Bipap... pro's and con's

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......

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

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....

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

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

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 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....

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

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"

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..

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.....

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..

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

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

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

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...

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...

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

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

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

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.....

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

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

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...

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....

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

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.