SCA type 2

[vinupr]

Hello every one,

My Name is vinu radhakrishnan from india, i am 33 years old boy. I have SCA2 type,Today i consult my doctor for regular check up.I am taking two medicine (Amandel, Rilutor).I am taking these medicine for one year, I did not feel any constant changes but my doctor said it reduce your problem very slowly.Any one please suggest better idea for this matter..my father have same , my mother have very sad about me

Looking forward to receiving your replay

Thanks

[HarryB Administrator]

Hi vinupr

Thank you for your post. Unfortunately, as yet, there is no scientific evidence that any medicine is effective in treating the ataxias. However I would strongly recommend that you keep active and do as much exercise as possible. As well as improving your general well-being regular exercise can slow the progression of the condition.

My best wishes to you and your parents

Harriet

[vinupr in reply to HarryB]

Thank you very much for your advise

[vinupr in reply to vinupr]

Can you share some exercise video...if possible

[sarb1 in reply to HarryB]

Hi, what sort of exercise? 10,000 steps daily or cardio?

Thanks

Sarbjit

[HarryB Administrator in reply to sarb1]

Hi Sarbjit and vinupr

It is difficult to recommend any particular exercise as capabilities of everyone who has Ataxia are different. I strongly believe that everyone with ataxia needs their own personal regime recommended to them which in turn will lower the risk for any potential injury.

Personally speaking I have been doing Pilates for the last couple of years with one-to-one weekly sessions and my own practise in between 3-4 times per week (I have an idiopathic cerebellar ataxia) and have seen a huge improvement in my abilities and strength. Pilates is focussed on stretching muscles and strengthening the core. This increases my heart and breathing rate itself. It is a balance finding type and length of exercise that is beneficial for you but doesn’t tire you out or leave your legs feeling like jelly, which in turn would compromise your ability and safety for the rest of the day.

There are videos of exercises on YouTube you can watch but my advice would be to be careful if copying these as you obviously don’t want to injure yourself.

Best wishes

Harriet

[Voice1 in reply to HarryB]

Thank you. I to do Pilates and yoga and 10000 steps.

I have started meditating to which helps. All the best

Sarbjit

[tata86]

I don't reply well.. but just let you know some good news..

ncbi.nlm.nih.gov/pubmed/286...

Try Nilotinib.. Lead author of above paper is my mother's MD.

My mother is not SCA but MSA, but I know some patients sca who are administrated Nilotinib. Most of them get efficacy. Don't let dismiss my comment..

In my country, patients try this off-label. (it's just revealing info nowadays, so need large scale clinical trials. But we don't have enough time. you also know.)

Hope you get better.

[sarb1]

Hi, Yes currently nothing that can help to a large extent. I have sca12 which originates from North India. You have to keep positive and be active. Neurological conditions need a lot more recognition. For my sca no research is not taking place as not enough people have it.

Take care

Sarbjit

[auntiesally]

Hello, I have sca2 diagnosed dec 2018, I have not been offered any medication? Main problem is with walking, can only walk 5 metres, seems to progress quickly, have now noticed that my hand coordination is weak? This does scare me.

Regards to you and your family