The way we live...

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....

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

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

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

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

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

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....

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...

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.