First things first: my name is Jason and I’m 46 years old. I’m married, have three children, three grandchildren, one cat and one dog. I live in a rural part of Hertfordshire and have been here less than a year. The most important fact though is that I’m adopted. Why is that an important fact? Well, because being adopted means ataxia came out of the blue.
I was diagnosed in 2015 with spinocerebellar ataxia type 2 (SCA2) and have taken up attempting to write as a means of dealing with it. What I haven’t talked about in any great detail is how I got here.
SCA2 is hereditary and therefore I had no idea it was coming for me. From as early as I can remember, I’ve been clumsy and a bit uncoordinated. I’d had a stab at trying to find out why and it was thought that it could be MS. After an MRI scan this was ruled out, and I thought that I was just naturally clumsy. This meant my chances of being a brain surgeon were not good.
At the time, I had a really great job that I enjoyed a lot, and I also volunteered as a Special Constable (I did everything a regular police officer did, except for free). I loved volunteering; I had some good (and some bad) experiences, but importantly, I made some strong and lifelong friendships. When I was on duty however, my driving was so bad it achieved legendary status, and it became something of a running joke that I was unable to walk in a straight line – I should have seen the warning signs then.
Around the middle of 2014, I had a fall at home. I managed to trip over in the back garden and break my hand. While we were in A&E, my wife explained to the doctor about how I had fallen, and expressed her concern that she didn’t think it was usual for someone to fall so much and be as clumsy as me. He agreed and advised me to see my GP, who carried out a few neurological examinations which proved something was amiss.
The lead up to my diagnosis
I was referred to a neurologist, who also agreed that something was wrong, he knew it wasn’t MS but he couldn’t put his finger on the cause. I had done a bit of research myself and I suggested ataxia. Although the neurologist was skeptical, he performed the necessary blood test and a few weeks later it was confirmed. I had ataxia.
Since then, my life changed in many ways. I had to take early retirement and resign from the Special Constabulary. The house I lived in was deemed unfit for my growing needs so we had to move. I now fill my days volunteering at the local library, walking the dog (which I can still just about manage) and writing.
Focusing on now
When I received the diagnosis of a condition that is not only progressive and degenerative, but also rare; so rare that it is not very well known at all – I was scared. What would the future hold? What would my life be like in 5, 10 or 20 years? What would it mean for my family? Most of these questions remain unanswered, because nobody can tell what their future holds. In reality, any person – ill or otherwise – is largely unable to answer those questions. I tend to try and focus on the now. I can still think for myself, communicate easily, I have a great support network and am still mobile. I’d be lying if I said that I didn’t get scared from time to time. I’d also be lying if said that I didn’t have times when it all becomes a bit overwhelming, but can anyone say, honestly, that they hadn’t ever felt like this at times? When times are hard, I look at my family and my life now, and in this moment, I am happy.