NEWBIE

[sefsha]

Hi my name is Sharon and I am 67 years old and having had various tests but no one was able to give me a proper diagnosis I eventually learnt that I have Cerebelum Ataxia. I am unable to walk unaided and my speech is slurred ( You could not shut me up at one time ) and my writing is illegible. It is great to havea group like this where you you hear about how othe people are coping and you do not feel so isolated as you are not on your own,

[Hidden]

Hi Sharon

Welcome to the site! You will find lots of helpful information here. What you've explained is carbon copy of myself. I also have permanent double vision and prayer prisms in my classes to help correct it. I have not driven in three and a half years. I am 65 years old.

[february]

Dear Sharon, A HUGE welcome to this site! You'll find many wonderful people on here for support and advice! I am 65 years old, live in the USA and was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) when I was 49 years old, although I had very minor symptoms starting at about 43 years of age. Over the years, I had genetic testing for the more common dominant and recessive ataxia's, which was always negative. Then in 2017, I had genetic exome testing and a single Niemann Pick C (NPC) gene was found, After a skin biopsy followed by a blood test, it was determined that I have ataxia due to Niemann Pick C disease. I not only have a single NPC gene, but an unknown variant as well. Anyway, I try to exercise for strength and balance each day and eat as healthy as possible. Over the years, I've also attended physical therapy which I find very helpful! My ataxia effects my gait/balance, dexterity, speech, swallowing and vision. It has progressed over the years! You are not alone in your journey! My best to you...,;o)

[LuisRodicioRodicio]

Hi sefsha!

These are our experiences:

First: If physicians agree that there is suspicion of a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P, Ataxia, etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while.

Recently (08-2018) and apparently with good results, Rock Steady Boxing exercises applied to PD patients are being tested to newly diagnosed PSP patients.

Rock Steady Boxing for Patients with Parkinson's: youtube.com/watch?v=XC1h4yg...(Not working as expected?)

Lou T. has studied publications on parkinsonism and synthesized studies related to substances that could slow the progressive symptoms linked to PD and other related neurodegenerative diseases. It is interesting to read this document:

"Supplements we use to Try to Slow Parkinson's Progression (and other neurodegenerative disorders)" (2018-03-11)

smartpatients.com/conversat...

Hugs and luck.

Luis

[sefsha]

Thanks to everyone.it's great to know there is so much support out there

[Litty]

Welcome

Snap we all have very similar symptoms x

[Veteran250 in reply to Litty]

Hi Sharon and welcome to our community...... you will find friendly helpful community members here. I have Freidriecks Ataxia..... falls indoors, walk with a wide gait, walk around using furniture, walls etc, cant walk unaided, use an electric wheelchair when outdoors shopping or around town

I am a Military Veteran, aged 75, and live in the Uk.

Don. 😀🌞🌹

[ConfusedAtaxian]

Welcome sefsha. I too am and have had Cerebellar Ataxia (unknown cause) for 4 years. Please see my post ‘a poem’ which describes Ataxia in detail. Hope you find comfort here as I do.🤗 Linda

[sefsha in reply to ConfusedAtaxian]

Thanks