I was 27 when diagonesed with SCA2 im now 30 for 2 years since being diagonesed I had physio and carry on doing the exercises at home which help I also see at rehabaition Dr once a year I also worry about my daughter as I know my SCA2 is headitary
I am worried for my children, too, Betty. It's the hardest part for me. I have to hope that with all the advancements being made in medicine there will be a treatment, at least, in their lifetime. If there is any silver lining in all of this it is that my husband was just diagnosed in 2015. This gives him, and our children, some time for researchers to find something. I am trying to focus on today and not the future, but that is really hard. I feel for you and I am so sorry. Keep active seems to be the best advice available right now. My husband hasn't had physio yet but I hope he will get some soon. He was just diagnosed 2 weeks ago.
Wilber, he is 42" we were just referred to hopkins ataxia unit. May take a few months to get in. I seem to pass all tests, MRI, EEG, emgā¦doc is puzzled, says I have all hallmarks of spinocerebellar ataxia but is more puzzled why my episode had virtually stopped for almost a year and then returned. Does anyone else ever had a type of 'remission" from symptoms?
Slurred speech getting better with core strengthening exercisesā interesting!
Hi 
welcome, itās good to know you are making progress due to core strengthening exercises. A friend has had good results learning to play musical instruments, a ukulele helped with fine motor skills, and a trumpet has helped with her breath control.
I am learning piano with my kids. Itās more of a challenge to brain- I love it.
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I would like to know these intense core strengthening exercises pls
Howāre you doing now?
I am currently seeing a neurologist ( movement specialist). He is of the opinion that a sweaty heart pumping cardio followed by other exercises ( strengthening / stretching/ core/ balance etc) is the best option.
FWIW, I agree 
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I wanted to let you guys know that my choking reduced within 15 days of starting the regimented aerobic exercise program and now after 6 months of starting the program( 30mins a day; 5days/ week of aerobic exercise) now i canāt remember the last time I choked.
Also the doctor compared my initial MRI to thatof 4 months later- he found 1% increase in cerebellum volume.
Now that doesnāt mean Iām walking better!
Itās good to know you had positive results with at least one symptom.
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Letās see how long I catch a break from choking, that is, how fast and when my degeneration catches on. The hope is to deter symptoms through exercise and also through the drug, triroluzole.
Are you involved with the clinical trial for Trigriluzole.
Yes, Iām involved in the drug trial for SCA by the drug, triroluzole (BHV 4157) for 2 years; I started on October 2020.
This drug is not a cure but might only slow down progression of the disease.
Pls see ānew research feb 2021ā
Iāve read posts on other support group from people also involved with the trial, I hope itās successful.
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Exactly which exercises, Iād like to know, if possible.
Eire,
My husband was diagnosed with SCA2 a little over 7 years ago. He is 34 years old right now and works full time. I would love to touch base with you.
thanks!
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Hereās hoping @eire gets back to you @swimchick530 ! Just tagging her here.
Wishing you and your husband the very very best!
-Arjuna from ModSupport
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