diagnosisataxia

[petbar]

diagnosed after hospital stay with progressive cerebellar ataxia which is progressing more quickly than I expected

[xray25]

hi betpar i progressed really quick but have stabled out now hopefully for awhile

[petbar in reply to xray25]

now trying baclofen and hoping for the best thank you for your reply

[jomo50]

Hi my CA was very progressive at first. Now on mychophenalate which seems to have stabilised things. Now had CA for 10 years. Hope this helps

[petbar in reply to jomo50]

Thank you, i'm on baclofen at the moment only had it 1 week and slowly increasing dose so fingers crossed

[sylviagreenhalgh]

It took the docs 5 years to diagnose me and when I went to see the GP he said I'll put you on anti-depressants and refer you for counselling- both of which I refused. The thing about CA is that you don't know how you will be tomorrow, let alone in a years time- It seems to go in stages of staying the same, then getting worse, then getting better. Get all the info from Ataxia UK- they gave me so much info and the local groups ( if there is one in your area ) is really helpful to hear other people stories and how they manage.although the condition is nasty it is manageable but if you have always been very active it takes some time to accept it. I live alone and the local council sent an OT to the house to advise on rails and adaptations. I have a grab rail at the side of the bed to get out of bed in the mornings. I changed my shower cabinet to a wet room which is much safer. I have ramps to get out of the house. When I am bad I use a wheelchair- mine is a NHS powered wheelchair which I find heavy and awkward so tend to use a lightweight chair but then you have to find someone to push it !I have my feet and hair done at home as I think it is important to look after yourself.Make sure you are getting any benefits you are entitled to.The council sent someone to put rails and hand grips round the house especially on the stairs. if life gets hard ask your GP to refer you for counselling. Apart from CA I also have a small benign brain tumour and also Hydrocephalus( water on the brain ) and in 2 weeks I go to hospital to have a shunt put in to drain the fluid off. I find if you can keep a positive attitude and focus on what you can do rather then the things you cannot do anymore it all helps. One thing I tried this year was I went with a group to Lourdes and just going somewhere new ( to France ) and meeting new people was great and I have noticed a change in my feelings generally and my walking is much better since i WENT. iT IS SO EASY TO FEEL THAT YOUR USEFUL LIFE IS OVER BUT IT ISNT- its just different. the shock of the diagnosis takes time to sink in. Be as active as you can- I do 3 exercise classes a week and I also used to do line Latin American dancing and that was great but beyond me now. Look after yourself and see the illness as unfortunate but it does not define the person you are- so go for it . all the best Sylviax