who was able to walk on two good legs was considered to have a serious medical condition and the ability to walk was unnatural.

The implications and ramifications of such a world are in the realms of SiFi and would be in the extreme to say the least. When you consider how hard it is in today's world to even negotiate a simple footpath and to cross a road, to get into a public toilet or restaurant or to be able to drive a car. When the reality is that to have a wheelchair you are considered to be self reliant and to be able to look after yourself.
That sort of thinking is OK if you have the self confidence and the ability to be able to do just that, look after yourself. Because if you don't, who will. How many city councils around the world get repeated requests from wheelchair bound persons to do road and footpath modifications, make buildings easier to access or to even have a house suitable for wet areas.

How many people in our situation have to dive into what little savings they have to be able to have the quality of life they require, to have the support of local councils to make wheelchair living a reality and to know that any requests for modifications will be heard and acted on. To use a chair, manual or power on a public footpath would be the biggest headache that faces most people. How do you go from path to road and back again with out damaging not only the chair but yourself in the process and at the same time not be a menace to road traffic and other people using the footpaths...I think you learn, like me, that it is a case of self preservation. And maybe a little humility.
Where I live there are large numbers of people with Power chairs and Mobility scouters and many different makes and models. If you are lucky enough you have a team of people who will help set the chair up for you. Once that is done you are on your own.....

I now have a 'Power Chair"...a Pronto M71 Sure Step and love it. It was alright having a manual wheelchair but when you upgrade to having a motor under your legs, wow, what a feeling. This has now given me, like anybody else in my situation, a whole new outlook on life. I am fully independent ( as long as the battery lasts) and now able to participate in anything I choose to do. I just have to make sure that I am prepared for when I do go out that I have a means for calling for help, protection from the weather and that I don't act like the footpath is all mind. ( I mean to say that I could but where would it get me ).
Alto I have had the chair for only a few days I can see already that it will be the means to an end. To live in a society where you are accepted as a person in your own rights and to be treated as such is really great.
I intend to enjoy my new freedom from restriction of movement ......WHEELCHAIR POWER...YEAH

Footnote.... Earliest found image of a wheelchair was found incised in stone on a Chinese Sarcophagus in the 16th Century.

The Wedding

2007-01-10T16:37:00.000+13:00

30th December 2006

Photo on the stairs is Isaiah, my son Phil, John, his best man Andy and myself.

It was a great day. There was a very early start for Tania and the two girls as they needed to have their hair and make-up done. John had stayed the night with a friend and arrived back at the house with Isaiah about 9am. Got all his outfit ready and waited for the best man to turn up who was going to follow us to the Wedding Venue. Jan's sister Mary was also picked up by John .

We arrived at the venue just on 10.15am. I was taken by car with my wheelchair down to the garden where the wedding was going to take place. Everybody else made their way by foot and then it was a matter of waiting for the bride to turn up. Shianne was also bought down by car. The weather just before Tania turned up was overcast, cold and looking like rain any minute. A black cat walked down the gravel path just before Tania, went over to where John was waiting on the lawn and the Cellebrant said "What a good omen".......

Tania came into view looking radiant in her beuatiful gown, stepped onto the lawn and the weather changed into brillant sunshine and stayed like that for the rest of the time we were at the venue. Both Tania and John were very happy and the children were also good as it was a long day for them.
Jan and I would like to take this moment to wish Tania and John, long life, Happiness and to be not only man and wife but best friends. We are very happy for them....
MAY YOU GROW OLD TOGETHER AND YOUR LOVE NEVER FALTER...MAY YOUR CHILDREN HONOUR YOU AND KEEP YOUR FEELINGS FOR EACH OTHER STRONG AND PURE. LOVE LIFE.........

19th December Xmas Dinner

2007-01-03T17:20:00.000+13:00

On the 19th December 2006 I along with Moira-Anne were picked up by the New Zealand Police and transported to the 'Skyline Restaurant" at Number 1 Upland Road Kelburn, Wellington from the 'Te Omanga Hospice' in Lower Hutt. Patients of the Hospice were being shouted Xmas Dinner by Peter and staff of the 'Skyline' and what a wonderful day it was. The weather was perfect and so was the meal.
On behalf of myself, Moira-Anne and patients of the Hospice many many thanks for making this a day to remember.

This last year......

2006-12-17T10:53:00.000+13:00

Well, here it is almost Christmas and for me (my first of extended life) will be a time for family and friends to get together. It has been a strange year, not one that I would have chosen for myself but in that I had no choice. And that is the way things go.You may plan for certain events to take place but the reality of the exercise is that you take what ever is thrown your way.
I have had my ups and downs, like you all, and have conceded that my life, as I know it is no longer in my court, so to speak. Family have been shocked at what has happened as likewise friends. And like so many people out there some were not sure what MND was. It is a disease that so often is confused with MS but as we know the two illnesses have separate paths.
It has been a time to get used to the fact that my legs, in all probability, will be the first to go and to that end over the last month have noticed that they are getting weaker all the time. I have had six falls, the last two only in the last week ( and on the same day ) and they could have been somewhat nasty as my left foot tried to roll forward and at the same time the knee gave way and down I went, backwards. Like my friend Moira-Anne we do these falls in such a manner that we do not hurt ourselves, and by all rights we should . My wife saw one of them happen and she said it was so graceful and almost in slow motion.
Also have had some problems with the fingers on the right hand cramping up, more so when I am on the computer. Jan and I have had several trips up the North Island to New Plymouth to see our son John and his partner Tania ( not long now to their wedding ) and her three children. We also did a family reunion down in the South Island and that really bought it home to me just how this disease affects me. The emotional roller-coaster ride that I went on the four days we had at the reunion was amazing...the tears were almost continuous. But having said that it was most likely the best time I have had since being diagnosed. And having a wonderful wife along side me sure helped.
All in all it has been a time of reflection, decision making and coming to grips with what I have. And the time for Jan has in all probability been harder for her. What with trying to run a shop almost single handed, staff problems and trying to make sure that yours truly behaves himself when she's not at home ( doing the vacuum cleaning yesterday almost killed me) is not the easiest thing to do.
So, walking, cramping and crying aside, how am I. I am at this moment in time quiet happy, calm and looking forward to a new power-chair which by the sounds of it I will have by Christmas , a wedding to go to and Tania, my daughter-in-law to be has told me I am having a dance with her on the day, that should be interesting he says with much laughter.
I still have my afternoon tea one day a week with Moira-Anne, a wonderful woman also fighting this disease.

And above all else I remain positive and look to the time ahead of me, not as something to dread but as a time to help those like myself enjoy what ever time they have with family and friends, get out into the world, if only by the Internet and to raise, somehow, peoples awareness of Motor Neurone Disease.
ENJOY YOUR CHRISTMAS AND HAVE A HAPPY NEW YEAR.....

