NEW

[DOTS01]

Hello. My name is Trish. Im new here and am very excited to have found you.Diagnosed wiith a rare form of Ataxia 18 months ago and since then have had little or no support.Im afraid that being a qualified nurse works against me but contrary to the opinion [ shes a nurse she will be ok.....infact Iknow nothing ].

Where do you think I should start?

[HarryB Administrator]

Hi Trish

Thank you for your post and welcome to the forum!

The Ataxia UK website ataxia.org.uk has a wealth of information on ataxia and is accessible to all.

Are you a Friend of Ataxia UK?

Best Wishes

Harriet

[TWITTERING in reply to HarryB]

hello, my son is struggling with getting any help with his cerebella ataxia.His legs are getting weaker,and now has a buggie to get around. Is there any one in the Chichester area that he could contact to help talk about the condition,or meet. At the moment not a Friend of Ataxia, not sure how you join .

Twittering

[HarryB Administrator in reply to TWITTERING]

Hi Twittering

Thank you for your post. I am so sorry to hear your son is struggling.

You can either join Ataxia UK through the website ataxia.org.uk, phone the helpline on 0845 644 0606 or email the helpline at [e-mail]. There is more information about the helpline at a ataxia.org.uk/use-our-helpline.

Ataxia UK has a closed group on Facebook for parents of children with ataxia. If you would like to join please contact Steph Marley at [e-mail].

Ataxia UK has also produced a leaflet specifically for parents of children with ataxia-

ataxia.org.uk/Handlers/Down...

I don't know how old your son is but there is a closed 16-30s group on Facebook which again he could ask to join by emailing Steph Marley at [e-mail]. There is also a website for 16-30s with ataxia-

ataxia16to30.org.uk/

Finally there is a network of Brances and Support Groups throughout the UK. You could either ask on the helpline if there is a group near you or look at the following link-

ataxia.org.uk/a-list-of-bra...

I hope some of the above information is helpful to you.

Best wishes

Harriet

[Cubsfan]

Hello and welcome. I was diagnosed with cerebellar ataxia 30 months ago. Finding inforamation is very difficult. Few doctors are knowledgable about it. I've found that vitamin supplements B1 B12 E & Folic Acid are very helpful. I also use Alcar. Phyisical therapy has been very beneficial. Exercise as much as possible. Try to stay active and positive. I was hospitalized for 1 year due to head injury which was likely cause of my Ataxia. I was 53 at the time and had been active my whole life to that point. My. Hats off to all the wonderful people in the nursing profession! There are many different forms of Ataxia. Check on YouTube there are some valuable posts there.

[DOTS01 in reply to Cubsfan]

So pleased you had such a positive experience with your nurses. Thanyou for such a warm welcome. I have asked for referrel as this body of mine reacts quite strongly to even the smallest of doses.I think we should all take care even alternative medicine affects different people in different ways.Please dont get me wrong, I believe in many a;ternative therapies but as they say, beware the small print.

Take care all and be safe

Trish

[pollybanana]

Hello and welcome. I was only diagnosed last December and it is all a bit hard to understand, although I have had symptoms for quite a while. Joining this forum makes me feel not alone and that is important. I am sure there are others better qualified to offer advice, I am learning too. Stay positive.

[pammyann]

Hi l was diagnosed with SCA6 about 18 months ago. Luckily my GPknew about ataxia and referred me to the ataxia clinic at Sheffield. Fairly long wait but worth it. There are just a few other ataxia clinics so worth checking this out with your gp. Good luck. Pam

[Marz]

There are several causes of Ataxia - as others have mentioned. Have you considered Gluten Ataxia. B12 Deficiency is also a cause and levels need to be way above 500 to prevent neurological conditions. Also do you have Hashimotos ? - auto-immune Thyroiditis ?

I can suggest the book - Why Isn't my Brain Working - by Dr Datis Kharrazian. An excellent read.

In my case I think I have all three

[ritaa]

Hello and welcome to the group. What type of ataxia were you diagnosed with?

[DOTS01 in reply to ritaa]

My faulty gene is A1010 Iknow little else.More research is being done on it I believe.

[carol31271]

sounds similar to my situation, I was a qualified nurse I had to finish work 11yrs ago, I had heard of ataxia & had some dealing with it. But not cerebellar or freidrich ataxia ( which I have )I hadn't heard of them, so I know where your coming from! I've found one doctor that had heard of it, but admitted they didn't know much about it and said I'd have to tell most medical staff about it because it's relatively rare. Ataxia UK provides a lot of information through their helpline 02o78203 900 They will send you any information relevant to you & your nearest ataxia centre.physiotherapy helps try to get one with neurological experience a neurologist should be able to help set up rehabilitation services for you.

Take care & I hope you get the best support. Carol ☺x

[Litty]

Welcome

It is horrid for us all. Good tips though.

Probably do as much as you can for as long as you can. Exercise and stay fit. Speech goes so practise. Good luck x