Is there anyone living in the North Devon/West S... - Ataxia UK
Is there anyone living in the North Devon/West Somerset area who has Ataxia? My GP has no other patients with it.
sorry I live in Essex, but since the occurance of Fredrichs Ataxia (the most common one?) is about one in fifty thousand and a Large GP pratice is around ten thousand so a large pratice only has only a 20% chance of having someone with FA so I am not surprised that the GP has no other patients.
I would give them the guide from Ataxia UK "Management of the Ataxias: towards best Clinical
Practice" which is under the section for professionals.
Hi Tiggywinkles
That is good advice from Nigel about about giving the guidelines to your GP. He/she can either download these from the website ataxia.org.uk from the 'Professionals' section or alternatively Ataxia UK could send you a hard copy. I hope you are also seeing a neurologist.
Have you been in contact with Ataxia UK? There are a number of Branches and Support Groups around the UK and they would be the best people to ask if there one near you. The helpline number is 0845 644 0606.
Best Wishes
Harriet
Morning Harriet,
I do see a neurologist - was already seeing one as I have epilepsy which started when I was about 29. I have also been in touch with Ataxia UK and from them have got my GP to refer me to the Ataxia Centre at The John Radcliffe. The consultant I see is happy for me to go to Oxford as he only sees a handful of people with ataxia too.
As far as a local group, I was sent the details of one hoping to start in West Somerset soon.
I am trying to make some contact with other people as my situation has changed so much over the last year. Firstly my husband, Bob, being taken ill and dying in June and coping with living on my own and then getting a further diagnosis of my ataxia being Freidriech's Ataxia just over a week ago and having to tell both my parents and sister that it was genetic. It is bad enough having something wrong with you, without having to tell others that they gave it to you or may get it themselves.
I am still waiting to hear from Oxford - any idea how long before appointments come through?
Yours,
Heather
Hi Heather
You have really been through the mill in the last year. I am so sorry you are having to cope with all this. I was diagnosed with FA over 20 years ago only to find out 6 years later that I don't actually have FA. Despite a plethora of tests the cause of my ataxia has never been found. I have always lived on my own so can only imagine how you are feeling at the moment. It is good that it sounds like you have a family support network around you.
In answer to your question, I would love to help but I am afraid I have no idea how long before appointments come through.
Best Wishes
Harriet
Hi Tiggywinkles
I have CA diagnosed about 7 years ago.I go to Oxford and am coming down to your area on holiday for the first week of June.If you are in the self catering , holiday business it was difficult to find a wet room in a disabled/dog friendly self catering place suitable for Ataxians.
Although I can just about move my legs I cannot get over ridges.This is very hard to explain as most people seem to worry about wheelchairs and width of doors etc.
I don't do ledges ,steps and baths.Showers need to be level.There needs to be plenty of grab rails.It is a very peculiar disability and others would not understand.It is the balance that is affected with me.
Marie
Ps Get in touch with me again at the end of May if I can help in any way
Hello Marie,
Thanks for your message. I understand what you mean about suitable accommodation. It is very difficult to make somewhere suitable for someone with any sort of disability as what is right for one isn't for the next. When we set ours up 10 years ago it wasn't something we even thought of.
It would be nice to meet up with you when you are down this way - where are you staying?
Yours,
Heather
Hello Heather, I'm sorry I'm unable to help you location-wise, as I live in the US. You sound as though you're dealing with so much! I can relate as I have ataxia (diagnosed 10 years ago) and lost my husband to illness when I was 42. Although I'm "across the pond", I can offer you support and understanding! You are not alone in your journey! Hugs, Rose..., ;o)
Although I don't live in your area, my GP has never had a patient with SCA6 before & I can identify with you... I have just received an appointment for Oxford - at the end of July!
The Ataxia Clinics are only once a month... 
Thanks for your answer. How long from your referral did it take for you to get your appointment?
Yours,
Heather
About two months I'm afraid. Hope yours comes trough sooner
OK, so two months from referral to receiving your appointment then another 2 until the appointment date - Is that right? I know my GP wrote at the end of April so on that timescale my appointmnet won't be until September! I hope it comes sooner too.
Yours,
Heather
Two months from referral to appointment then three to appointment date, sorry!
Oh, not so good. I know nothing will change my condition, but it will be nice to be seen by someone who understands what I'm talking about.
Yours,
Heather
* oops, 'through'
Hello, yes I have cerebella ataxia, live in north devon. Seen by neurologist 3 monthly but disease progressing. GP helpful but also a bit at a loss what to do with me! Will help in any way I can. Adnyl
