i must go to one of these meetings or at least chat with someone

[cclive35]

i must go to a meeting, at least someone understands, i broke my ankle and the hospital insisted i used crutches, when i explained i had attaxia they just didnt understand and said they would teach me to use them!! after a doctor googled it im finally healing. mind you thats after breaking tib, fib and ankle twice plus weeks in hospital where i was treated like i was an unintelligent, patronising patient. when i used to wobble when trying to walk they even thoughr i was acting!!!! please please if anyone else breaks a bone send the doctors here!!!

[wobblybee]

Hi cclive35!

I hope you're now off crutches and healing well. How you managed on

the crutches with Ataxia has my mind boggling! It's awful when people

are callous. I was once in hospital after a seizure, thinking back I had

other symptoms I now associate with Ataxia. I was upset with attitudes

then. It costs nothing to show a bit of compassion, but it means the

world to the person receiving it. Have a good weekend!

[cclive35]

its nearly a year now and its finally healing, of course the crutches and me were like a comedy act. the compassion may have been there but medical staff had no idea what attaxia was or how u should be treated.i just got myself home by discharging myself. sat in for 3 months and just used wheelchair and zimma frame. i need to get back to gym so i walk straight now

[Hidden]

As you haven't put your location any where it s not possible to say where the nearest meeting/person who knows about ataxia is. It is shocking that none of the people at the hospital new about your condition I think there are some sort of flash cards available through ataxia uk [someone will no doubt tell us wont they harry b] I don't know how much information is on them but there may be enough to avoid this situation let us know.

John

[cclive35]

i have heard of a meeting in this area so ill make the effort. ive had this for 20 years now and its just frustrating after all these years its still not taken seriously, i have a card but it just raises eyebrows lol

[jurgen]

Hello "cc",

you forgot to tag your question.

Is it ok by you if our Admins, Harry, tagged it ?

*******************

Tags are like helpful labels that allow you to find useful posts quickly. They appear at the bottom of questions and posts. When you write a post you should add relevant tags to your own posts and questions by typing them in the tag box. By clicking on a tag you will be able to find all the questions and posts that have the same tag, making browsing much easier.

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Regards

[wibbly]

It seems that the next "Ataxia Awareness" should be aimed at the medical world !!

[lonesome]

Hi cclive35....its lonesome here dont know if you remember us chatting before?

The meeting of our support group is now not until beginning of december...if you want to go to it let me know and I'll put you intouch with the lady that runs it......get her to e-mail you if you want.

Its totally informal and you are in a relaxing environment......its a chat over coffee.

[macmike]

Hi cclive, my name is Michel Beaudet, I'm 50, have FA and live in Quebec, Canada. Are you member of internaf? If not come join us, International Network of Ataxia Friends is a mailing list for ataxia patients and family/friends which serves as a support group and information exchange vehicle. There's also a website full of info at internaf.org

For info on how to subscribe, go see, internaf.org/network/servic...

We also have a facebook group -> on.fb.me/internaFB

And for Canadians with Hereditary Ataxia we have a Facebook group -> on.fb.me/chataxia

Et pour les Francophones avec une Ataxie Héréditaire Il y a un groupe sur Facebook (FAH) -> on.fb.me/fataxieH

[lindilu]

I agree with "wibbly" - dotctors.dentists and nurses should be made more aware of our problems.

[HarryB Administrator in reply to lindilu]

Hi lindilu

I agree it is in an incredibly frustrating situation when doctors and other health professionals have limited or no knowledge at all of ataxia. Ataxia UK is constantly trying to address that problem. We have produced a set of medical guidelines (which are currently being reviewed) with supplement versions for GPs and a separate one for physiotherapists which we encourage people to give to their doctor/therapist. We also have a medical registry which any doctor can join to be kept up to date with the latest research in ataxia. In addition we have held two, with hopefully more in time to come, seminars for health professionals to increase awareness of ataxia amongst them. These were both well attended. We are hosting with Ataxia Ireland an Ataxia International Research conference in a few weeks for Researchers with an interest in Ataxia.

I am sorry to go on but I hope you feel re-assured that Ataxia UK are trying to raise awareness amongst the health professions as much as possible.

