I was diagnosed with Friedreich’s ataxia when I was eight. I am 33 now – last month we celebrated 25 years together and I am still alive and kicking. I thought I would re-cap the past 25 years as having ataxia for so long isn’t something i could have envisaged when i was first diagnosed.
After being progressively clumsy as a young child I was diagnosed with FA - I had no family history of it. I was also diagnosed with cardiomyopathy although even now I don’t have any symptoms - I’ve taken CoQ10 since i was a teen so maybe this has kept it at bay alyjough very sadly I had to stop taking it this year as it raised my blood sugar (I was diagnosed with diabetes last year). When I was 9 I was diagnosed with scoliosis which is a curvature of the spine, this progressed quite quickly and I had corrective surgery when I was 12. This marked the end of my back problems, but it had a big effect on my ability to walk – I was very wobbly and sort of bounced from surface to surface. I decided to use a manual wheelchair all the time when I was 14 and it was a very difficult decision to make but I gained so much independence from using a chair that I never looked back.
As a way of gaining more independence I used a power chair outdoors when I was about 17 – I remember using it around college. This power chair also took me to work – I used to work as a CCTV operator then. At this time I started talking to people with FA online – I made some wonderful friends from whom I have learnt so much from over the years. I now run a local support group for people who have ataxia - the Ataxia UK Coventry and Warwickshire Support Group. Talking to others has become an invaluable source of support over the years. For example from talking to them I was encouraged to join a gym and I had been going to that gym for over 10 years – I used to benefit so much from this not only physically but socially too. Unfortunately my instructor was made redundand this year - I intend to look into alternatives. Exercise has always been a pretty big part of my daily routine – I have an exercise bike/hand cycle and various other pieces of exercise equipment which I use every day.
When I was 22 I found another job at the West Midlands Police in administration which I loved as I worked with some great people. However by the time I was 25 my contract here had come to an end and I was finding work very difficult as the general accuracy of my work wasn’t anything like what it was. So I took medical retirement and receive a very very small pension – much more than the money it is nice to have my working days acknowledged. A short time later I enrolled in a counselling course at college which I absolutely loved; I learned some invaluable life skills on this course and would recommend it to anyone.
When was 26 I was badly affected by the flu (I found out too late how invaluable the flu jab is for people who have ataxia!).I was still able to transfer and dress myself but after months of chronic muscle spasm I was unable to get back to doing this. I still lived with my parents at the time and my care was becoming a huge strain on them. I finally listened to what my friend Matthew Law who also has FA had been telling me for years and wrote to my MP asking for his assistance in helping me to find an accessible place of my own. Within six months I was invited to look the place that would become my home – a fully adapted ground floor flat. I began using a hoist and having carers to help me with personal care – at this time I used my direct payments to employ an agency who provided about three hours for me a day.
However I got really upset and stressed with arranging my life around agency care so a few years later I used those direct payments to employ Personal Assistants and my life improved a huge amount. At around the same time I started to have one urine infection after another as I was “holding it in” whilst waiting for carers to come in so I had a catheter fitted and it proved to be the best thing since sliced bread – I can drink what I like now and actually go to the toilet on my own now (albeit by emptying a bag) when I haven’ t been able to do that for about 10 years and no more continual infections!
Last year I had corrective surgery on my inverted feet which was a complete success – pain and spasms no more! I have even got back to being able to stand using a standing frame. Last year I started to struggle with feeling really down and it got to the point where I was crying all of the time. It took a lot of guts but I spoke to a doctor who prescribed antidepressants which have made a huge difference. This year I was diagnosed with type II diabetes which I take medication for but is very much under control.
Pretty soon after being diagnosed with FA I began to struggle with writing so I would use a computer. However a few years ago I started to struggle to type as my fingers became increasingly stiff. I now use Dragon NaturallySpeaki ng to dictate to my computer – this is how I wrote this webpage – and it’s proving to be fantastic! I am studying for a degree in and social care with the Open University and I now enjoy studying again thanks to it. I also started to struggle to use a mouse so I now use a joystick and buttons instead.
My speech is still very good and most days people have no trouble understanding what I am saying. In fact if anything I would say that it improved – about five years ago I had long-term speech therapy where I learned to control my breath whilst talking on the phone and at other times where I felt intimidated and nervous. I learned lots of other techniques too which have become a part of life. It also improved when I started taking anti-depressants. As it is I make full use of speech recognition technology; when I’m not dictating to my computer, I am telling my Amazon Echo Dot to play BBC Radio Two or dictating a text to Siri. In turn all this dictation is great exercise!
Most days I am out and about somewhere – either on a bus or train which I use completely independently and they have taken me to so many places over the years that it would be impossible to list them all here. I have been on some wonderful holidays over the years; many visits to Walt Disney World with family and many different places in Europe with friends who have ataxia. Mum and I have been on lot of lovely holidays in the UK too.
Living with ataxia has been very difficult over the years, but life hasn’t been without its achievements either. The most striking thing I've learned is that I can spend years living with a problem and refusing to do anything about it. Then I finally adapt and I think “why didn't I do this years ago?”