Jo Jones committed to living a full life and that has not changed since her diagnosis of Ataxia. Read more to hear how she is adapting to all of the things that are most important to her.
I was 50 when I was diagnosed with an unknown SCA. It all happened very quickly – not the years of misdiagnoses that so many have lived through. It is slow in its progression and I try to take every advantage afforded me. In the last couple of years, I have become more comfortable with the things I can and can’t do. First and foremost, I know how lucky I have been in this journey. I lived (and continue to live) a very full life.
I was in my 30s and interviewing at a university in California. I had to walk from one building to another across campus and try as I might, I couldn’t walk in a straight line. I also noticed that I had trouble speaking sometimes – some phrases were just like a tongue twisters to me. I had a couple falls through the years, but I would always explain them away. Then in December of 2009, I had three unexplained falls in one weekend.
I called my General Practitioner right away and she saw me that week. She sent me to a neurologist, who tested me for everything she could think of. The MRI of my brain was the final piece of the puzzle and she talked to me about SCA, saying that I’ve most likely had this all my life, but had been compensating for it – until now when I just couldn’t anymore. I am the oldest of 4 children, so I called each of my siblings; turns out my youngest brother suffers also. We were always close and now we are even closer.
In my life before, I worked as an event planner and fundraiser, for a private university and then for a nonprofit agency that helped the homeless. I was a people pleaser and enjoyed being around many groups. I worked until I was 57, when it became clear that I just could not keep it up. I had just finished working on a big fundraising dinner and auction with over 300 attendees, 100 auction items, and a slew of volunteers; I was dead tired all the time. During my lunch break, I would close the door to my office and lie down on the floor to take a nap!
I am married to an extremely supportive man. My husband and I have always valued working out and eating a diet of whole foods. Fortunately, we are on the same page when it comes to these basics. I like to cook and try out new recipes. I can’t serve though; I can’t tell you how many times my serving has ended up on the floor. Although, our dogs are always nearby to clean up my mistakes.
Before COVID-19, I worked out with a personal trainer 3 times a week. In February I purchased a treadmill, who knew how incredible the timing was on that! I have learned that 3 years of working with a trainer gave me a lot to build on. I now work out 6-7 days per week. I challenge myself to walk on the treadmill every day and I also do work with weights and TRX to keep strong. Everyone says keep as active as you can; it can’t be stressed enough.
Also before the pandemic, we were doing a lot of traveling with our truck and travel trailer. What a great way to see the countryside and be outdoors! I have a rollator that I use when we travel. It gives me more independence and it makes it much easier for my husband. We can walk together with the dogs and he isn’t constantly worrying about me. I have a lot more patience with myself and I am learning to ask for help when I need it. I have always told myself that everyone has more to their story than what meets the eye and I try to remember that even more now.
I think we all can relate to how Ataxia can rob our energy like a thief. Constant adaptation to physical limitations can lead to lasting joy that cannot be stolen from us – thanks, Jo Jones.
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