This is the first of what I hope will become a regular column for me in the Ataxia UK blog. I am a 49-year-old writer who lives with Friedreich’s Ataxia. I feel that my forties have been largely wasted, as I have had to spend much of this precious time battling local authorities to maintain independent living for disabled people, including myself.
You can read all about my work on disabled people’s rights on my website at: nathanleedavies.com
It is now time to focus more on myself and squeeze every last fragment of joy out of my life while I still can. I owe this to all my Ataxia brothers and sisters who were not as fortunate as I have been in reaching almost half a century of life.
Amid the political chaos that has been directed at both myself and the disabled community as a whole, I have somehow managed to develop an exciting pastime that I would wholeheartedly recommend to all Ataxians. In March 2024, I decided to buy an adapted exercise bike that I use from the comfort of my own home.
I first came across this excellent piece of equipment while visiting the Neuro Therapy Centre in Saltney, Cheshire. I am based in North Wales, and travelling to Saltney every week was costing me a fortune in petrol. On top of that, I was only able to use the equipment for one hour each week. Now that I have my own machine, I can exercise daily, which is great for both my physical health and mental wellbeing.
I have also discovered websites that offer virtual challenges, helping to make exercise more enjoyable and increasing motivation. They certainly work. I have already completed a virtual journey from John O’Groats to Land’s End, cycled the equivalent distance of the London Marathon back in April, and I am currently close to completing my journey along Route 66. This challenge covers 2,278 miles and, at the time of writing, I have fewer than 800 miles left to go.
I use the hand pedals on my exercise bike to complete these challenges, as I can no longer position my feet securely in the foot pedals.
I am very determined to reach the finish line because the people who run these websites provide incentives for those with enough dedication to complete the challenges. These rewards come in the form of a T-shirt and medal in return for a small fee. Another nice touch is that participants receive electronic postcards along their journey. These are genuinely satisfying to receive and help keep motivation high.
I have just received my 15th postcard on Route 66 and am currently in Bluewater, New Mexico. It really is a fantastic service, and I am already planning my next virtual challenge as I continue my journey around the world from the comfort of my living room.
If you need any further persuasion that this is a worthwhile venture, the website I use also plants a tree on your behalf when you reach 20%, 40%, 60%, 80%, and 100% completion of selected challenges.
I will keep you updated on my virtual challenges, as well as any other projects or events that I choose to pursue in the months and years ahead. I do this to honour my fellow Ataxians and to encourage you all to test your limits, embrace new experiences, and enjoy life to the fullest.
