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The Caldwell Strain
by Andy Ingram
Most stories start at the start, but as I have no idea when or where that was Ill start with what I know.
I was born in Paisley, Scotland in 1948 and remember going to visit my Grannie Caldwell after church on Sundays with my other siblings in the fifties. My Grandpa Caldwell was ill and bedridden with what was diagnosed as MS in those days. Someone had told me that he was bedridden because of wounds he had received during the war, and for a long time I took this as fact.
Our family migrated to Australia in 1959 and we never heard of Ataxia until 1997 when my mum was initially diagnosed with MS, and then subsequently changed to a diagnosis of Spinocerebellar Ataxia a few months later.
Immediately we hit the Internet, or I should say my younger sister Rosie did. ( Shes the family historian and researcher)
The fact that it was hereditary never really made much of an impact on us. There are five of us, 3 boys and 2 girls. Our thoughts I guess were more with Mum and what she was going through. Mum passed away in 2000 with complications from a weak heart. Shed been told after the birth of her first child, not to have any more, but being Catholic and this being well before
the Pill, she had four more. We other four are eternally grateful to her for deciding to disobey the doctors.
Just after Mum passed away I started to show Ataxia symptoms (age 52), though I probably had started earlier. Since the age of 15 I played drums in bands. I had a break from it in the late 80s and got back into it in the late 90s. I was still ok but could never regain the standard I previously had. I just put it down to having such a long break from it, but I now realise that the errant ataxia gene was already loose. Drumming requires a certain amount of coordination. I also had difficulty in singing like I used to, as my voice would break after a short while. I now realise that this was more than likely the muscles associated with voice box being affected by the ataxia. The last time I tried to sing was a couple of years ago and I was so disgusted with the result that I havent tried since.
My younger brother John was diagnosed at 53 but had suspicions of actual onset 8 months earlier. My cousin Jackie is the unusual one amongst us in that his onset age was earlier than the rest of us at around 45. His Mums (My Mums sister) onset was around 60.
My first symptom was chronic fatigue followed closely by balance problems. The chronic fatigue could have nothing to do with the ataxia as the rest of my family got fatigue with the ataxia, but not on a chronic level like I did. Its just that it happened
around the same time as my ataxia onset that my GP and I tend to lump it in with it.
Because of the fatigue and increasing balance problems I slowly wound down my hours at work until eventually I finished completely in 2005. Thankfully my employer was very understanding during this period.
With this illness there have been a lot of losses and changes in my life. I was fairly active before, and the loss of my mobility has at times been frustrating. Frustration! Now thats a situation that comes along often. Strangely though, the loss of the major things like drumming, cycling, driving and eventually walking have not bothered me as I thought they would. I used to think I would die if I could no longer play the drums. Now though its the little things that I find frustrating, like using a hammer, screwdriver or any hand tools, doing up buttons (I try to avoid clothes with buttons), or attempting to butter a slice of bread only to have butter all over my hands and the slice of bread in pieces (usually on the floor). I believe I have uttered more four letter words more so in the last two years than I had in my whole life previously.
Thankfully those moments of madness are short lived and that on a whole I live by my motto Accept and Adapt. I have never worried about things that I have had absolutely no control over so Im not going to start now. Yes, life is different now, but I accept that and find new ways to do things. Take my music for example. I can no longer play but I can still listen and I have found
that I can listen and enjoy differently, no longer with the ear of a drummer/Claytons musician.
I give thanks to the modern wonders of the computer and the internet. I can be found most days organising my music on the computer and occasionally playing turn- based strategy games.
As my speech and hearing deteriorate I rely on Email etc. to keep in touch with family and friends. I have been using a Big Keys keyboard with a Perspex key guard for a few years now. It prevents you from hitting more than one key at a time. I have found this to be a great investment and highly recommend it to anyone with fine motor skills handicaps.
Other tricks that make things a little easier are using a Stable Table with my walker to carry food and drinks etc around.
I drink mostly out of travel mugs. My daughter found the best one so far at K-Mart. It has a nice wide bottom that is virtually impossible to tip over (well at least I havent done so yet). I always take one with me when I go visiting friends to avoid the inevitable embarrassment of spillages.
On a whole I am handling the physical side of the disability reasonably well but I have to admit to not looking forward to the time when I have to rely on someone else for all my basic needs.
When we as a family first encountered Ataxia and that we had a 50/50 chance of getting it, my other siblings and I said half jokingly, half serious, that if we got it we would start collecting sleeping pills. I cant imagine anyone who has led a life
uninhibited by a serious disability and suddenly finds themselves in that position not to think even if just for a moment, the possibility of ending their life. Thankfully for me it was but a passing phase. As the disease has progressed I have found life to be full of new challenges that are just begging to be overcome, and one must remember that there are always those much worse than us. I have a very close friend who has MS which though she is not as physically disabled as I am, her memory and decision making processes are severely affected. Only my cerebellum is affected where as her whole brain is attacked by the MS.
I recently discovered that the Ipad can be used as a communication device for the disabled with speech and fine motor skill disabilities. So with all the advances in modern technology these days we should be able to keep out of the nursing home just that little bit longer. All I need is some dev ice to help me wipe my bum.
We all handle things differently. Even within my own family those of us affected with the Calwell Strain handle it differently. We all put up a strong front, but whether this is true or not, you will have to ask them.
So far, it hasnt got the better of me.
© Spinocerebellar Ataxia Australia Inc