Lockdown life with ataxia: part one – Ataxia

Lockdown life with ataxia: part one

Lockdown life with ataxia: part one

As we end our 6th week of lockdown, how has my world changed and how am I adapting to it? At a time when we are all being forced to reassess who we are and how we interact with the world around us, what does this show us about barriers to equality?

Life isn’t too bad… Yet

I’m a positive-kinda guy. When asked how my family and I are coping, I reply “OK really, the food deliveries are regular, we all get on, the weather is nice.” I’ve rediscovered the joys of reading and music. I’ve kept up with my blog so far. But my optimism is very precarious. I feel I should end every positive statement with the word YET. What I do not say is that we are so close to disaster. As the people I love haven’t been affected, it isn’t real to me (YET).

Volunteering is a big part of my life and is on hold for the moment. Although I know that will come back easily enough, I am secretly bracing myself for worse times. OurBus Bartons, the Community Transport I set up in 2016 and help run, suspended operations on 20 March. So far, people are coping without us, but that can change overnight. As our services are vital to many of our passengers, I thought our vehicles and volunteers would return as delivery drivers for shopping and medicine long before now.

Charities are facing a major crisis

As with other charities, Ataxia UK faces tough times. I had booked an abseil from London’s ArcelorMittal Orbit in July, much to my wife’s relief, that probably won’t be going ahead. Mine was a small event, but when you think of all the other events, large and small, that won’t go ahead this summer, it becomes a real problem for many charities. My Co-Chair at Ataxia UK and I have had several meetings to support our charity to adapt and survive. Our brilliant staff at Ataxia UK have hosted online meetings to discuss TV shows, books and films, a well-attended quiz, and Q+A sessions with new patron James Moore and with a world expert in ataxia.

The 2.6 challenge was an excellent way for everyone at home to help. My friend and fellow Trustee, Andy Downie, travelled up and down his staircase 26 times. He has just turned 70! Inspired by his effort, I completed 26 lengths of my garden path in 26 minutes. My path is only 8 metres long, but the 2% slope, the uneven paving slabs (I have hard tyres!) and the time limit made it quite a challenge!

The important moments

At the end of March, I brought a professional membership on Zoom, the video chat platform. This means I can host events for longer, rather than the 40 minutes you’re allowed on the free version. I opened a virtual pub, The Olde Sea Dogge, for my friends and I to catch up every Friday. A very touching moment was when a friend’s wife came home from a nightshift at a supermarket. She popped in to say goodnight and was roundly applauded by everyone in the pub. Our daughter started online Guides on Zoom and we all enjoyed a family quiz this week.

Our home lives still revolve around our brilliant kids; Billy 5 and Bella 10. Home schooling has been fun. My wife, Helen, is a teacher and just started a new job. Fortunately, she is able to work from home at the moment. We miss friends and family, but we have each other and are still enjoying the novelty of the situation. Just before the lockdown began, we restored our garden trampoline which our dog had mostly eaten, and our kids spend lots of time on that as the weather improves. They go out for bike rides most afternoons to keep active. Occasionally I join them. I took an instant and irrational dislike to Joe Wicks, the body coach who does PE classes on YouTube. Things have been fairly quiet here. The most danger I have been in was when my wife used the dog clippers on my hair and hoovered me afterwards!

Staying fit

I have been inside a lot, so I’ve lost some of the activity I was doing. When I retired, I bought a Thera Trainer through instalments. It’s an exercise bike with a motor connected to the pedals and hand cranks to assist you. I had tried one before at a rehabilitation centre in Birmingham and was so impressed, I knew I had to get one! I strap myself in and use it for an hour every day, I am sure it improves my digestion, cardio, muscle mass and circulation. It is in front of the TV, so I use it whilst watching Netflix with my wife when the kids are in bed. I have increased the length of my workouts to compensate for not going out.

Stay tuned for part two of life in lockdown!

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