How to treat ataxia.....

[Be_free]

How to improve or treat this condition of ataxia.........or pls suggest some tips for SCA sufferers.......

[HarryB Administrator]

Hi Be_free

Thank you for your post.

There are no cures or treatments for the ataxias yet. There is a wealth of research happening around the world giving plenty of reason for hope. In the meantime by best advice to you is to exercise regularly. Although this will not treat the underlying ataxia it improves your overall strength, keeps you mobile for longer and potentially slows down the progression of the disorder.

Most importantly though be positive. Always focus on what you can do, not what you can't.

Best wishes

Harriet

[Be_free in reply to HarryB]

Thanks

[Happyfacexx]

If you scroll through some of the posts you will soon see the name sonvox if you click on his name you will see tons of really helpful advice about research and supplements, I would suggest that would be a great place to start, I bought a cheap second hand treadmill as sometimes it’s an effort to get out and I don’t like going out in the rain as it makes me feel more unstable, so at least I can walk indoors every day

[Be_free in reply to Happyfacexx]

.okkk

[february]

Dear Be Free, I exercise (safely, of course) for strength and balance and eat as healthy as possible. I also go to physical therapy each year, as my health insurance pays for about 20 visits per year! I've had ataxia over 20 years now! My best to you..., ;o)

[Be_free in reply to february]

But we don't have any health insurance

[february]

No health insurance (for PT), no problem! Just go online and look up exercises for strength & balance. You can even specify handicapped exercises for strength & balance. Then you can do them in your home. There's even exercises for sitting in a wheelchair or regular chair if need be. I do exercises on my own, always holding onto something sturdy or standing by something sturdy to grab onto incase I start to fall. I also do floor exercises (leg lifts and stretches) lying on the carpeted floor, as no chance of falling...,ha! Now the only problem I have is getting down and back up from the floor...,lol! Can you tell falling is not my idea of a good time? I've taken some pretty bad falls over the years, sometimes severely injuring myself! My best to you...., ;o)

[Be_free in reply to february]

Injuries are also there for my dad too......u've been with this for 20yrs..did it worsen or ...myfather is having ataxia for 7 yrs...can u suggest some tips for balance....if u r willing can u say abt your case more detailed..

[february]

Yes, my ataxia has progressed over the years! Initially, I was diagnosed with Sporadic (Idiopathic) Cerebellar Ataxia (unknown cause), but just found out in 2017 (thru genetic exome testing, then skin biopsy, finally blood test) my ataxia is due to Niemann Pick C1 disease (recessively inherited...,extremely rare, especially adult on-set). I have problems with gait/ balance, dexterity, speech, swallowing and vision. I can still walk (carefully) in my home, but use a cane (stick) or rollator when I leave my home. A good exercise for balance (I stand by a ledge or kitchen counter so I have something to grab onto if need be) is standing on one foot for as many seconds as you can and then switching to the other foot. I keep doing this over and over again, trying to increase the seconds. A good exercise for strength is sit and stand. Sit on the edge of a firm chair and slowly stand up (without using your hands (I cross my arms infront of my upper body), then slowly sit back down again. I do this 20 times a day. Like I mentioned before, you can find some good exercises for strength and balance online! ;o)

[Be_free]

Thanks for this......my father is having spinocerebrallar ataxia ...which due to genetic cause.......or unknown and I have doubt....is there any difficulty in writing and typing for u....becoz my father can't type becoz of shivering....