Ed writes about his thoughts and journey after being diagnosed
It’s worrying. Finding out you have this genetic disease which does not have a cure and there’s very little known about it. Suddenly a lot of plans for the future (financial, relationships, careers) are thrown into the air. It’s been almost a year since my diagnosis, and I’m not sure if I have fully accepted it yet. Mostly, I think, but there’s a lot of uncertainty. Given I have been living with the symptoms that have (very slowly) crept up on me, it’s difficult to accept such a life-changing diagnosis.
I now work with my Dad running a small IT company (just us two), and we work from our respective homes 99% of the time. Fortunately, this gives me a lot of flexibility, working from home and with a family member, managing our own workload. I also have several friendship groups offering lots of support and understanding of the condition I have.
After my diagnosis, I quickly got involved with Ataxia UK. I have joined a local support group, attended their ‘All About Ataxia” sessions (for recently diagnosed patients to learn about the condition), and done some fundraising – see attached photos, the challenge was to walk to your GP’s surgery and post the Ataxia UK Medical Guidelines, to raise awareness and improve ataxia diagnosis and referrals – I had several friends and family members join too!
Unfortunately, one of my hobbies since I was a teenager, playing guitar, is too difficult nowadays. Though, I still have a couple of guitars on display in my flat – I love looking at them! Another hobby, kayaking, is also too difficult on my own – but, my Dad and I bought a tandem sit on top kayak last year, so we can go out together and I don’t get too tired (plus I do not have to worry about getting out of a sit-in kayak!)
In the UK, we’re lucky to have the National Health Service (NHS). There’s tons of health professionals covering many types of healthcare. Using my local GP, or the specialists at the Ataxia Centre, I can access the healthcare I need.
Like many ataxia patients, I have found it really useful talking to others in the ataxia community and learning how to cope with the condition.
to confirm their findings from my genetic testing.