Christmas Cheer.......

2006-12-09T15:44:00.000+13:00

Its that time of year.....

Jan and I would like to take this time to anyone reading my blog to 'Wish you and yours" a very 'Merry Christmas and a Happy New Year'.
The local branch of our MND Association had a Xmas morning tea. A very nice time had by all who attended.

I intend to make the forthcoming year a time to remember, to take photo's and compile family histories for those who I will be leaving behind. It will be a year NOT to be sad but to think of all the good times had by me and my family & friends, old and new. A time to reflect on what could have been and a time to enjoy what I have.
To continue 'talking' to people on the Internet and make more friends. To do my best in trying, somehow, to raise awareness of our condition here in New Zealand, but above all else keep my positive attitude strong.
So, I will also take this time to thank everyone who have left a message in my guestbook. Some of your messages have been truly touching. I am just a guy telling people how it is and I think for anyone to do what I am doing, with honest feelings and thoughts is really an indication of the true spirit of a human being. I am but one person in a world where MND/ALS is prevalent and if by writing a blog like this helps someone, then so be it.....

Tears.........

2006-12-06T21:46:00.000+13:00

Tears are like early morning dew drops...

They are the window to how we feel at any given moment in time and an indicator of the bodies well being or weakness. They have been described as the 'Jewels of Life' and you will see them where ever you go in this world of ours.
Tears can be found in all of humanity and it is with tears that we, as humans, show our anger, sadness, despair , joy, happiness, laughter etc... Where does it all come from.
One of the conditions of our illness is that ones emotional levels can be a lot lower than usual and with me personally has been quiet obvious. Its just another facet of my everyday life that I have had to accept and I can live with that. I have had my fare share of tears, openly and in public.
And it is a fact to of life that in some parts of the world grown men do not like to be seen crying in the presence of other men or women. But, we are growing out of that attitude and public awareness in most parts of our society will now accept public showings of emotion in men. I am not ashamed to show my emotions......
As a note of interest...no matter what the colour of your skin, be it white, black, yellow or brown, tears are made up of the same clear liquid.
Tears, like laughter, can be contagious and if we, as a race, are unable to release our emotions in the form of crying then what other way can we do it.
So, do not bottle in your tears, cry openly, with family and friends and you will find ( I do anyway ) life is so much easier, even if you do have MND/ALS. It is a great way to find relieve.

Soon you can shop for synthetic tears Shirish Joshi

AS every one knows, tears play a vital function in helping to lubricate the eyeball and keeping it clear of irritants. They also help us to keep our eyes healthy.
Dr John Tiffany, from Oxford University, UK, and his colleagues have discovered the unique combination of ingredients that make up human tears and have patented the combination of proteins and fats that are present in them.
Tears are drops of clear saline fluid that are diffused between the eye and eyelid by the lachrymal or lacrimal gland. They moisten the membrane that covers the eye and facilitate the movement of the eyeball and eyelids.
Tears are also secreted as a reflex response to various stimuli, including irritants to the cornea, like the chemicals given out by onions when they are cut and peeled, bright lights, and hot or peppery substances like chillies in the mouth.
Tears secrete anti-bacterial agents that break down harmful bacteria before they can cause infection. They also provide oxygen and nutrients to the cornea, or surface of the eyeball, which has no blood supply.

Dr William Frey working at the St Paul-Ramsay Medical Centre in Minnesota, USA, has carried out some in-depth research into the chemistry of tears.
Recently, Frey’s team discovered several hormones in both tears and lachrymal glands that are known to be released by the body in response to emotions and stress.
The discovery of the particular combination of molecules that make up natural tears could result in the production of eye drops that are better able to perform all functions of natural tears.
Dr Tiffany hopes to use his formula to develop new medicines that will eventually help people who suffer from an inadequate supply of tears.
Dry eye disorders are painful and annoying, and eye specialists have no complete cure for them. The currently available eye drops only soothe and lubricate the eye in various ways.
However, Dr Tiffany feels that much more research and clinical trials have to be carried out before the product can be made available to the public. Extensive safety tests will also need to be carried out.
Synthetic tears would not be suitable for people who suffer from milk allergies, because they are based on proteins found in cow’s milk. Anyone who is not allergic to milk can use synthetic tears. But the tricky part is that not many people know that they are allergic to milk.
The product will also have a practical shelf life as proteins can easily break down.

How Do I Feel....

2006-11-26T12:12:00.000+13:00

What makes us tick...
Our bodies are a strange mixture of complex organism's, nerves and muscles all doing what they are supposed to do. All governed by our brain. From birth we learn to talk and think, formulate ideas and put them into action. We contemplate what could be and learn to accept the reality of everyday life.
But when the human body begins to break down, what then. How do you express in words the feelings and thoughts that flow through your body twenty four hours a day. You have ALS/MND and plenty of time to ponder just what is going to happen. You eat, sleep and breath on your bodies assumption that things will come right. But that's not to be.
People react in many different ways to the knowledge that they have an incurable disease but its in the way that you do it which makes all the difference. There are some , regardless of age or sex who do not and will not accept that they have this condition. They may be young, married and have small children. What can you (I) do to help them. You can not. But, you can be there for them in the advent that help at last is needed.
You will find that most people with MND have put their priorities and their life's in order. They draw around them a strong support group of people, family and professionals, and even have events like "Walk to 'D' Feet" ALS/MND. These events are very popular in America ,England and Australia. I would like to see such an event happening here in New Zealand.
I have reacted to the knowledge that MND is here to stay, for me, and is a condition of my life now. There are many changes that I and my family have had to face but despite the fact that my life and everything connected to it has changed, I AM STILL ME.

I am still the same inside this shell of flesh, blood and bone. The physical aspect of my life has changed but I can still feel pain, express delight and happiness, taste and see, go out with friends and family and generally enjoy life. In the scheme of things I am the same as everybody else but have been put onto a different path.
We have the presumption that the world will keep on turning regardless of how we feel. That Nature will realize her mistake and put us back on the straight and narrow path that we walk ( if we only could) along but in this instance she has made a blunder.
Within my self I can still do the 101 things I used to do but the reality of it all kicks in and you ( I ) learn to change the order of everyday life , not once but every single day.
We contemplate life and all of its frailties, our illnesses, our love and hatred of our bodies and realize that we are but just one person in a sea of many. But one person, one voice can raise, given the right conditions, a consciousness, an awareness of Motor Neurone Disease in the mind's of the human race and just maybe ,we, you and I can come out on top .
WE CAN BUT DREAM....

To have or not to have...

2006-11-19T23:34:00.000+13:00

That indeed is the question.....

