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David Beavan

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 the diagnosis 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.

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. 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 others.

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 types they could test for 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 I approached 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 my friend 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 terrifies 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.

David Beavan

Addendum: In mid July I was telling someone how I missed riding my bike and they said “have you considered “recumbent trikes?” To make a long story short I am the crazy guy riding up and down the bottom stretch of Glenarth twice a day. For an hour a day I have my life back!

When Were You Diagnosed? Which Type (If Known)?

2004. Cerebellar Ataxia.

How Has Ataxia Impacted Your Life?

Gradually my balance has disappeared to the point I am full time with a walker.

What is One Thing You’d Like the People to Know About Ataxia?

Your life will change but if you have a positive attitude you will get through it. In addition there is lots of support available.

Share Your Advice – How Can Others Support Someone with Ataxia?

Treat them like equals but be prepared to jump in and help even if it is only doing things WITH THEM.

How Has NAF Helped You or Your Family?

It has kept me up to date on research and activities related to Ataxia.

What is Your Ataxia Story?

As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community. 

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