Advice

[joboe]

Good afternoon Patrick here from Lancs just recently been diagnosed with ataxia would love to get some tips etc etc as how to manage this condition.

Thanks in advance

Patrick

[wobblybee]

Hi Patrick

If you contact AtaxiaUK they'll send you an information pack

AtaxiaUK Annual Conference is in October and held at a hotel at Heathrow Airport, details on their website

Also on the website, a list of support groups held throughout the UK.

Another good source of information is the National Ataxia Foundation website

Best regards xB

[joboe in reply to wobblybee]

Thank you very much for your help B much appreciated

Love the handle by the way will have to think of a good one for myself.

Patrick x

[babygirl123]

Hi Patrick.

What kind of Ataxia have you been diagnosed with?

I have been diagnosed with Cerebeller Ataxia (unknown cause) for nearly 2 years. There are lots of people on this site that can give you good advice on all sorts of things related to Ataxia, from their own experiences. Good to get tips from others with the same problems. that you may have in the future. As will Ataxia UK.

Good luck.

[joboe]

Thank you for your reply Babygirl much appreciated.

I have Cerebeller ataxia as well, unknown cause also just been diagnosed June 10th after 3 years of numerous hospital visits doctors etc etc I have another Mri to go to then see my Neurologist again on Dec 17.

It is nice to fine a site like Ataxia where you can talk to people, get help and information because at times you feel like you are stumbling through the wilderness.

Patrick

[Litty]

Some great advice already. I can only add this. Do as much as you can for as long, try to stay positive, it is normal to have bad days though. Accept that you need extra sleep, I try to have an hour or two every afternoon. Have a rest day if you have a very busy one too.

Exercise as much as you can. Walking is great and gets you outside. Try and do a hobby that you really like. Hope this helps : )

[joboe in reply to Litty]

Thank you for such kind words Litty.

I enjoy walking and cycling or should I say I did but with the dizziness the weak legs I'm kind of curtailed in that aspect.

I can still manage to do a bit in my garden which I love with help.

I'm also lucky that I enjoy reading and scrabble etc etc.

Patrick

[Litty in reply to joboe]

Hello again. Just some thoughts. Because I cannot balance very well I have a stationary bike and rowing machine that I put by the window so I can see my bird feeders while I exercise (so boring otherwise!). I do like gardening and found one of the kneelers with sides to help get up really good. I use a walker in the house but I am really lucky and can just about make it around our field. It has a mown path which helps and I copied a great guy in america (on Living With Ataxia) who does marathons and uses a converted baby jogger pushchair : )

[joboe in reply to Litty]

Hi Litty

It sounds like you have found a way to get round your obstacles it's amazing how ingenious we can be when needs must.

Patrick

[Brommie]

Hi Patrick, what type of Ataxia do you have?

[joboe]

Hi ya Brommie.

I have cerebellar ataxia I was diagnosed June 17th but have been suffering for years not knowing what was wrong with me

[february]

Dear Patrick, I was diagnosed with Sporadic Cerebellar Ataxia eleven years ago (unknown cause/symptoms 24/7). Although my ataxia has progressed (I started using a regular cane when I leave my home five years ago, and graduated to a quad-cane about two years ago for more stability). Anyway, the best advice I can give you is keep moving the best you can and do exercises for strength and balance daily if possible. Also, stretching muscles is good, as mine get so tight! I found physical and aquatic therapy to be helpful, as well as eating as healthy as possible! My neurologist has always told me, "if you don't use it, you'll lose it"...,ha! Although difficult, definitely words of wisdom! My best to you..., ;o)

[joboe]

Thank you february for your kind words and your words of wisdom.

Patrick

[nerak]

Hi joboe ,

Hope that you are well and coping not easy but we all get there. Where abouts in lancs do you live as I run an ataxian support group for Lancaster and morecambe for ataxia uk. It is more a natter group there are usually three of us and two carers so if you are close you are welcome to join use or if you just want to talk on the phone my no is on the ataxia uk site .

Karen Martin

[joboe in reply to nerak]

Hello Karen.

Thank you for your message I live in Accrington.

I don't drive but I can usually get to mostly anywhere by bus or train with a lot of help from girlfriend and a lot of planning and I do love to get out when I can I'm not going to let this illness keep me a prisoner in my own home.

How often do you have your we natters cos I would definitely love to call in for a chat and a brew.

When is it best to call you.

Patrick

[nerak]

Hi Patrick we meet about once every two months but if you fancy a day in morecambe we can arrange that

Will tell when we arrange our next natter

Karen

[joboe]

Good evening Karen.

Lovely to hear from you I would love to spend a day in Morecambe and have a natter.

And I so much prefer Morecambe to Blackpool lol

[silkwood]

Develop a sense of humor.I have found laughter a great help.