We are a resilient race of people, strong in out fortitude and our determination in the face of adversity to stay alive and healthy despite everything that is thrown at us.
There need not be a lack of food or hygiene for you to catch MND. It does not matter in what state of health you are in or what age you are. We like to believe that we are immune to all of the illness that has plagued our world but the human body is infallible.
We are like dandelion seeds floating in the breeze, carefree and and unmindful of where we land, but land we do. And if you are lucky you strike a good patch of soil, rich and free of bugs and grow up to become strong and healthy and have a good life.
But, on the other hand you may land in soil that is barren, infertile and full of bugs and if you grow at all, find that you have become like the soil you landed in.
But who is to say that either of these situations lends itself to MND. The truth is we don't know and despite all the research going on around the world it may be a very long time before we find out what the cause of MND is. ( if at all )
Update on me....
I like to think that I have a strength of body and firmness of mind and that I will live on for quiet a few more years yet but know that the average life span from diagnosis is fourteen months. I was given two & a half years from the 15/12/05 but am determent that I shall be around a little bit longer than that. ( if my body lets me ).
Regardless of the fact that I seem to be progressing slowly ( I think ) and with my hands ( mainly my right ) cramping up at inopportune moments ( ie, eating in a restaurant ),legs packing up and a few more twitches here and there I am enjoying life.
Last week I was measured up for a power wheelchair which I may have before Christmas. I now have a Laptop/notebook ,never had one before, enjoy my food ( eat ice cream and chocolate like its going out of fashion ) love sweets and drink numerous cups of coffee during the day.
I spend a lot of time thinking about what to say in these entries in my blog and throughout remain positive. For someone with MND or any disability, being positive is one of the main drives in ones makeup and it is that which will keep me going through the years that I have left, however many there are.
I look at myself in the mirror every night and say..."Well, Robert old boy, tomorrow is another day and I will stride ( no pun intended ) out into this world that is being torn apart with wars, hunger, strife and pain and in my little part of it enjoy what I have, with friends and family.
I did not want to have Motor Neurone Disease but have it I do....

Friendship on the web..

2006-11-18T11:15:00.000+13:00

This is just to say thanks to all the people that I have met on the Internet and who have read my blog. Friendship can be made and enlarged on when you share a common bond like MND/ALS and when you can 'talk' to someone in real time and have a joke or share stories with each other.
I have met people from all over the world via the Internet and it is the companionship that links us all together.
I would also like to say at this time a special big thanks to Moira-Anne for being the person she is. We only live a couple of minutes away from each by car but I consider her to be a true friend and when you have a like ailment it draws you closer together, like it has with all of us.
The chat room that we go into is like a common room and is a great way to 'just let it all out'. No matter what part of the world you are in we are all as one. Friendship counts..

A year further on.....MY LEGS

2006-11-17T12:07:00.000+13:00

On the 15th next month it will have been a year since being diagnosed with MND. Where did it all begin....
These last 11+ months have been, shall I say, interesting. The only outward sign of anything wrong with me is my walking. The visions I have when I think back over the last 60+ years of my life.....
Walking is something that we all take for granted. I mean to say that it is a basic foundation of life that we are able to do this, but when that right, that ability to do so is taken from you ones hope's and desires, ones ambitions in life to do everything that is associated with walking is removed all that is left are your dreams and memories of happier times.
I have walked in Australia, England and Scotland and many parts of Europe and Africa & Japan .....
Walking is such an everyday part of life and ones expectations that your legs will be with you for many years are just that...You do not expect to be with out them. They are so much of what and who you are...
Your parents watch as you take those first tentative steps along the path of life. They watch as you learn to walk, to run and ride, swim and climb and all the every day activities that go with using those wonderful appendages called legs.
My legs have taken me through the years of childhood to adulthood, and they have served me well and when I finely loose the ability to walk I will accept that decision of my body and look forward to another dimension of life. A life where my legs are replaced with a wheelchair...
And what are we going to do on the 15th next month...we will have a party to celebrate the first year of my extended life, of my still being with family and friends...WHY NOT indeed

LEG....either of the two lower limbs in humans, or any similar or analogous structure in animals that is used for locomotion or support... or what I would call a multi-functional device that we use and clothe in all manner of garments.

A New Home......

2006-11-08T19:27:00.000+13:00

Well,here we are in our rental house with the only stairs at the front door and three at the back. Moved in about 4 days ago and still looking for items in boxes.
We plan to be here until the early New Year then look for a permanent place. And we have our son John and Tania here for a few days as well and enjoying their company.

It is now almost two weeks since we moved into here and we are still looking into boxes for items that we have no idea where they are. The joys of moving house....John and Tania have gone back to New Plymouth and we will see them again on the 23 December with the three children. They will be with us for Xmas and then they will be getting married on the 30th December. We are all looking forward to that very much....

No more stairs !!

2006-10-22T17:15:00.000+13:00

Well, the big move is almost here. Yeah !! NO MORE STAIRS. They have been getting harder every day to get up. Going down is not so bad but have still had to watch where I put my feet. Today is Sunday 22nd October 2006 and the packers are coming in on Tuesday to pack us up and we move out on Wednesday.
We are going to rent for the moment but having said that will have to wait till the house we have found has been cleaned. So, in the meantime we are going to stay with our very dear friend Moira-Anne. She and I get on like a house on fire and that's the way it should be. Its almost like there is a rubber band connecting the two of us together. I have afternoon tea with her once a week and we talk about everything under the sun, MND included.
This is the first time I have put an entry into my blog for some time. I have been very tired lately and the cramping in right hand seems to be on the increase. Also have a little bit of cramp at odd times in both arms. Legs are also getting weaker.
Have bought myself a notebook/laptop and will be using that in the next month or so as we continue to look for a house to buy. I have two computers but they will both be in storage.
I continue to put my BEST foot forward and remain very positive....

The BEST medicine in the world...

2006-10-12T17:46:00.000+13:00

Laughter..

How do you define laughter...I don't think you can. But I will give it a go..

It is something that we humans do with such variation and with so many inflection's in the way that we produce this wonderful sound. It has been with us since the dawn of time. Early man must have laughed as much as we do and for all the same reasons.
To sit back and listen to a small child laugh and then to hear that sound start of an avalanche of laughter among other children and from that to hear yourself joining in is great. You know the old saying..'from the mouths of children'..
Laughter is not bound to any one race of people. It is not affected by age or language, race or colour. It covers all continents and is contagious in the extreme. There is no cure for laughter and I for one would be upset if there were.
It is with us from the time we learn to talk and remains our constant companion. And is with us when we most need a release valve and to those other time when the only course is to laugh.
Laughter can bring two people together and through the years strengthen the relationship that they have. It can bind many cultures into one and is the only verbal form of sound (that I know off ) that is universal in its understanding.

I have Motor Neurone Disease and I can laugh........CAN YOU !

How life changes....

