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.

New Generations

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....

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