atiaxia

[coltclose14]

i have atiaxia any help

[HarryB Administrator]

Hi coltclose14

Thank you for your post. What type of ataxia do you have?

Harriet

[coltclose14 in reply to HarryB]

i do notknow it is minor atiaxia

[Angelcake1]

Hi Coltclose14

Welcome to the forum, if you have a browse around you'll find a wealth of help and knowledge from those whom like yourself have ataxia. If you have something specific you'd like to share or ask about, go ahead, I'm sure even if it's been discussed before it will get answered. Let us know what kind of help you need and someone will be happy to point you in the right direction. 😀

Look forward to hearing from you.

[february]

Dear Coltclose 14, A HUGE welcome to this site. There are wonderful people on here for support and advice. I thought (for about 22 years) I had Sporadic (Idiopatic) Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) but recently found out I have ataxia due to Niemann Pick C1gene and a variant. It's a long story, which I won't go into right now. Anyway, I find exercising for strength and balance and stretching (my muscles are soooo stiff) Is helpful, as well as eating as healthy as possible (lots of veggies and fruit, little processed foods, dairy, sugars). Also, physical therapy and aquatic (water) therapy has been helpful in the past. Stay as active (safely, of course) as you can, as if you don't use it you lose it...,ha! For instance I must hold onto something sturdy when doing any exercises standing, and sometimes sit in a sturdy chair. I like doing exercises while lying on the floor, as there's no chance of falling. The only challenge I have is getting down on the floor and back up again...,ha! You can Google exercises for strength and balance, as well as good ones to strengthen your core. My best to you..., ;o)

[wobblybee]

🙂 On being diagnosed, I was told I had mild Cerebellar Atrophy. The description didn’t mean a lot to me but the symptoms were beginning to be scary. I had problems with spatial awareness, difficulty with decision making and multitasking, and I began to dread shopping because the general busyness and lighting in stores and supermarkets was so disorientating. There were often times when it took a lot of determination not to leave my trolley and simply walk out. Cerebellar ataxia is much more than a balance problem. For a while I’ve noticed I have Cognitive issues too, and this is not something that gets discussed very much. Putting ‘pen to paper’ is much easier than having a conversation. 🙂xB

[planetzed in reply to wobblybee]

Hi B,

I recognise some of your symptoms in myself. Truth be told I thought I was going mad not being able to decide simple options, negotiate crowds and walk over stripey lines.

I think you're right that cognitive issues are not frequently discussed along with ataxia. In fact, my balance is regarded as not being too bad (though I do bounce off walls all the time and find it hard to put my pants and socks on). Button shirts and sorting change in my hand are both very difficult....

[wobblybee in reply to planetzed]

🙂 If I have more than a couple of things to hold e.g. handbag+walking stick+purse I’m in real danger of dropping one of them. Even sorting money can be challenging... I generally prop myself against a wall to get dressed 😉xB

[planetzed in reply to wobblybee]

Yep, yep and Yep!