2006-10-08T12:00:00.000+13:00

How life changes...So many things we take for granted.....

We evolved from the "Primeval Soup" of life on a new world which would be called Earth. . Fighting our way upwards along the Evolutionary road and becoming the dominant force over other species because we had a brain, legs and arms.
We developed a life style and social behaviour befitting our intelligence but in the long climb upwards and believing in our collective dominion over all forms of life, we blew it completely.....
Mankind is the only species on this planet that will kill or maim just for the sheer hell of it. BUT, having said that Nature does just as good a job. She will indiscriminately pick people out at random and regardless of race , age or creed give them something they didn't want.

DISEASES...In many shapes and forms. What does it matter if you live in a dirt village in Africa or India or in the frozen wastes of Alaska. On the high rolling plains of Mongolia or in a upper class apartment in any city on Earth.
You can be destitute or have more money than you know what to do with. No country is spared. Diseases have ravaged and pillaged our world for hundreds of years and medical science is still struggling, still coming to grips with what we have.
And that is where you and I come into the picture. You have been diagnosed with Motor Neurone Disease. The world as you know it comes to a grinding halt and everything crashes around you. It doesn't have too. ! We ask the question...."Why me, what have I done to deserve this". You are told that there is no cure. If you are a person who is capable of accepting a life changing condition but also ready to fight this disease and to make the most of it and knowing that you may be able to prolong your life , if only for a short time and by coming to terms with what you have and accepting the many forms of help that are available life will be a little bit easier for you.
Its all out there just waiting for us to say.."Yes, please help me".
But it all goes back to that "Primeval Soup" that we came from. In that seething cauldron of liquids, gases and magma, huge electrical storms that lasted for thousands of years and volcano's gushing forth there came, out of all of that a little known creature. Lets call it 'Man'.. As he grew upwards to what he is today he bought with him, out of that 'Primeval Soup' a whole host of other life forms, many of which may have laid dormant for thousands of years.. We will call them diseases.
In many parts of this highly developed and highly socialized world Motor Neurone Disease is still unknown. Many Doctor's are still only finding out what it is and many have still never heard of it. The human body is and shall remain a mystery. There is talk of 'cloning' a human being, God help us, that may or may not happen. But will it stop this eternal fight for survival from the effects of something like Motor Neurone Disease...
I DON"T THINK SO

The way we live...

2006-09-30T11:36:00.000+12:00

Motor Neurone Disease.... It conjures up a world full of people struck down with a condition that some would equate with the plague. Its not quite as bad as that but its not good either. I have MND and its now coming up to 10 months since I was diagnosed.
It is to those who have this condition, disease, call it what you will, this roller coaster ride towards self-destruction, to an end that might only be a few months in sight or twenty - thirty years down the road that I put pen to paper if you like......

I can not say that I haven't struggled with my diagnosis. But like so many others out there I have learned, day by day to cope with what I have. Thankfully I can still walk, only just and with a stick. I have cramping on and off in both hands, mainly my right (I am right handed) and I have only fallen four times without hurting myself.
But what is the cost to me and my family, to the way we live, to the everyday goings on of life in general. Because I was working in a situation where there was hot fat and and not much room if one fell and with my balance being that I was no longer able to support myself in an upright position I had to retire. I still sleep OK most nights, no problem there. I have a tea trolley (picture in earlier entry) which is a must for me to carry cups of coffee etc.
There are two sons who have had to adapt to the news that I have an incurable condition. I can still do most things that 'normal' people do like eating, bathing or even going to the loo. BUT FOR HOW MUCH LONGER.
And I have to ask, how do you define normal where in a world so much changes day by day.
We ( I ) live in a world of conflicts, a world that daily gets torn up and spat out in Newspapers, Books and on TV. Every form of media will at some time have an item on Motor Neurone Disease. Most people will not have a clue as to what it is. Many do not want to know. But to those who care, to those who know that the only way around this condition is to communicate to those that have this disease that there are people out there who will do all in their power to provide the support in whatever form it is needed.
We are at best a 'Multi-functional" race , We can openly help those who need help, offer help and support to those who are in denial of their situation and at the same time do what we can to in some small way to raise funds for research into finding a cure.
Mankind has made it possible by spending many millions of dollars to send man to the four corners of this world, to explore the Oceans , fly into space, land on the moon and even send small space-craft on voyages that will last many thousands of years into deeper space.
We have conquered many ailments that have bereft the human race. Ailments that have maimed or killed in vast numbers over hundreds of years men, women and children. Why do we as a race spend so much money on new computer's, phones and other devices over and over again. How will any of this help us. Life goes on, it must go on and we, ( you and I ) have to live by what is available in the way of help.
In those parts of the world where local communities get together and have public walks or runs to 'De Feet MND' and even by individuals to raise money for research, I thank you. And I would like to think that I, by expressing my thoughts and feelings in this blog am also helping to raise people's awareness, not only here in New Zealand but in all parts of the world about Motor Neurone Disease.
We have reached that stage of evolution where we as a race need to help ourselves to a better kind of life, a life where disease is unheard off and where every body has that quality of life we all need so much.

A child's view....

2006-09-29T13:39:00.000+12:00

This is a story about a child, not any child but one with a disability of her own, Cerebral Palsy. Her name is Shianne......( in other entries on this blog) This happened during our last visit to the family...

Tania had told her children, as much as they could understand about what was happening to me. The two younger ones had a grasp of it but Shianne , at eight years of age took the information to its logical conclusion.
She knew that I was going to get sicker where-as she on the other hand was going to get better, if she had anything to do with it. With Shianne it is both legs and one arm that are affected by her condition. She is like a beautiful butterfly emerging from a cocoon, ready to spread her wings and fly out into the world.

The rest of the family had gone outside and Shianne and I were in the lounge. She was sitting on the couch and I was at a table. She had been silent for some time and then looking at me she said, very quietly, with a knowledge and understanding far be yon her years....
"Poppa Robert, are you going to die"..............
I answered back, just as quietly, with one word, "Yes".
She held out her arms to me and sitting down beside her and putting my arms around her we became as one, en capsuled in a moment of time. Nothing else mattered to me.....
In a world full of disease, hunger, Wars and natural disasters there are moments of Beauty, Wonderment, love and understanding. This was one of them. There was no need for either of us to say another word. It was but a matter of a few minutes that we sat like that, minutes that went far be yon the time barrier. We were two kindred souls, knowing and understanding what was taking place with our bodies. She with the knowledge that there is no way out for me and I knowing that this young girl, soon to be a woman, was going forward, fighting every inch of the way upwards and outwards wanting to make a name for herself.
The moment passed us by as the family came back inside..... I relayed this story, briefly to Tania, Shianne's mother just a little while ago and finished up by saying to her , "Treasure every moment, every hour that you have with Shianne, she is a wonderful person".
Any disability can be frightful, but there are fighters out there in this world and Shianne and I are but two of them................

