Jay is home now:) he has ataxia

[Jayswife-24]

There is no cure known for this anyone know where I can find more information on how to help him?he can walk with an aid and feed himself he talks with a slur I'm worried that this is how it will always be but I can't find any helpful information other than symptoms on the internet

[jojofrg]

Can't give you any advice but really hope Jay gets the help he needs from a specialish rehabilitation team.

But many congratulations and so pleased to hear his home! Good to hear a good news story of survial of ICU.

Although things are obviously still tough, I'm sure that time will do wonders, and thank goodness for this very significant degree of progress for you both, which sadly not the case for us all.

Best wishes

Joanne

[garrymeister]

I've had a tremor ever since my release from the ICU that gets worse when I try to push myself. Recovery after the hospital takes a long time. I read some where (cant find it again but peter may know) that 80% of us never get back to where we were before we were hospitalised. I don't want to be negative but as far as recovery is concerned start to think in terms of years rather that months. A friend who was in ICU for three months was told there would be little improvement after five years. A long time I know but I am now entering my third year and I have stopped worrying about getting better and I am concentrating about making the best of what I have got, anything else is a bonus. Try not to take all the responsibility on yourself. While you can help, Jay will have to do this one himself. It will be hard for him and he may not always be grateful for your help. But take it from me it is himself he is angry at not you. Recovery and frustration go hand in hand and it takes a long time to get used to your(in my case) new weaker body and new personality. But I still loved my wife and was very concerned about the pressure I was putting on her. That made me angry too.Take a deep breath, this is going to be a long one. but it is obvious from your posting that You and Jay are strong people and you will make it. Stay strong and you will both be blessed. I love hearing about Jays progress it always reminds me of what it was like for me and how far I have come. Tell Jay that I could walk twenty meters unaided when I left hospital. Today (two and a bit years later) I walked six kilometres and have worn out two pairs of new balance in the last two years.

I hope this helps

Garry

[ICUKaren]

Hi, am delighted to here that Jay is home. Please see below for a link to Ataxia Uk.

ataxia.org.uk/pages/what-is...

Hopefully this will give you the information you are looking for and provide links to other sources of help.

Best wishes

Karen

[AndJan]

So pleased for you that Jay is home ! That really is progress. If you Google Ataxia,you will find so many web sites that can give you imfo,there are self help groups etc,so do look it up.

As always ,try to keep strong,it is actually harder for you than him,so please try to take good care of you,and have some time "out " if you can ,thinking of you and wishing you all well.

[Offcut]

I can not offer any help other than I hope you both move forward in a positive way.