What Next?

[DeniseLB]

I have been trying to catch up on everything that has been said and it is remiss of me to not follow all of you. I am the strange one that put the post out A Sad Day, not over yet, but have been getting through it. I did want to thank all of you that sent me really kind messages by the way.

I do not have a genetic type of Ataxia so the cause is apart from what I finally saw on an MRI scan, Cerebellar Ataxia. My thoughts on this are that for whatever reason our brain has somehow broken down all normal feeling with the use of the rest of our body. This is hard to say as my surname is Brian, so any misspelling is an accident, I have read the posts on diet and am still not sure that is a cure. I did see damage on my own MRI and I was told it could not be fixed at the moment!

There is not anything that I have read that I have not gone through, so what can I possibly say that anyone would even want to listen to!

I stated from scratch as I couldn't write my own name, then I went on to typing and then talked to walls to improve speech and then it goes on. It would be good on this site to join some sort of group, I know its possible but I am not sure how.

If any of you would like to set up a group with me then I would love that.

I have to go to Wales next week but I would like to hear from you. Hope to include B on this.

Denise xxx

[tedjohnson]

Hi Denise

I would suggest that you contact Ataxia U.K as they will help you form an Ataxian group. Just talking to others can be most useful and obviously Health unlocked is a first class way of keeping in touch

Best wishes. Ted

[DeniseLB in reply to tedjohnson]

Thank you Ted, but!

I have actually already done that and they want me to try and set up a local group in my area, what I meant was a group on this actual site. I know you can follow posts as I have done that too. It is difficult where I live as there is not even a disabled place to go even my local MP said I could always set one up! On my own by the way without their support. I am not saying that I don't have the guts to try either but I guess I am looking for like minded people. I do vent on this site sometimes and have been incredibly unhappy with my treatment through the NHS and loads of frustrations because of our condition. My aim is never to upset anyone as I know that our condition can be much worse for some people.

Anyway it was just an idea!

[ninotchka in reply to DeniseLB]

I think I know how you feel! So very frustrating. It is disheartening when there is no disease "management", no treatment, and no cure!

[DeniseLB in reply to ninotchka]

sorry I missed you, have been down to Wales for my mums funeral!!! The way I cope is to almost laugh about how ridiculous this whole condition is. To get people to understand I have even said think of a 2 year old and you want to train them to use such things as a knife, falk or spoon well they would probably do better than me! Some people get it and those that don't well whatever! I am not at my best at the moment but I will keep trying!!

[ninotchka in reply to DeniseLB]

You have a good sense of humor -- and that will keep you roaring for a long time! Our own inner strength is sometimes all we get. I can become oh-so sad at times....

I do believe in miracles although I also believe in science. Go figure. As we age, it does seem like it's just one thing after another, heaped upon us.

[DeniseLB in reply to ninotchka]

I like you!