MND & Fatigue

2006-09-23T15:39:00.000+12:00

Every man, woman and child, every living thing and every object ever made by mankind on this planet suffers from 'Fatigue". We all have extreme's of fatigue, some more so than others. Case in kind were the "Twin Towers" in America. It was fatigue which helped cause the fall of the towers killing many thousands of people. Planes, buildings, cars, you name it , they all have fatigue.
Fatigue is watching a baby trying to stay awake but unable to do so. It is like an Earth-Quake that splits the land asunder from under our feet. We are no different but because we are in a weakened state anyway we are so more vulnerable.
But with those of us, like me, who get tired very quickly, fatigue is what gets to us most. It can creep up on you and lay you flat out before you know it. Fatigue is not being able to get out of bed, get dressed, make a cup off coffee. So many things we are unable to do because of fatigue.
I only have to walk (with a stick) down our driveway and I am fatigued. Just the simple act of drying a few dishes and I am fatigued. With MND it is fatigue more than anything else that weakens the body leading it to the end that we know is there.
Fatigue and stress go hand in hand. But to combat it you have to pace your-self, know your limitations of what you can and can not do. ONLY you can do this, not your family or care carers. ONLY you. You will know when its time to stop trying to do those 101 things you have always done. You will know when to accept the the fact that someone will be there when you need them to be able to bath, eat, drink and yes, even be merry.
"Accept the fact also that you have MND and one of the conditions of this is fatigue."

I HAVE.

What is life...part 2

2006-09-23T11:24:00.000+12:00

You come into this world as a baby, naked and vulnerable and grow to become a person who despite your location, upbringing, creed and colour give of your-self everything that you have to lead a normal life in a world that by today's standards is not normal.
You are but a small cog in a "wheel" that turns relentlessly onwards. You don't ask to be nominated for something that by all accounts is on the increase, to be shackled to a life that now seems daunting in the extreme.
But when the "wheel" hits a bump in that road of life you are thrown upwards and outwards to a future that at first glance is deprived of anything worth holding onto. At what point do you sit back and look at what is happening to you, to your body which seems intent on destroying itself, your life in general.
When do you take the upper hand and say, "No, this is not going to defeat me, this condition, disease, call it what you will". I shall make a stand (no pun intended) and show this world that there is a place where I will fit in, to be as independent as possible but at the same time to accept that there are people out there, old and young who in their own way will try to reverse or slow down this "wheel" that turns forever onwards.
You (I) are but one small cog but when you link up with other small cogs you become a whole. You have a future, a life to live regardless of how bad your condition is and with the help of many many people you will have and achieve a quality of life that is befitting to you.
What is life....It is the love and caring of those around you, of family and friends, of being treated as someone who in their own rights regardless of the condition of their body is a living, breathing human being. I have MND but it will not stop me from enjoying what I still have and to make the best out of a bad situation.

Family Get together

2006-09-20T17:26:00.000+12:00

Family reunion.

About two months ago I received an email from a cousin in the South Island of New Zealand. His name was Steve. He was suggesting a cousin get together with family members coming from all parts of NZ. It has been just on 40 years since I had seen any of my cousin's so Jan and I made the decision to take part. To see more photos http://www.flickr.com/photos/mymnd/
We left Upper Hutt early last Thursday morning and caught a plane to Dunedin Airport where we were picked up by Steve and Marlene (his wife) , in photo on the right. During the course of the next few hours we had lunch and then afternoon tea with my cousin Jan, above left.
We were then taken to Balclutha where we were to spent the next four wonderful days with my cousin Val sight seeing and being taken to the family gatherings.
It is at times like this that you realize how important family are. I was shown nothing but the up most love and concern. And with my feeling's running very high there were alot of tears, not only on my part but from other family members.
I and Jan now feel that there is a bond between us all. A bond that transcends not only time but distance as well. As a child you reach out to those around you for love and help in those moments when you hurt and your body won't do as you wish. When you are diagnosed with MND or any other condition, you as an adult do the very same thing, YOU REACH OUT and if you are lucky someone will take that path that so many other people have done in the past. I can now reach out and touch the hands and hearts of all those people who matter to me. FAMILY.. There are times when you could do without them, everyone has that feeling but, when family come into your life at a time when you most need them, where ever they may be , then you are are one of the chosen few.
And most importantly, family need you. We found that out in the time we had down South. I was a link, not only to my immediate family but to all of those who had passed on. Family photo's were brought out and poured over, questions asked and names put to faces. Photo's were also taken to be added to family albans.
If I am lucky we will do this again. Soon.......

Life is what you make it out to be...Part 2

2006-09-10T14:43:00.000+12:00

So, you have Motor Neurone Disease. There are many paths in our life that lead us in different directions, of that we can be certain. This path that we are on will lead to an ultimate end. That also is certain. But who sets out these paths down the road of life. Is it "Mother Nature" or is it in our genes.
I for one have been lead onto a path of self destruction, the same as everyone else who has this terrible disease but I am not going to go without fighting. What paths do our loved ones, partners, spouses , children follow once we have passed on.
There are several that I can think of...The path of indecision - What do I/we do now that he/she has gone. Then there is the path of...Lets get on with life - with your partner/spouse starting all over again with your blessing. The path of...Happiness - Your loved one is no longer living in a world that has denied him or her that quality of life that we would all like and deserve to have. No longer in pain or unable to even do the basic movements in life like holding a fork.
Indecision...Lets get on with life...Happiness. These are but a few of the many hundreds of paths that you can follow if in the end YOU know that whatever path you take you will be at ease with the world and those around you.
Since being diagnosed with MND I have made a lot of friends, people in the same boat as myself all over the world and this is another path that you can take while you are still able to do so. The path of...Friendship - This path goes a long way to helping those who don't know where to turn to next. If you live in an area where social contact is not an option, there is little or no support and your neighbours don't want to know you for whatever reason then this path...Friendship - is the path to get on. There are so many people out there who are willing to be your friend and it doesn't matter that you live on the other side of the world or just down the street.
So, put your best foot fore ward (I wish I had a best foot) and show the world that there is a path and that the death of a loved one need not be in vain. BE PROUD OF WHO YOU ARE. We will D' feet MND. Maybe not in my life time but we will acquire the means to do it.

