Thought process long after diagnosis

[PatsyIpswich]

Having moved home several times, my medical records have moved back and forth. Despite being advised my records are computerised and available, my neurologist tells me this isn't so. When I view my records via gp website, there is no mention of Ataxia. Having had all available testing, apart from being born prematurely in 1942, there is no known cause. However my present neurologist has diagnosed genetic cerebellar ataxia. My question is, should I care? I have been referred to neurophysio, occupational therapy, podiatry, orthotic department and wheelchair clinic. Now feeling unsafe with rollator. Thanks Patsy xt

[Plain]

Hello Patsy. Having read your interesting wording. You say should I care.

Having the same genetic cerebellar Ataxia as you, My thoughts are just accept what the doctors have said. Then try and find something to do which makes you happy, I’m housebound , very rarely get out now. Long for the old days of pushing my four wheeler around the shops .

Find pleasure in knitting and listening to audio books , must admit the days are long , but enjoy playing word games on my I Pad. Take care Patsy and hope you can find something to enjoy.

[PatsyIpswich in reply to Plain]

bless you for this comforting response.

[cocoa]

I am in the situation as you. I am told I have idiopathic cerebellar ataxia but assuming it is genetic.

My worry if it is genetic, my children and grandchildren.

I understand your feelings.

Take care x

[PatsyIpswich in reply to cocoa]

thank you for responding. Yes genetic should be used only when proved. IMHO.

[Trinity1948]

Hello Patsy It was good to read your post,we met at lunch in the last ‘live ‘ conference so I sympathise with you. I too have late onset genetic Ataxia diagnosed 22 years ago and have deteriorated greatly in that time but I am still struggling to walk and talk. There are so many things that I can’t do which I know applies to us all. I recognised in the early days that my symptoms were similar to my maternal grandfather,who lived with us,also my mother,(who I looked after during the last year of her life )and her sister.As cocoa has said we worry for our children,grandchildren and now we have great grandchildren. Let’s hope and pray there will be a breakthrough in their lifetime. Best wishes Trinity 1948

[PatsyIpswich in reply to Trinity1948]

thank you so much for your encouraging response. I recall approaching my 60th birthday with a sense of loss but approaching 80 next month is far worse. I am working hard to control my vibes and not find things to blame. I just need to understand what is happening to me .. much like our government . Take care