My dad was diagnosed with OPCA in his 30s. That was 30 years ago and I’m happy to report that he is alive and well. Walking is very difficult for him but his arms function well. His speech is slightly slurred but it’s not that obvious. As far as we know, my dad is the only one in the family with the disease and no one else has had it. Since his OPCA is sporadic (my dad was told that it’s non-hereditary but that was 3 decades ago), is there a chance I will get it at some point in my life? If yes, when is the onset? Thank you.
I dont think 'onset' is obvious. It's only when you think back, you can identify symptoms.
It's different for everyone too. x
I was diagnosed about two years ago but now suspect that I have had it most of my life. I am 72 now. Looking back I can see evidence of it when I was is school. Such things as lack of coordination, poor writing, etc.
I am much the same, only diagnosed in the last few years but always had symptoms.
Unfortunately, when going to a consultant they don't look at the whole picture and only the part of the body they specialise in. It took until I was about 60 for me to be referred to a neurologist.
My mother had ataxia but was not diagnosed until after I was! Not for one minute did I suspect that I had an inherited condition but when I was referred to the neurologist, the first question I was asked was whether other family members had balance problems.
I don’t have OPCA but SCA and 30 years ago I would be surprised if they had any genetic testing for ataxia. I was never told my mother’s ataxia was hereditary so it was a shock to find myself at 50 showing the same symptoms she had. Without genetic testing I doubt that you could count on anything NOT being hereditary. Unfortunately these things have a different onset and progression for each individual. If you don’t already have it apply for a private disability policy just in case. I had one that pays me for five years and it saved my life. Since it only pays for five years it was fairly cheap. I got it at age 40 when I was working.