I contacted my Doctor's surgery to ask if they had any self help groups for people with chronic illness. They jumped on the idea and said they haven't got anything like that but would be willing to help me set one up in any way that they can!! They also asked if I'd like to go on the patient representative board!! RESULT!!!!
Maybe some of you could do the same thing, the members may not all have Ataxia but chronic illness if frustrating for everyone and maybe it would help the doctors to understand us better. xx
I live in Plymouth Beryl. The surgery here is great, the old school GPs have now retired and the new ones are really dedicated and have fresh ideas, exciting really! xx
Beryl Park said:
How lucky are you! Tell me where you live, I'll relocate. I've never heard of anyone getting
such co-operation, usually we're bad mouthing GPs. Well done, I'm sure you'll enjoy this! xB
I live in Wiltshire near Tisbury UK.At the moment I have been going to Salisbury with stroke victims for psychological help.As Patsy says on here its a different psychology.Stroke people with physio are trying to regain skills lost suddenly and we have skills we are trying not to lose.One is a sudden shock and how to come to terms with it.My Ataxia is progressive ,no hope and getting worse.We need something to help some of us come to terms with a disease that is not terminal but could be progresssive. We have to live alongside of it.Sounds as if you have a good local surgery and you may be providing a good service.Stick with it.There seems to be a gap in the market round your area.I am not coping well with all the adaptions.
Hi Marie, I've been adapting to arthritis for many years now and I think everything else which may (or may not) be Ataxia has been overlooked. It's really hard thinking that this can only get worse, but with this site I know that I won't be facing it on my own. I was born in Tidworth, not far from you :)
Marie Turner said:
I live in Wiltshire near Tisbury UK.At the moment I have been going to Salisbury with stroke victims for psychological help.As Patsy says on here its a different psychology.Stroke people with physio are trying to regain skills lost suddenly and we have skills we are trying not to lose.One is a sudden shock and how to come to terms with it.My Ataxia is progressive ,no hope and getting worse.We need something to help some of us come to terms with a disease that is not terminal but could be progresssive. We have to live alongside of it.Sounds as if you have a good local surgery and you may be providing a good service.Stick with it.There seems to be a gap in the market round your area.I am not coping well with all the adaptions.