Ken

My Ataxia journey started some years ago. Even before I was diagnosed, my wife commented that I walked like “Tipsy Mc Staggers”, and I had balance issues that I attributed to a ‘wonky’ knee. I spent about 50 years working in the education field as a teacher, assistant principal, math consultant, university lecturer, author, and more. The diagnosis was one of the factors that prompted me to transition from part-time work to full retirement.

In 2018 suddenly my speech became jumbled. I described it as talking “with a mouth full of marbles”. My local doctor referred me to a memory clinic. After a battery of tests, I was sent to a neurologist, a speech pathologist, a neuropsychologist, and an occupational therapist.

Since that time, I have stopped work and stopped driving. I use Uber to get around and I am lucky to have my wife who often acts as my driver. We have reached agreement that if it is not viable for her to drive then I call an Uber. I have not let the Ataxia take over my life.

Sometimes the symptoms of my Ataxia are worse mainly due to tiredness. I confound the medicos as they can’t pinpoint the type of my Ataxia because my initial visit to the neurologist raised concern for some Parkinson-like symptoms. I have been to a Balance Clinic, been to two more speech therapists, and undergone genetic testing and nerve testing. Luckily, I have ended up at the NAF Center of Excellence with Dr David Szmulewicz at the Royal Victorian Eye and Ear Hospital in Melbourne, Australia. In the past year I have had three or four falls which are connected to my Ataxia/balance.

I find the following situations especially difficult: uneven ground, sloping ground, and going up and down any flight of stairs that do not have a support rail, and sometimes getting on a train or tram. I think it is due to not concentrating on lifting my feet. Currently I am undertaking a “30 Day Better Balance for Ataxia Challenge” offered by Elizabeth Floss as part of her “Little Steps, Big Gains” program. The program was mentioned in a NAF newsletter.

I still play golf (although in a drive cart) 2 or 3 times a week, go to the gym for cardio or a light weights/ exercise program three times a week and am lucky to lead a normal life otherwise. To keep my mind active, I do the 9-letter word puzzle in the daily paper and play sudoku on my phone. I believe I’m still functioning mentally but there is sometimes a slowdown in decision making. I fill my time reading, using the computer and walking/playing with our dog.
My primary support is my wife Rae for which I am very thankful. I receive other support from my sons, their wives, my grandchildren, and friends.

The things I find most affected by my Ataxia are my ability to judge distance (essential when putting at golf), my speech not being clear to the listener, my balance, and I startle easily. I take the approach of sharing my Ataxia difficulties the first time I meet people. I have found everyone to be caring and understanding when they are in the know.

Don’t let an Ataxia diagnosis ruin your life – just change your life to suit!