Spino cerebellar ataxia type 6 - new member

[woodesden]

Hi,

I'm Sally and new. Have spino cerebellar ataxia type 6, for about 20 years. Would like to meet anyone with the same disability,

[Hidden]

Hi Sally,

I don't know what's wrong with me so I'd be no help. Been misdiagnosed although I have loads of symptoms.

There are a few people on here with ataxia/gait issues so hoping you get an answer. If not to the exact type of ataxia you have then maybe get some advice.

It sucks being limited to what you can do. I think everyone here would agree.

You can chat about anything on here there are lots of good knowledgable people.

Have you been offered any waking aids? I got a stick but couldn't coordinate or hold it as arms too weak.

[woodesden in reply to Hidden]

Hello Amalia,

Thank you for the quick response. I am now 75, was diagnosed with ataxia about 20 years ago. Before that I had about 10 years of misdiagnoses and theories from medicos. Found out from a long lost first cousin that there is ataxia in the family. (He inherited it from his Dad, my Dad's brother. Very frustrating knowing that something is wrong with your body, but no diagnosis.

Normally get around with a Zimmer frame or just holding onto furniture, but dislocated shoulder/broken arm has put kybosh on that for the moment. I'm lucky that my husband has taken over as housewife, but I miss the bit of independence I had. Oh well, I'll persevere with the exercises, but crikey they do take a time!

Hope all will go well for you and thanks once again.

Sally

[Hidden in reply to woodesden]

I'm lucky I have a long narrow apartment and lots of furniture so usually just fall against stuff.

You have definitely joined the right group I'm hoping for you here, as everyone has misdiagnoses and frustration but also answers as some have been going through it for a long time.

It sucks that you dislocated your shoulder. I can relate a little as my right side has a life of its own so I chopped off a left finger last year and had surgery no. 5 recently and they are holding off to see if the need to do one more but it's been frustrating as my dominant right hand is now my rubbish weak one and I use my left for everything and it's been bandaged up lot this last year and a bit. Good thing is I'm a plastics nurse or was, so even after surgery I go home, get my kit out, take off dressing fab plastic surgeon has done but not so fab at dressings and I redo a more comfortable practical one. I can also check healing and take my own sutures out. Was so excited to find you can buy lots of surgical tools online. I'm growing a little collection. That arterial clamp will come in handy someday for something 😀

[angelite]

Hi Sally, your posts have landed on the Functional Neurological Disorder website - I wonder if perhaps you meant them for the Ataxia website ? If so, please click on the link below :

healthunlocked.com/ataxia-uk

Kind regards, Angela x