Check out the inspiring story of Susan Harding. Snowshoeing, walking, biking/triking. She is a very active lady!
My name is Susan Harding. I have 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) were both Ataxians. 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 this year (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 Clairmont at tai chi. He suffers from Friedreich’s ataxia. Together we began a local support group. We have had a number of in-person meetings. Each has usually had an educational component and, most importantly, food. There have been a few social gatherings too. We have recently begun regular virtual meetings.
I took up aquafit a number of years ago and love it but I am certainly missing it these days with lockdowns. 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 have been enjoying yoga and a few other online videos and classes regularly.
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 2017) 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. I often listen to the motivating podcast “Two Disabled Dudes”. The ‘dudes’ both have Freidrich’s ataxia. Their motto “life is about how you react” is certainly a good one to live by.
Having a disability has made me more aware of others and their seen and unseen struggles. I am more tolerant. This has also been 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 use a cane, pole, or poles when away from home.
I am looking forward to my first grandchild in May and although I won’t be able to fully participate in activities with her I will be right there along with my husband who can. It will be much like my mom and dad with our own children.
I recently 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. My goal today is to finally submit this. I have already done yoga. I will go for a walk after lunch to get some fresh air and work on my core and later this afternoon I will Zoom with friends on the HFA global support group. Those social connections are so-o-o important!
Make yourself a priority! (Be somewhat selfish.) Put your physical and mental health above all if possible.
Thanks, Susan Harding for sharing your story!
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