A daughter's point of view


#1
I believe I may have met some of your members when we did a workshop recently at Salisbury Hospital.I think a lady called Rose is a member. To explain briefly;
When I was 13 my father was diagnosed with Parkinson's Disease and it dominated in our house . I grew up with disability.My father was a very mobile man and it was a tragedy then in the early 80's that he was diagnosed when he was 50 and there was little known about it then and drugs were so crude.In my 20's I used to have dad to stay regularly but it did upset me and I was glad then to get back to my normal life.
When I was 47 I noticed difficulty in balancing and walking .I was told my one neurosurgeon it was stress so I insisted on another opinion.I was then diagnosed with Cerebellar Ataxia. It does seem a bit of a coincidence as there is quite a crossover . I now can see what my father faced and I am trying to be optimistic. Ataxia is a progressive neurological disease which affects co-ordination, balance, speech, and writing and in the last year i find losing my speech has been the worst symptom
I remember Dad's speech was quiet and volume a problem at the end but it sounded quiet but normal. My movement are not as exrtreme as his were and I am not in any pain.Dad had a lot of pain and the drugs did not help mentally.Fortunately there is nothing they can give us but my cognitive abilities are good.Dad could not start and initiate movement til the drugs worked so I believe he lacked a certain neurotransmitter.I do have an intention tremor but it is not shaking all the time.I cannot walk unaided now and think what a brave man and all those with Parkinson's must be. It is taking some time to come to terms with the diagnosis.I am fascinated with the genetics of it all and think there may be a link although have been told it is ataxia rather than Parkinson's Disease.I would welcome any input from you or your members.
Yours sincerely

#2
Hello Ataxia,
I have just started to use this forum again after a break and noticed you haven't had any replies yet. I can't offer much, not any actually, advice on the points you query but encourage you to persevere with this forum because people can be really helpful and comforting and you are not alone.
Best wishes.

#3
Thanks for your reply..I get a great help from my own website called Living with ataxia.We constantly swap various views and tips that make living with and accepting a progressive disease.
Ataxia

#4
Hi Ataxia

Thank you for sharing your thoughts and experiences.

We still don't understand the causes of either Parkinson's or Ataxia. Changes in certain genes can sometimes play a role in both conditions, but so far researchers have not uncovered a genetic link between the two conditions.

You can find out more about Ataxia and the support available for people living with the condition through Ataxia UK:

http://www.ataxia.org.uk/