Susan Harding

I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother had been previously diagnosed in 1974. Another brother was never diagnosed but certainly had it.

In my late 30’s when I was having more trouble with balance and fatigue I went to the same clinic where my mom had been diagnosed and it was confirmed that I also had it. There was nothing to be done.

At the time, my two children were just beginning school and I was teaching fitness classes. Unpredictable fatigue prevented me from returning to work full time.

Unbeknownst to me, my second cousin was diagnosed at the same time. Her father and grandfather (my mom’s brother) both had Ataxia. My cousin and I have been in touch regularly since 2011.

In Feb. of 1999 I began horseback riding, specifically centered riding. I had ridden when I was young and my daughter had recently begun to ride. Being close to the activity gave me the incentive I needed to start again. In a couple of years my gait instability and balance had improved greatly! This was due primarily to increased core strength and proprioception.

In May 2003 I retired from instructing after 15 years. I stopped riding in 2005. The riding was great but all the rest (getting the horse from the pasture, grooming, tacking, etc) was too taxing.

At this time, as my physiotherapist sister-in-law had suggested, I enrolled as a member of Taoist Tai Chi. The original tai chi set had been reworked to focus on health. I continued until March of 2020 (covid) attending two or three times a week and working as a volunteer in the office. It is very good for balance. I especially found the weight transfer aspect very helpful.

I met Prentis at tai chi. He suffers from Friedrich’s Ataxia. Together we began a local support group in 2014. We had a number of in person meetings. Each usually had an educational component and, most importantly, food. There have been a few social gatherings too. We began regular virtual meetings in 2020.

I took up aquafit a number of years ago and love it but I certainly missed it during the covid pandemic . It works on my core and I can do many exercises I wouldn’t consider doing out of the water. I have tried to replace this with other core exercises. With more time at home I was enjoying yoga and a few other online videos and classes regularly. I continued with aquafit in the summer when it resumed in 2022. It is still ongoing.

My husband is very active and a great motivator for me. He has always been very supportive. I am sure that if he was a “couch potato,” I would also very easily slide into that state (only the results would be much worse). Although we do our own physical activities we still manage to do some together (snowshoeing, walking, biking/triking).

In 2014 I was enrolled in a program at the genetics clinic at the Children’s Hospital of Eastern Ontario through Care4Rare, “a Canadian consortium improving diagnosis and treatment of rare diseases”. There had, so far, been no conclusive genetic testing to confirm what SCA I had. By comparing my blood samples with that of my cousin it was able to be determined (fall 2016) that we had SCA42 which had only been identified in 2015. My son was subsequently diagnosed in 2018 at the age of 32.

Since the start of our support group I have been more involved in educating myself and others about Ataxia and other rare diseases. Becoming a member of the National Ataxia Foundation has certainly made this easy. I love attending webinars and always know where I can find good, reliable information. NAF is a fabulous supporter of support group leaders! Ataxia Support Group Ottawa (ASGO) became Ataxia Support Group Ontario in 2022. There is a lack of support groups across the country so ASGO became Ataxia Support Group Canada in 2023.

Having a disability has made me more aware of others and their seen and unseen struggles. I am more tolerant. This was also helped through the meditative, calming practice of Taoist tai chi.

I have adapted well to this life with Ataxia. When an obstacle has been thrown at me I just change course, not stop and give up. I am still able to walk. I now use a rollator.

Some time ago I heard an interview on the radio about mental health. What I took away from it and would like to pass on to you is: Every day make time for the 4 S’s. Shower, Stretch, Sunshine and Specific. Specific can mean some task you would like to perform i.e. clean your closet, bake cookies, or just connect with an old friend. Set yourself goals every day. It will feel good to meet them. I went for a walk this morning, did some gardening, had a nap (Listen to your body!) I have already done yoga. I attend an online exercise class 2X per week, go to aquafit outdoors and attend a number of online support groups. Those social connections are so-o-o important!

Make yourself a priority! (Be somewhat selfish.) Put your own physical and mental health above all if possible.