Great morning tea

2006-09-07T20:03:00.000+12:00

Hello folks.
Well, it was another great morning tea put on the Wellington brunch of the MND Association. There were over 12 people there today, the weather was good and it was enjoyed by all.
We also had the added bonus of a talk by Mary Harmer of the "Te Omanga Hospice". It was all very interesting and I think helped in some way to ease the feelings of those present about what happens at the Hospice.
I know when Jan and I made the effort to go and see the Hospice some months before we were very impressed by the way the staff stopped what they were doing to talk to us and made us feel very welcome. Also put completely at ease by Mary Harmer who showed us around the building. We were very pleased that we had gone in and made ourselves known.
When and if I need to go in we know that I will be treated, not as a patient, but as a person. I will be given the care and dignity that the Hospice is so very good at.
In the photo above we have Mary Harmer (of the Hospice) and Helen Milloy taken at this morning tea. I have mentioned Helen in previous entries. A wonderful asset to the MND Association.

Some more information..

Te Omanga Hospice Achieves Accreditation StatusMonday, 4 September 2006, 10:04 amPress Release: Te Omanga Hospice 4 September 2006
Te Omanga Hospice Achieves Accreditation Status
Te Omanga Hospice today announced that it has achieved accreditation from Quality Health New Zealand, the New Zealand Council on Health care Standards. Quality Health New Zealand is the national accreditation body for hospitals and other health and disability services.
Mrs Biddy Harford, Te Omanga Hospice’s chief executive says, “Receiving accreditation recognises the high standard of care we strive for and our commitment to continuous improvement. It provides an independent assessment of our services by a team of qualified health professionals.
“Accreditation has involved the evaluation of all aspects of the Hospice’s performance against standards of client rights, health care management and safety. It has been very affirming experience for all those involved with the Hospice.”
Accreditation surveyors examine the consumers focus and cultural appropriateness of the services, the multidisciplinary treatment and care of patients, management and clinical systems, the safety of services, personnel and facilities, leadership and governance of the organisation, and the commitment to continuous improvement.
Te Omanga Hospice is a charitable trust that has been providing care and support to those living with terminal illness throughout the entire Hutt region, including Wainuiomata and the Eastern Bays, since 1979. It also provides care and support in the Wairarapa through its outreach programme based in Masterton. The Hospice supports over 450 patients and families each year.
Being accredited is a requirement in order to receive District Health Board funding. This funding provides some
$2.1 million towards the annual cost of $4.4 million for the programmes run by the Hospice. The Hospice has to fund the shortfall from the communities it serves and is reliant upon the support and generosity of people throughout the Hutt and Wairarapa regions.
“The communities we serve can have confidence that Te Omanga is providing excellent standards of service and safe care to its clients and their families,” Mrs Harford said.
ENDS

Another wonderful....

2006-09-03T11:38:00.000+12:00

Here is a link to another wonderful web site on a person who is living with MND/ALS. Aimee Chamernik, you have to be admired.

www.askaboutaimee.com

And also to a woman putting up a great fight. Jeannie.
http://uk.geocities.com/jeannie_25als@btinternet.com/

Caricature on MY life...

2006-09-02T20:31:00.000+12:00

Where does one begin.....You are born....You live....You die. Nothing is more certain than those three moments in your life But, are they. Does Mother Nature step in and say to you along the road of life ..."Don't get to comfy, I have something else in line for you".
I've had a good life, busy, full of exploration with trips overseas and around the world. I've done all the usual things that most people do but it wasn't until I was in my thirties that I found the interest in learning to drive.
Oh, when I think back and wonder what I could have done, what I could have seen in my wandering around the world had I been able to drive all those years before, but, that is all in the past. And why the interest in learning to drive...more on that soon. *
I have always been as healthy as a buck rabbit with the usual scrapes and bumps that happen through life. I've worked hard and in many cases long hours including night shift.
* But then one day my life changed (for the first time) . I met a young woman (who had a car) with whom I fell madly in love. I proposed to and married her. She was my Princess in life. Nearly thirty years later and my feelings are still the same. We have a family and Grandchildren. We have bought and sold houses, worked for other people and worked for ourselves. The last two years have been very busy as we had bought a Gourmet Burger shop, but then things started to happen, my walking started to deteriorate and then one day that Grand old Lady, Mother Nature stopped to tap me on the shoulder and said, "Remember, I had something else in line for you, well, NOW is the time". December 15 2005. A day that will remain with me for whatever time I have left in this wonderful, crazy world.....my life changed again. (for the second time.)
I had MOTOR NEURONE DISEASE

WHAT IS LIFE.....Part One

Life is a continuation of being born, learning to speak, walk, run, loving and being loved. Life is not getting down from the table until you have eaten your greens, going to the dentist and having the wrong molar pulled out. Learning to play sport, drive a car, fly a plane.

Life is being in the middle of Scotland on the other side of the world and someone tapping you on the shoulder (NOT Mother Nature this time) and saying,. "You're one of the Coutts boys, I know your mother".

Life is whatever you make it out to be. Hope, Hurt, Love, Despair, Anger...all the things that matter to us frail humans, because in the long run life CONTROLS you, Heart, Body and Soul. We can not foresee the future (just as well) so to be diagnosed with an illness that is terminal is just one of the many paths that we (I) have to go down.

So as I walk (Metaphorically speaking) down this path to whatever she (Mother Nature) has in store for me I will have to relearn many of the basic steps of life, learn to adapt and to accept that there will be many things I will no longer be able to do, even the simple act of breathing.

Many of us in this condition cannot accept this quirk of nature, this degrading of our bodies, BUT, we can learn to live with it. If you can do that then however many years you have left, be it six months or twenty years , your life will continue to enrich all those people around you who love and need you as much as you love and need them.....

LIFE is what you make it out to be....Get out and enjoy what time life has given you.

Our Son.....

2006-08-28T21:01:00.000+12:00

Latest "Family" photo's of our eldest son John and Tania with her three children. In the photo on the left we have Danielle 7, Shianne 8 and Isaiah 4. Jan and I have a very good a relationship with Tania and the children whom we saw when we went up again to New Plymouth three weeks ago. Another great time just relaxing and enjoying their company. And like last time we took the wheelchair with us and I have to stress again that to anyone reading this it was GREAT, to be able to feel that you belong and to know that the wheelchair was giving me an option on life. Get out and enjoy what you have while you are able.......

Filling in time....

2006-08-25T22:14:00.000+12:00

Now that I have more time on my hands since being retired what do I do with my time. I used to be very heavy into "Genealogy" (family tree's) and would spent many long hours on the computer looking at different web sites dealing with that subject. Standing joke with me and Jan would be and this was after the evening meal.."Just going to check my email dear"...well, that was me for the rest of the night.
Now, I'm not so much into it any more. More interested in finding people like myself with MND who have web sites and belonging to sites for those with MND/ALS.
But, back to what do I do...I now carry, when I remember, my camera with me and try to take interesting photo's....The fun part is trying to stand and take a photo when both hands are occupied with the camera, the balance disappears completely...Anyway, here are a few that I have taken just recently. The bird on the left is a New Zealand native, a "Pukeko". I will check up on my spelling later. The other bird is a also a native to New Zealand, a wood pigeon . So, as Jan and I go for walks or go out in the car we look out for those moments when we can get a good photo.

