|FA & I: Celebrating 27 years together
I was diagnosed with Friedreich’s ataxia when I was eight. I am 35 now – this year we celebrate 27 years together and I am still alive and kicking. I thought I would re-cap the past 27 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 although very sadly I had to stop taking it as it raised my blood sugar (I was diagnosed with diabetes in 2016). However after speaking to manufacturers I was excited to start taking a particular brand of CoQ10 which has actually been shown to lower blood sugar in September 2018. I will let you know if I see such benefits …
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. Since I was a teen I have struggled with muscle spasm especially since becoming less active. I take Baclofen for this and find that exercise and wearing knee immobilisers help.
As a way of gaining more independence I used a powerchair outdoors when I was about 17 and I remember using it around college. This powerchair also took me to work – I used to work as a CCTV operator then. Around this time my speech started to become affected although even now my speech remains pretty good and I’m understood by most people most of the time although anxiety when speaking held me back for many years. I have found practicing the Lee Silverman Technique and taking CoQ10 very helpful.
Also around 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. 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!
In 2006 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 because I didn’t get the help I needed it became full blown depression. It took a lot of guts but I spoke to a doctor who prescribed antidepressants which have made a huge difference to many aspects of my life.
In 2016 I was diagnosed with type II diabetes which I take medication for. My doctor is still trying to get the right combination of tablets - I’ve had a few deficiencies in 2018 because of this.
I now use a powerchair which has an advanced seating system and is very supportive. My local NHS Wheelchair Services have been great in supplying accessories and pressure cushions following having some pressure sores.
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 NaturallySpeaking 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.
Most days I am out and 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?”
|This website has been around sinse 1998, and although it's changed a lot over the years it's always been about me and my disability. Over the years I have used many different hosts and website design packages. For the past ten years or so I have used 1&1 as my host and I have always been very happy with it. I have always wanted to learn how to build a website from scratch using Adobe Dreamweaver, so about three years ago I got in touch with Polar Solutions and arranged for a trainer to come out to my home to teach me at my own pace. So I now design this website using Adobe Dreamweaver and the skills I learned on that course. I designed the buttons using Cool Text.