Hi! I have been recently diagnosed with ataxia. I have a family history of the condition (so I already know what to expect in general terms). My father passed away three years ago. He auffered from Frederich’s Ataxia. I am 39 yrs old. I didn’t expect this to happen to me. My neurologist ordered labs, MRI and other studies in order to identify where its coming from. I have some balance issues and starting to have slurred speech (at times). I still work but have noticed slight changes in writing. Any recommendations as to treatments that have worked, nutrition or any general info? I would greatly apprecite it.
Hello, my name is Jim and I have been diagnosed with ataxia too ( sca8 ) and I also have slurred speech at times l have found that the more I talk during the day the worse I am , so I talk less and save my voice ( if that makes sense) In my case that is not a bad thing. I talked to much before. And if I get tired my speech is worse.my other symptoms also seem to be worse when I am tired, so I try to maintain a routine and get plenty of sleep.
Welcome. Very sorry to hear of your diagnosis! Unfortunately at this time there is no cure but investigation is happening all the time so who knows what tomorrow’s gonna bring? Exercise is very important to our illness. I can’t stress how important it is to keep your muscles and joints healthy. Also try to keep a healthy diet. You should also consider taking Vitamin D3 to keep your bones healthy. Ask your doctor about vitamin B12 also. Most importantly, keep your spirits up!
Hi. Welcome to the site. And sorry for your diagnosis. I will tell you what I did.
Made the genetic Dx of SCA-6 with blood tests.
Looked for for any food that I may be allergic to, and which can effect my symptoms adversely.
Join NAF (National Ataxia Foundation)
Talk to neurologist to add your name to any study.
Although there is no cure yet, exercise is the only thing that can delay the progression.
Now that you mention it Jim @olfella … the more I talk during the day; the more Frequently I “stumble” with words. I sometimes have difficulty with thought process… I mean to say something and something else comes out. Thanks for the info.
Is there any type of exercise recommended? I’ve done some reading and exercises such as Aquaerobics, pilates and even yoga are helpful. I was doing cardio and strength training before as well.
Sounds like you’re doing just fine with your exercise choices. Cardio is probably the most important since it works the heart and movements. But also add some strength training. Most importantly is to keep your safety as the priority.
Some of the exercises Beryl Park mentioned are good. https://ataxia.org/11-exercises-for-ataxia-patients/
nobody EVER EXPECTS TO GET IT.I was 40. Now I am 43 and recently my 47 year old brother has been diagnosed with the same sca2 as mine. No surprise there as hereditary. EAT HOME MADE COOKED FOOD…EXCERCISE, AS MUCH AS YOU CAN, WALK, USE YOUR OWN LEGS as long as you can, sleep a lot, generally avoid emotional upheaval…take vitamins, ginko biloba, vits basically b12 orientated, as bs are the best for nervous system…take stock what’s important in life, WHAT’S NOT…be patient, take it all in your stride…perhaps join self-help group, BUT MAINLY STAY POSITIVE. this ataxia is a liveable conDItion. worse than ataxia happens, cancer, then I start to worry, not this inconvenience…In life see challenge, NOT A PROBLEM. NOBODY CAN TELL YOU PROGRESSION, HOW FAST OR NOT…Happy living! we only get one shot at it, so DO BEST AS YOU CAN, FROM WHAT’S LEFT. Good luck! and stop worrying about stuff BEYOND YOUR CONTROL…
If a close blood relative had FA, that’s probably what you have too… The good news is that there’s a compound, MOXIe, that has shown to improve symptoms and is awaiting FDA approval (https://friedreichsataxianews.com/2019/10/15/topline-results-moxie-trial-omaveloxolone-show-significant-benefits-fa-reata-reports/), and may be available within a year.
Other pharmaceuticals that have been shown to maybe help, and are available with a prescription, talk to your doctor:
Interferon gamma (https://www.ncbi.nlm.nih.gov/pubmed/26634868)
Things that are available over the counter, without a prescription:
Vitamin B3 (https://friedreichsataxianews.com/friedreichs-ataxia-experimental-treatments/nicotinamide-vitamin-b3/)
I second what everyone else said about diet and exercise, and just wanted to add that you should take stock of things that might be putting additional stress on your nervous system. Are your shoes uncomfortable? Glasses need adjusting? Hair getting in your face? Even if you think you’ve consciously gotten used to those things, addressing them will probably make your walking better.
HI, Keep up your spirits and be as positive as you can.Exercise is very important and try and eat healthy and cut out or reduce alcohol if you can .I was diagnosed in 2010 when 64 (Now aged 73) with SCA 6 and now have poor balance and use a walking stick occasionally in crowds or on the street especially is it slopes.I go to the gym 2/3 times a week (treadmill or standing bike,some weights 4 kg curls,sit to stand and floor exercises)Also do yoga at a class for 45 minutes(was going to a yoga class for 1 1/2 hours but have recently found that class too strenuous) I find sitting for a couple of hours can affect muscles and movement so get up every hour or so when watching TV just to stretch the legs .I have purchased a folding travel scooter for use in shopping malls and the occasional trip but walk as much as i can albeit wobbly gait.Keep positive and maybe the researchers will came up with something that will help us
Welcome Mari88 As has been said, a good varied diet and exercising within capabilities will stand you in good stead. Sitting still can often be the most comforting thing to do, but getting going again can be twice as hard. So, do exercise, try to do something you enjoy and it’ll seem less of a chore It isn’t necessary to wear yourself out, in fact that would be counter productive, just keep moving as regularly as possible
Omg! So true… This has totally changed my perspective about things (even more). I was just saying the same things this morning to my BFF. Focus on today and modify the things I have control over (such as eating, exercising, etc). Avoid stressing out over simple things (still working process ). And stay positive.
Thanks for the info… It is really helpful. I have an appointment next month and will ask my Doctor about this.
Thank you for the feedback and info. It is good to know I found this site and can find helpful info. Keep it up with your yoga classes! I’m planning to start as well.