You need Family...

2006-08-17T13:42:00.000+12:00

Top Photos..(taken with our Grandchildren) left - right.. Isaiah . Shianne and Danielle with Jan. And with me..taken at the dinner

When someone is in the position that we find ourselves in with a terminal illness family become very important. What would we do without them. You give so much of yourself to the one's you love and to have the same in return when you need it is much appreciated. In March of this year I had a birthday, my 64th, and Jan, John and Tania jacked up a surprise for me months ahead of the actual date. John and family came down to Silverstream from New Plymouth and arrived on the night of my birthday. WOW...I was delighted to say the least. I was, truth been known probably feeling a wee bit down so what a wonderful pick-me-up.

They were here for 3/4 wonderful days and on the night after they arrived we went out to a very nice dinner at a "Carvery" just a few minutes away by car. A great night enjoyed by all.

Today is Thursday 17Th August and over the last two - three weeks I have noticed an increased amount of cramping in the fingers of my right hand. The left hand is not so bad, at this point in time. And with the cramping I am starting to find it difficult to not only hold the computer mouse but also to type. Same with eating, put too much pressure on the knife and I have to let go and straighten the fingers....

Morning tea..

2006-08-08T11:01:00.000+12:00

DSCF1755
Originally uploaded by coutts_robert.

Morning tea with some of our MND group in Lower Hutt. Its a great place to meet up with new patients and hear the latest on what is happening in New Zealand on Motor Neurone Disease. That's me second from the right. Of course everything else gets talked about as well, like who is going on holiday, the weather, new recipes, look at photos etc. It really is a neat hour & a half (or longer)

Also everyone needs a friend when they go to Hospital, even us adults. Ted was given to me by my wife,Jan. To keep me company in the long hours of the days and nights when I was admitted way back in Dec last year. Do you have a friend...?

If you know of anyone who has MND or is interested they are more than welcome to join us for morning tea held on the first Thursday of every month at the Arthritis Rooms in Lower Hutt at 10.30am.

My friend.....

2006-08-02T19:23:00.000+12:00

Today I went to see my friend, Moira-Anne for our Wednesday afternoon tea. She was very excited as the builders were there putting in a much awaited ramp for her. Still just a bit more to do, but, I had to be the first person to use it. No no I was telling her. It should be you but Moira-Anne being the person she is insisted that it would be me, so.... taking my camera she managed to take a photo of yours truly walking up her ramp. The next big test will be using her electric wheelchair down it for the first time. All so exciting....
Here is a link to her blog http://thehappyhutter.blogspot.com

Thank You...

2006-07-31T21:58:00.000+12:00

Seven long months have gone past (dx on 15/12/05) and I would like to say a special thanks to my wife, Jan. It hasn't been easy on her, keeping an eye on me and trying to run a business as well. We both have our moments but as long as we can be positive and strong in our dealings with this crippling disease we will be alright.
Photo taken at home 30/7/06
She has been and is the light in my life, my support and will always be there for me . Today was another step in my fight with MND. We sold our house so sometime in the very near future there will be NO more inside stairs for me to climb. I will admit that in the last few weeks they have become just slightly harder to get up but as long as I can keep pulling myself up with the help of a very good hand-rail I will be alright.
Now we have to find ( and many of you have had to do this ) a house on the flat, and we may sell the business so when and if that happens Jan will be able to spend more time with me. Also a long overdue holiday is on the cards. Lets see, Australia, Europe. No, I think we will take the time to see some more of our own beautiful country.......

2006-07-30T12:42:00.000+12:00

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Relaxing at home..

2006-07-29T21:28:00.000+12:00

At home relaxing with three of our four cats. On my lap is Leo, lying on top of him is Rogue (hand-reared) and by her self is Jess, our old lady. The things we do for our pets, IE, Jess is lying on an electric blanket as the night's have been cold and she likes the heat.
Mind you, I'm not complaining sitting on it as well.

AGM WELLINGTON BRANCH

2006-07-29T20:44:00.000+12:00

On Saturday 22 July at the 'Arthritis Rooms' in Petone the Wellington Branch Annual General Meeting was held. There was a very good turn-out of Committee members, those with MND and family members.
The guest speaker was Dr. Zainab Contractor from the Hutt Hospital who made a presentation on MND then there was a question and answer time. This was followed by soup and a light lunch about 12.30pm enjoyed by all.
Three of our committee.....
left - right. Helen Milloy, our wonderful fieldworker / Gerald Boot - Executive Officer & Wendy Smith, President. The meeting finished just after 1pm.

What is MND...

2006-07-29T16:36:00.000+12:00

Motor Neurone Disease (MND) is an all embracing term used to cover a number of illnesses of the motor neurone. Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), Primary Lateral Sclerosis (PLS) are all subtypes. MND is the generic term used more in Europe whilst ALS is sometimes used more generically in the USA.
These diseases are also known as Maladie de Charcot, and are often referred to in America as Lou Gehrig’s Disease, after the famous baseball player who died of the disease.
ALS/MND is characterised by progressive degeneration of the motor cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe and swallow. With no nerves to activate them, muscles gradually weaken and waste. Its symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing and breathing. In most cases it does not affect intellect, memory or the senses.
Progress is relentless and generally rapid, with a life expectancy of between two and five years from the onset of symptoms.
Though it can affect anyone, ALS/MND is more often found in the 40 to 70 year age group. Once thought rare, it is in fact quite common.> There are nearly 120,000 cases diagnosed worldwide each year. That is 328 new cases every day! The impact on the community of ALS/MND is usually measured by the incidence and prevalence of the disease. Incidence is the number of new cases added in a defined period, usually a year. Prevalence is the number of cases existing at any point in time.
The incidence of ALS/MND is 2 per 100,000 of total population, while prevalence is six per 100,000 of total population. Research has found that the incidence is higher in people aged over 50 years. Only 10% of cases are familial (inherited) with the remaining 90% sporadic.
The disease affects each individual differently and can have a devastating impact on family, carers and friends.The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability which, in turn, require increased levels of support
( I pasted this from another web site)

Web sites for MND

2006-07-17T22:51:00.000+12:00

Two very good web sites for those people with MND or their carers . One in London and the other in America.

www.build-uk.net & www.patientslikeme.com

I have joined both. At this moment in time I am still able to walk but finding it more and more difficult. Jan is taking me out a bit more in the chair and it is good for the both of us. I have also in the last few weeks noticed a movement in the right side of my face from my nose across to my ear. Only happens at odd times. There is also more twitching in my good leg (right) as well as the left.

