When I was a teenager I remember my father used to weave a little when he walked. We played a lot of golf, and he often toppled over when he tried to tee up his ball. 'Damn middle ear!' he said, and we all nodded in agreement.
Back then nobody knew what caused balance problems other than middle ear issues or too much alcohol. By the time I was on my own my dad was using a walker, and then years later a wheelchair. I thought this was a natural progression of his 'middle ear' problem.
Around the time I turned fifty, I began to notice a slight imbalance myself. Riding a bike, jogging, playing golf, and ice-skating were all becoming more difficult. I put it down to age but when it steadily progressed I was concerned. My doctor referred me to a neurologist and that is when I got thediagnosis which changed my life. I had 'Ante Cerebellar Degeneration'. It meant the part of my brain stem which monitored my balance was degenerating. As it turns out there is no cure and it is fatal. I couldn't believe what I was hearing, and the doctor gave me the news like he was telling me I had the flu!
I started to do my own research and found out that the disease is also called 'Ataxia'. That sounded sexier and not as much of a mouthful. I had a lot to learn about this disease. One in 50,000 people get it.Lucky me! From that neurologist I was referred to one of the top men in
the field to find out more about my strain of the disease. It turns out there are many strains, of which some are more deadly than others. There are thirty-four main strains but only nine can be tested for here in Canada. If yours is not one of the nine then your blood has to be sent to
Germany where they test for the other twenty-five.
To make a long story short, mine was not one of the nine. A year after my blood was sent to Germany, I found out it was not one of the other twenty-five either. The neurologist told me mine must be a 'mutant strain'. That was the worst thing he could have said in front of my wife. She called me a mutant for six months!
The one good thing that came out of this test was that I did not have one of the more aggressive strains. Some people are in wheelchairs in their teens and dead in their twenties. As the years go by and I become more affected, I hold onto that last thought.
My mobility worsened each year. By the time I was sixty I could no longer play golf. Jogging was out of the question without falling every ten yards. I tried to skate one winter and it felt like I had never skated in my life. I had long since retired from my sales career and taken
a part-time job three days a week at a car auction. I was now starting to fall a lot. I was fortunate to come away with scraped knees and hands and one broken bone in nine years before I quit. I could not face another winter sliding around on the ice with my problem. I left the job just in time because the disease progressed more as Iapproached seventy. I had become my father.
I purchased a 'quad cane' on the advice of friends but it didn't work. A cane is great for taking the weight of an injured limb but not to keep you upright. Then six weeks
after my seventy-first birthday I had my first serious fall. I broke my right arm in six places up near my shoulder. We had a horrible winter. My wife had to do everything I would do with my right hand and when we had to go out I was petrified I would fall again. After the fractures healed and I was taking physiotherapy for my shoulder, Covid-19 came along. Now I was terrified I would fall, break something else, and have to go to a hospital. No way! It seemed the safe and logical thing to do was to start using a walker.
I had always been fit and even when ataxia started to rear its ugly head I still used to walk around the block. Now I feel like a little old man. People I have known for years who are used to seeing me walking are uncomfortable. They don’t know what to say. 'Knee replacement?' 'New hip?' Of course when I tell them about my Ataxia they stare blankly. Not a single person had heard of it.
The mental anguish I have been through since I took up with myfriend the walker is worse than the physical anguish of breaking my arm. I feel ashamed and feeble. Ataxia is not easily explained. A knee or a hip injury is common and temporary. This disease is a mystery to everyone except my wife and me. After pushing the walker for half an hour I lock the wheels and sit at the end of the driveway and watch the world walk by. At least once a week I hide behind my sunglasses and weep for what I have become. Each day I tell myself it could be worse. I now spend my days with my camera or working on the book I started six years ago. Pushing the walker does not give me the exercise I need. I have a treadmill and a spin bike in my basement but the thirteen steps down there terrifiy me.
I can't remember how old my father was when he was in a wheelchair. I am not looking forward to that. I know my future is not bright but I accept it. I have no other choice. It is what it is.
Recently I was pushing my walker along the street when I started talking to a neighbour. I started to complain about the boredom of the walker and how much I missed being able to ride an actual bike. He asked me if I had considered a “recumbent trike.” “What’s that?” I
asked. I went straight home (slowly) and googled it. That’s when I found out the largest supplier in Canada was ten minutes from my home. I had one in an hour and it has literally changed my life. If the sun is shining I am riding. It has seven speeds so I can go up any hill and disc breaks for the descents. For two or three hours a day I have my life
back.
David is now retired and has taken up some new pursuits, writing included. This is the second piece we have received at memoirist and we're really enjoying his style.
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