Ataxia UK

Starry, Starry Night

Starry, Starry Night

Unable to sleep - feeling like yuch, so I thought I`d come on and say what a nice night it is. Looking out the window at bright stars and patchy clouds - moon is hiding somwhrer. Had another blackout today - luckily I was lying on my bed so I didn't fall and break anything.

I watched the Tom Criuse film on dvd Oblivion - pretty naff to be truthful................ :-(

Had a visit from physiotherapist on Tuesday, to do physiotherapy assessment (phew that took some concentration) at my home to see what my needs were. coming back next wednesdya with her assistant to see how far I can `walk`.

Are these people for real? I would have thought the wheelchair and me saying I can`t walk would have giving it away.......................... :-O

There are times when this ataxia sca6 thing can really get me so down, I hate it so much, really hate it. Then there are days when I think or say to myself - `it`s not too bad etc, etc and just I just get on with life (but it`s not that easy).

Well, catch you all later

5 Replies

Hi John-H!

Re neurophysio. I had my first appt last week, at my request. To be honest, it was a complete

waste of both her and my time. I'd been enveloped in brain fog for a couple of days and had

been unable to throw it off, but since these appts are like gold dust, I turned up. Basically, the

first appt consisted of advice. For instance, think about what needs to go upstairs to limit the

trips you have to make. (was that a pun?) Leave often used items out on the worktop to cut

down the number of times you have to reach/bend. Consider a perching stool.

She gave me a further appt in October, for info re exercises.

D'you remember I asked if you might be interested in a Newcastle Support Group? You said

to let you know.

Well, the venue will be: The Holiday Inn at the Metrocentre. It's situated on the road

where TGI Friday and Frankie & Benny are. As you know (being local) you can get to the

Metrocentre by train or bus, if you don't have a car. I'm told the hotel is 3 stops on from the

bus station. Date and time still TBA. Expect it to be very sociable and I hope a few laughs!

So, something for you to think about!

Another uplifting pic, keep them coming! xB


I`ll keep it in mind and hopefully I`ll be well and fit enough to attnde.

My blackuts are my main concern at the moment,.


Based in Newcastle upon Tyne. Looking forward to date and time.J


Dear John H, Way to make a crummy night into something worthwhile...,lovely pic! Glad you're OK after blackout...,I'm sure that's frightening! You are not alone in the way you feel about ataxia. In terms of physio, I live in the States and had physical therapy recently. It took all the energy I could muster up just to get through it! Hard to know what your pt was thinking (not thinking) regarding walking when you're in a wheelchair. Remember, you're not alone in this, as those of us with ataxia understand! Thanks for sharing..., ;o)


Hello John H

I'm sorry that you are having a bad time lately. Hopefully it will be sorted soon. You are right about the Ataxia, it stinks!!!

Take care



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