Hello.About two years ago I was diagnosed with a progressive ataxia. Since then I have been trying to find someone else in New Zealand [preferably Wellington] but I can not. Is there anybody out there?
Hi there WitchyWoman, from a fellow Kiwi. I'm about 900 km south of you so not in Wellington unfortunately. I believe there are a few of us on this site, one from Christchurch and one from Auckland that I know of. If you click on the 'Members' tab you can get a rough idea of who is where.
According to a Gastro in Christchurch I have gluten ataxia and was lucky enough to discover this early enough that physically I'm not greatly disabled. I probably can't say the same mentally and from a pain perspective unfortunately.
I am so glad to hear from another New Zealander, Gluten Ataxia is a type I don't know about [I am still learning, which is one of the reasons I joined this site] please tell me.
I have been reading some of the things other members said and some of them are really similar to what I am going through, everyday there is a pain that wasn't there before. I want to learn to deal with this. I didn't think it was affecting me at all mentally but it is so depressing. I actually cried this morning when I spoke to an old school friend and she reminded me of something we used to do.
Hi Caitriona, my mother and I are in Wellington. My mother has SCA, type unknown, but her symptoms are pretty mild (in comparison to her brother in Australia, who is severely incapacitated.) I'm 42, and over the last year have come to the conclusion that I'm starting to develop very early symptoms, but have yet to see a neurologist - I've been referred, but still waiting for an appointment.
Happy to meet up sometime if you'd like?
Dear Caitriona, I live in the US, in the State of Michigan, far, far from NZ. Just wanted to say "hi" and wish you the best wishes in finding others in your area! ;o)
I’m in Auckland and stopped working a year ago. My symptoms are fairly mild but it does Impede some activities and the progression is very slow. I am hoping it won’t get any worse but I don’t know. I have a lot of time on my hands and find this quite frustrating and welcome interaction which this site offers. Glad to hear about another person in New Zealand.
Please keep in touch.
How good is that, you've now found three Kiwi's. I know there are more out there but they aren't on this site. Have you tried your local branch of the Neurological Foundation to see whether they know of anyone, or even the MS Society as they seem to look after those of us with orphan diseases in some places.
Good to hear from your David. After the wild 'summer' we've had so far I'm wishing we were closer to your end of the country.
Thank you to Helen, Lute, Rose and David. You are all so friendly and welcoming. Hearing from you all has really brightened my day and made me feel much better to know that there are good people who care out there.
That's the great thing about this site, there are such wonderful and understanding people. No matter what kind of Ataxia we have, we all are experiencing the same thing and we can understand each other and support each other. Nice to meet you and look forward to hearing from you again.
Thank you so much for your kind welcoming words.