progression

[laddie]

Iwas told progression was an individual thing but I would like some idea of what to expect.I have recently been diagnosed after first noticing problems

18 months ago.I am 72 and feel that I have been sidetracked.

[Razzy]

Do you know which type of Ataxia you have,? I do know that although I have been diagnosed SCA 6, I am no where near as bad as my eldest sister was at my age , so it is an individual slow progressing disease .

Sorry I can't be of more help , but good luck and do try to stay positive

[laddie in reply to Razzy]

Although I have had some blood tests they were negative or normal so I have no idea which type of Ataxia I have .The neurologist told me it was

progressive and untreatable but I do intend to persue things further if possible my age seems to be a hindrance

[Litty]

Progression is very individual, but as a rule the later you start, the less severe, I THINK. Having reached you 70s (congratulations!) without showing signs has to be a very good thing.

Depending on which sort of ataxia you have, and an awful lot of people do not know, it can effect the rate of progress. Also, if it is a genetic abnormality, the number of repeats on your chromosome CAN have an effect.

Most people find that their co-ordination gets worse, their walking becomes more difficult and their speech gets more slurred.

I inherited SCA1 off my dad. I had a genetic test and knew for about 5 years before I started showing signs. I have experienced symptoms for about 10 years. In that time I have progressed from using one walking pole to two and now sometimes a wheelchair .

It will take you some time to come to terms with ataxia. You might also have trouble having to use mobility aids but they are good signals to others that there is something wrong.

Try to tell yourself that you are still here. Even though it would be great not to have ataxia, it could be much worse. The most important thing is to fight it and keep as active as possible for as long as possible.

Good luck

Litty : )

[laddie in reply to Litty]

thankyou for your reply. The consultant also said that as this was a

late onset case progress would likely be slow.To look on the bright side the Ataxia has taken my mind off the cardiac condition which I

also had diagnosed at a similar time. I have a pacemaker and defibrillator

so that problem is being dealt with.

I had two days holiday last week and what I did notice was that away from my usual enviroment my mobility and confidence was not as good

People on the whole were very considerate when they noticed my

stick or when I used my mobility scooter.

[AliceS]

I have early onset ataxia (diagnosed at 18/19). I've had a few genetic tests and a lumbar puncture and a muscle biopsy, none of which showed anything up. I'm now 33, I use a walking stick the majority of the time and a wheelchair sometimes too. My neurologist said this year that he thinks my ataxia MAY have stopped progressing. Basically who knows. The worse you get, the better able is your body to cope with changes. So is it always progressive? If they don't know what type you have, do they know you'll degenerate? Anyway, I say enjoy what you can do and whatever happens happens.

[laddie in reply to AliceS]

thankyou Alice S I like your attitude .I have spoken with my GP who's opinion is that it will not help to have a definate diafgnosis as there is no treatment anyway. He will offer practical help as required. This seems a quite helpful approach.I am gradually coming to

terms with my situation.I have done a lot of things during my lifetime so I have to be

content with what I can manage now although I do not have any enthusiasm for a great deal at present.