Ataxia UK is the national charity for everyone affected by ataxia. We have been running for over forty years. Our mission is to support people affected by ataxia with research, information, welfare grants, campaigning and the opportunity to meet and help others in the same position.
SCA global is a worldwide collaboration focusing on spinocerebellar ataxias, a group of over 40 dominantly inherited ataxias.
ARCA global is a similar initiative but for the recessively inherited ataxias.
The main objective of SCA Global and ARCA Global is for ataxia clinicians worldwide to work together in order to speed up finding treatments. Because these conditions are so rare, there is an urgent need for a global effort: patients, researchers and clinicians need to work together on a global level to advance knowledge in the field.
Both initiatives have been launched and progress is being made. SCA global had a first very successful conference in March 2019.
More information on both of theses Global Ataxia Initiatives can be found in the summer 2019 issue of Ataxia Magazine here and here.
Kimberley Edwards has lived with Friedreich’s ataxia (FA) for over 20 years and has now started the fantastic campaign Places to Change: calling for local authorities across North Wales to listen to the needs of people with disabilities, and to ensure there is accessible facilities for everyone. Here she shares with us her personal story of living with FA and the reason behind this campaign.
The clumsy one
I was diagnosed with FA at 11 years old, although my symptoms became apparent from the age of 10. One of the first factors that indicated an abnormality about my body was the way I ran; my legs would flick out side-to-side rather than be in line with my body.
Ever since I was young, everyone has known me as ‘the clumsy one’: always falling over, always dropping things, and an all-round accident waiting to happen. My parents would ask me to make a cup of tea, but then ask my sister (who is six years younger than me!) to carry it through to the living room &ndash...
Hearing speech and background noise
I have lived independently for 20 years now and am dealing every day with the effects of ataxia. I am always striving to keep myself independent, and to make my life as easy and manageable as possible. If you feel that there is a device, adaptation or tip that could benefit others with ataxia, just let me know and I can discuss it here.
Like many people that have ataxia, I have what is known as Auditory Neuropathy Spectrum Disorder which put simply means that I cannot distinguish the spoken word from other noises within my environment. This is a real problem when there is a lot of background noise, i.e. in a busy restaurant or pub, or in a full stadium/arena. It can also be a problem when the room you are in has an echo or if you are on the telephone with others talking in the same room or the TV on. If you are alone then just turning the TV sound off is an obvious solution, but this can be annoying for someone else in the same room.
In the last issue I discussed using a kettle tipper – a simple device that enables the kettle to tilt whilst staying anchored in the same position. Here are some more ideas you might find useful.
I received a letter (yes, a letter – pen, ink, paper ‘n’ all) from Mr Peggie in Cardiff recommending an electric kettle from Breville called ‘Hot Cup’. This is a hot water dispenser that boils and releases the water directly to a mug or cup placed beneath it. You can buy them online at Amazon. Many of you will recognise these as similar to coffee/tea vending machines in public drinking areas. This is a great alternative to a kettle tipper and comes highly recommended from Mr Peggie.
Moving hot drinks
Of course, pouring the boiling water is not the only challenge in successfully making scalding-hot drinks. You need to transport it to a comfortable part of your home in order to drink it. I use a wheelchair for mobility, so find a ‘bean-bag’ la...
In the last issue I discussed ways of transporting drinks when you have the balance problems that ataxia brings us. I suggested using a lap tray when you ‘enter the world of wheelchairs’. It’s this ‘entering the world of wheelchairs’ and the types of wheelchair you might get that I wish to speak about in this article. For me, there came a time where I became too tired of struggling with my balance. The answer was to get a wheelchair.
Dread turned to excitement
The very thought of using a wheelchair had filled me with dread for about 10 years, but the first time I actually used one, that dread turned into excitement. I could move around without having that fear of falling over every minute of every day. I felt excited about building a life for myself around this newfound freedom.
For 10 years or so I used only a manual wheelchair. As I was driving 20 miles to and from work during the week and 10 miles to and from my parents’ at weekends I did not...
My life so far has been a multitude of experiences: some amazing times, but also much pain and trauma. Even so, I can now say that I look forward to my future and through my adversity have learnt to grasp life fully, appreciating how far I have come and how far I still have to go.
I was a healthy, happy little girl in early childhood; I was eight years old when my walking and balance began to deteriorate; I wasn’t walking straight and was constantly covered in bruises. My mum took me to the doctors, and finally, after five years when I was 13 my life changed forever, I was diagnosed with Friedreich’s Ataxia: a rare genetic condition that affects balance and speech.
At that time, I was very confused and didn’t fully understand my condition. My friends and family were incredibly supportive and kept me going through very dark periods. As a teenager I felt despair and no hope: I went to the lowest place possible with no fight left in me. But fight I did...
Sarah Allen is part of a unique group of co-authors whose members have two things in common: the ability to write historical, heartfelt horror, and the desire to fundraise towards finding a cure for FA. She tells us about their novel which was published four years ago in Spanish, has just been translated into English and has given them all a lot more than the opportunity to fundraise.
"Six years ago, we started writing a collaborative novel, The Legacy of Marie Schlau, from co-author Maria Blasco’s pre-outlined plot to raise money for research into Friedreich’s ataxia. 17 contributors answered our call: we spoke different languages; were from different countries all over the world; had only the internet, the will to do something proactive towards raising awareness and funds for research into Friedreich’s ataxia and Google Translate to bring us together!
One of our co-authors, Susan Allen Carter, says that “the well-being I gain from this project derives from...
Richard Brown, Trustee of Ataxia UK, has spent a lot of time helping others. He was delighted to discover that people were willing to help him in return. After a year of online funding, Richard was finally able to purchase his long awaited for Trike, which has improved his life ten-fold. Now, he wants to say 'thank you'!
At the end of last year, I launched an online appeal to raise money for an electric Trike. With a lot of support, I raised £4,000 and picked up my ‘new wheels’ last week. Thanks so much to everyone who supported my appeal. The Trike has changed my life in so many ways. It has helped me do things I already did, but now I can do them independently, which takes the pressure off friends and family who support me. Most weeks, I have several meetings in the village, sometimes in the evenings; having to rely on others to take me or pick me up lessened my independence. We also have friends who live at the other end of the village, at the top of a ...
I have pushed myself to the limits in many ways over the years, both at work and in my own time. I’ve worked in IT across universities with titles behind my name, and designed the electronic cars of the future; I’ve travelled and rock-climbed around the world with seven languages under my belt; for a long time, I thought that life couldn’t get any better.
But in September 1999, everything took a turn. One day at work, I suddenly blanked out. Nine days later, I woke up confused and in hospital with a neurologist standing at the end of my bed. He was talking slowly to me, but I kept drifting in and out. Seven weeks on I was told for the first time that I have ataxia. My neurologist explained the condition, but was unable to say what had caused it; I had an SCA type which he hadn’t tested for because it was so rare.
As the months went by I began to fall a lot, picking up many broken wrists and elbows and dislocations. By 2003 I was in a wheelchai...