Holiday in New Plymouth

2006-07-10T20:40:00.000+12:00

In Easter of this year Jan and I decided we would go to New Plymouth to spend some time with our son John and his partner Tania and her three children. With my walking being what it was we also decided that just maybe we should look at hiring a wheelchair for the duration of the time that we would be there.
It was a very good move on our part. We arrived at our sons place late afternoon and made a fuss of by the family. Next morning after having breakfast we all piled outside with John in charge of the chair. I walked as far as I could down to the end of the street (not far) and then got into the chair.
I can only describe the whole time that we were out that day as wonderful. I had a ball being pushed around by John, Tania and of course Jan. New Plymouth has a fantastic walkway along the foreshore and it seems to go for miles. A lot of people, in wheelchairs (both manual and electric), bikes and other forms of mobility plus those who just walk or run use this wonderful asset to New Plymouth.
For anyone with a disability using a wheelchair is the last resort. But it shouldn't be. Having a chair for myself has opened up a whole new world to me. It means that I can be independent. I can go shopping, go to the Movies or even hop on to a bus or train.
To anyone reading this who is unable to walk for whatever reason let me say that to use a wheelchair is not giving up on life. Quite the reverse...I can still walk at this stage, slowly and with a stick and I must say its hard work at times, but, the chair has made life so much easier, not only for me but for those around me as it means I can join in with whatever is going on. GET OUT AND ENJOY THE TIME YOU HAVE....

From the walkway we went into the town proper and at one time I had a passenger sitting in my lap, Isaiah, the youngest of Tania's children. He thought it was pretty cool being able to have a ride. A great day had by all. Sunshine, fresh air, ice cream's and the enjoyment on my part of being pushed around by those who love me. Really nice.... The wheelchair was well used in the time that we spent in New Plymouth.

In the photo on the left is Tania's oldest girl, Shianne who also had a great time in her powered wheel-chair. Shianne, 8 years of age is a bright young girl full of life despite also having a disability.
She is the sort of person that makes you want to do better yourself. You know...if she can do that or this then so can I.

MND Lunch update

2006-06-28T12:32:00.000+12:00

In the first photo we have my wife Jan, Wendy, Dave & his wife Merle, Helen & Anne Marie.
In the second photo we have myself, Wendy & Jan.
In the third photo we have Dave (behind the bush) & Merle, Helen & Anne Marie and Jan, Wendy obscured.
I think another lunch will be on the cards shortly and hopefully more members will be able to make it.
(Sorry about the quality of the first photo, my balance is not the best and trying to take a photo at the same time was fun....) click on each photo for an enlargement.

Feedback on the lunch..It was a fairly nice day and the MND members met inside. We didn't get the turnout that we were expecting but it was still a neat group of people. The menu was poured over and we all had something different. Food was excellent as was the wine for those who had it.
It was a very relaxing time and enjoyed by all. Plenty of car parking outside. (And wheelchair friendly)

MND Events

2006-06-24T13:05:00.000+12:00

With the Wellington branch of the MND Assc. there is a monthly morning tea which is held at the "Arthritis Rooms" in Petone. It is a chance for everyone diagnosed with MND and their carers to get together, exchange stories, hear how other people are coping and at the same time have a drink and a bite to eat.
I find it very rewarding and have made friends with one woman whom I shall call M-A. With laughter on both sides she is described as "the other woman" The thing with MND is that you can get very lonely and it is better to be happy (as much as you can ) in the circumstances, than be in a posistion where you know no one. Life ( for those with MND or any disibility for that matter) ) is far to short for that . It is important to have a good team of people you can call on, not only for medical assistance but for the friendship and companionship that those with MND need.
Tomorrow we are going to meet at the "Bellevue Gardens" to have lunch with the MNDANZ and hopefully there will be a good crowd. I will let you know how it goes.

Te Omanga Hospice

2006-06-24T11:58:00.000+12:00

Yesterday Jan and I paid a visit to the Te Amanga Hospice in Lower Hutt. This is where I will go for respite care . We were taken right through the building and were very impressed with what we saw.

Perching Stool

2006-06-24T11:14:00.000+12:00

Another great item is the Perching Stool pictured here. To give an idea of size, from the floor to top of seat is 630mm. Height can be ajusted on all four legs and you can have it so that the seat is sloping down and your feet are just touching the floor. Its then a simple matter of standing up without any effort . Really great. I was using it in our shop when I was pressing out beef patties ( Jan and I own a Gourmet Burger Shop ) as with my balance I couldn't stand unaided at the time.

My first fall

2006-06-21T23:24:00.000+12:00

Today was another step down in the MND stakes. I had my first fall, in a computer shop of all places. It was early afternoon, tripped over my own feet and went down, almost felt like slow motion, just grazed the top of my head on a corner of a metal shelf. Could have been a lot worse. On a brighter note have bought a Web Cam so can now talk to people like myself all over the world.

An also must have for anyone with MND is a trolley like this, no more spilling the 'cups' of coffee etc. Legs can be adjusted for height. A wonderful addition.

Have noticed that my legs are both jumping a lot more with increased movement in the right leg (my left leg is where it all started) . More so at night time when lying in bed. At this stage of the disease I am still not on any medication altho I was taking Omega 3 (fish oil) for a while. The one thankfull thing about all of this is that I am in no pain......

2006-06-20T17:35:00.000+12:00

June 20th 2006

Motor Neurone Disease

2006-06-20T00:25:00.000+12:00

My name is Robert Andrew Coutts of Silverstream, Upper Hutt in New Zealand.

I was diagnosed with Motor Neurone Disease (MND) on 15th December 2005. I am 64 years of age, married to a wonderful woman called Jan and we have two son's, John 25 and Phil 23. Six months have gone by and my status at this moment in time is that my walking ability is not the best. As you can see in the photo I have a very good walking stick but I have also been issued with a wheelchair which is really great. It means that Jan and I can now get out and enjoy the walks that were so much a part of our life.

In the Hutt Valley where I live we have a great support team. The main office for the New Zealand MND branch is in Wellington.. http://www.mndanz.org.nz

I have been asked many times by friends and family if I am angry or bitter about what has happened to me and I have to answer, No!. Why that answer..Why not, I can't undo the diagnosis. I have to make a stand and get on with life as best I can. At the time it was a shock and as Jan tells people, "We don't have to accept what Robert has, but, we can live with it". And that is what we are doing, taking each day as it comes and being very positive.

There are many changes that we have to make, like anyone with this disease, none the least is that we will have to sell our house as it has stairs (two story townhouse) and look for one on the flat. You don't realize just how many changes have to be made until you go to climb out of the bath, try to make a simple cup of tea and carry it to the table, wash the dishes, the list goes on.

Here is a link to the Scottish MND web site http://www.scotmnd.org.uk/

June 21st 2006 is Global Awareness Day for all those people affected by MND