HarryB

[cclive35]

im sure mine was a rare case however none of the staff knew about ataxia and if they did,they certainly didnt take it seriously , i just feel its 2012 not 1912. im sure ataxia uk are trying to make the medical world aware but i think its not as rare as it once was and should be part of the training. i am a support worker for other dissabilities including fragile x, autism, downs etc so hopefully im not a troublesome guy lol and yet i needed to discharge myself and get friends to carry me up my stairs. i was getting worse in hospital as i kept breaking my leg. i felt like a schoolboy being told off as they kept saying my leg was non weight bearing. i couldnt help putting weight on it. after 4 breaks and i think a member of staff googling it, they finally understood. they gave me a more sturdy cast and a zimma. people say i should sue but to be honest this ataxia has had a massive affect on my life. i have cried myself to sleep nearly every night for nearly 20 yrs. then i realise just how lucky i am each day im working. icant work now but hopefully now im healing ill be able.

[HarryB Administrator in reply to cclive35]

Hi cclive35

I do agree with every point you have made. I had a foot operation a few years ago. They wanted to send me home using crutches. When I said I couldn't use crutches as I had ataxia, they looked at me blankly as if I was in the wrong and said 'well, you just have to hop'. I did try to use the crutches and a zimmer frame to prove my point to them, needless to say I failed miserably on both and proved myself right. I explained when I was upright it wasn't an option not to put weight on that foot and in order not to I would either have to bottom shuffle or use a wheelchair. I didn't have a wheelchair at the time and the hospital wouldn't lend me one. I had to organise getting one myself (which I did) otherwise I wouldn't have been able to go outside. My next battle was insisting on being referred to physio when the plaster came off and I had to start weight-bearing on that foot. Thankfully I did and I can't tell you what a difference the physio made. They knew nothing about ataxia but they did by the time I was discharged!

As a medically-retired doctor I have sympathy with the medical profession as there are so many common diseases you have to know about, it is impossible to know about all the rarer diseases as well in any kind of depth. After medical school you learn about diagnosis and management of particular conditions by experience and exposure to people with those conditions. It goes without saying that the more people with a particular condition you see, the more knowledge you will gain about that condition. A GP might only see 1or 2 people in their career with ataxia. However If you have one of the more rarer diseases yourself or as in our case ataxia, that doesn't make the situation any less frustrating. Although I described how Ataxia UK is trying to educate medics about ataxia specifically there are other organisations, for example Rare Disease UK , who are trying to ensure a better deal for anyone with a rare disease, by, among many other things, improving education to doctors and other health professionals.

I think everyone with ataxia will be able to tell a similar story of contact with medical professionals which is why mutual support, be it on-line or face to face, is so important.

Harriet

[cclive35 in reply to HarryB]

i just sounded patronising i think. even when a doctor came down from oxford and explained my needs unfortunately as shifts change day and night and notes are not written or read. i think doctors do an amazing job and of course they cannot understand all rare illnesses. however when having tried to politely explain difficulties i feel to be heard would be nice. apparantly the hospitals policies and procedure is not to provide aftercare for a patient who discharges themselve. im 40 yrs old and my mother paid for private healthcare visits lol. im sure you have heard all the stories before . anyway i must admit im so glad that awareness is improving!! it doesnt seem long ago that i was almost transferred to farringdon wing for tests!!! i just owe so much to dr gale from luton and dunstable hospital. i have always had to do things by trial and error. i suppose to sum up i dont understand ataxia so i can hardly expect the medical world to, however it would be nice if most didnt just dismiss it. dr harry i think we should write a book lol

[tinat]

Hi cclive35

please do try and get to one of our support groups and branches if you can. They are made up of people with and affected by ataxia and offer support and friendship. Lots of our groups and branches get involved in raising awareness activities which we all know is so important, as well as fundraising and social events. We have groups and branches all over the country and many people attend more than one!

Let me know how you get on.

Regards

Tina

[TimS]

Hi Cclive35

There is a support group you can be part of without too much effort, virtualataxia.org.uk We run twice weekly chat sessions where a group of people with ataxia get together and have a chat (about all sorts [not the liquorice based confectionery!])

[neta in reply to TimS]

I am glad you have the on-line site. I have found nothing but ignorance about ataxia. among drs (who are not neurologists), nurses, physiotherapists, and the public. No one seems to know what I am talking about. I am young and look good so I am routinely asked to "sign this" "go there" "the bathrooms are just upstairs" and so forth. There is no awareness, at least not where I live.When I go to the theatre, for example, the bannister (along a wall) is not directly near the rows. No one understands why 3 steps from the wall/bannister to the row is a problem for me. I have also cried and prayed. I am not seeing any "miracles" from the research world despite the many millions spent. Sometimes I feel as if I am the only person in the world with ataxia. Neta