I could live well even though I’m a disabled. But feeling of degenation makes me hurt and afraid. Recently I traveled to Russia, but the road condition was bad and I felt frustration at the fact I can’t walk alone. some medi that could halt the desease comes out, I’m okay.
It’s improbable that an actual ‘cure’ is on the horizon but… At this year’s NAF Convention, an eminent Neurologist Dr Susan Perlman, said that within 5yrs she was confident there would be more than one treatment specifically for ataxia.
Taking it one at a time is the best and really ONLY way to think of Ataxia. Thinking of what might be can only lead to bad thinking. I’m not talking about planning for the future but don’t do the possible what if game before anything happens. Remember, all persons with Ataxia are individuals and each case IS individual.
Biohaven is going to push for FDA approval for it’s BHV-4157 (Trigriluzole). Although there had been some statistical manipulation, I am hoping, it would generate enough interest for other Pharmaceuticals to join the race. Symptomatic improvement and or slowing the progression can only be replaced with cure by CRISPR. That seems to be so far away.
They say that every year at the Convention. 5 years and counting,…
When I went to my 1st AtaxiaUK Conference (2012), the hope was for ‘a cure by 2020’. At the time I was naive about ataxia, and felt hopeful. I’m a lot wiser now, and I realise the enormity of the problem, and as they say ‘Rome wasn’t built in a day’.
Thanks♡ You are very encouraging.
I completely understand. I used to be an avid traveler prior to my ataxia. NOW cannot visit places in Croatia, uneven surfaces, steps and nowhere to hold, no railings…one thing for it, stick to spain learn the language and HAVE BEST TIME EVER…WHERE ACCESSIBLE ENOUGH. using my walker. can still walk/use my 2 legs, JUST IMBALANCED WITHOUT./unsafe.
I can see myself just doing that…
I agree, as I visited Spain a few years ago (I was just using a cane, but now I use a rollator too) and it was very ‘disabled’ friendly! I’ve also visited Italy (since being diagnosed with ataxia) and was very impressed!
my symptoms started in my late 50’s and my diagnosis is sporadic Idiopathic cerebellar ataxia. I have had very gradual decline and will be 77 in November. I have adjusted to my capabilities along the way. My sister in law has MS and pleaded for new drug but when she started taking it, it had adverse side effects and she chose to stop taking it … I think eat healthily and exercise daily, do what you can is the best you can do. Hypnotherapy meditation, pace yourself and recognise that you will be fatigued easily. Stay in touch with others with ataxia too. Keep your weight down. I try different supplements … have stopped taking 5-HTP which neurologist recommended and have gone back to CoQ10 400mg in the morning. Might be psychological but I dont feel so tired today [5 days in]. Stay focused and enjoy what you can x
I was thinking about trying 5HTP rather than giving Sertraline another go. Then I looked online and read…
Ask a doctor, pharmacist, or other healthcare provider if it is safe for you to use this product if you have:
- Down syndrome; or
- a nerve-muscle disorder; or
- problems with your muscles.
Well, I can rule out Down Syndrome, but problems with muscles …
I started off taking CoQ10, then I read that Ubiquinol is better absorbed by women past menopause. Currently I have Ubiquinol-QH. For the most part, fatigue seems to be less of an issue, I can easily get through the day without napping
I did read that ubiquinol is better absorbed but it was much more expensive. I’ll keep it in mind and see how I go.
I pray she is right!!
Fighting against degeneration is important. Keep exercising, keep challenging yourself to do more difficult physical or mental things. It’s important to stretch those brain cells that aren’t working properly. We mustn’t give in to them.
I feel fatigue very easily, causing energy lack, causing hypersomnolence, causing depression. so my psychaitrist prescribed me Concerta. It can’t help my mobilities but help gain my brain energy.
Concerta is more commonly known as Ritalin. Have you noticed any side effects, any worsening of SCA2.
Concerta ( methylphenidate ) or Ritalin, is usually used for ADHD Although it had been used for other central nervous system disorder, to my knowledge, there hadn’t been any study to show it’s efficacy in hereditary SCA.
You mean Concerta is bad for SCA??
If your Neurologist has prescribed this medication there must be a good reason for it. You may feel better for taking it which is good, but if after giving it a decent trial period you feel no different, have side effects or feel worse, speak to your Neurologist.
My mobile ability doesn’t change but brain is better. And deperession is better. Anyway, thanks