Headed to neurologist next week. Diagnosed with idiopathic CA. What do you feel has helped or caused you problems and for which CA.
I really feel that good Nutrition and regular focused movements has greatly helped my ataxia. I was diagnose in 2006. I started getting MRI's every year after that. Two 1/2 years ago now I was put on this schedual because of how well I have been doing.My Cerebellum has been stabilized.
In 2007 I stopped all refined sugar and alcohol. My Dr. Suggested that because alcohol disrupts the cerebellum if it's not a problem just to leave it out so I did. Then I read about Gluten intolerance. So I had a blood test that came out that I was NOT intolerant but my Dr suggested I go off all Gluten just to see how I felt for a few weeks. After a few months I noticed a difference so I stayed off. With each year I seem to be tripping much less and it hasn't effected my speech etc. This way I absorb all the vit and minerals that I eat daily.
Focused movements: I noticed when I don't move as much it's harder to do the next time and if I slack off I don't walk as well or function quite as well as I do when I have exercised that morning.. I do lot's of stretching, Yoga, Pilates and walk on the treadmill right now. I use the Wii Fit plus for balancing games and cognitive thinking games and other games. It make moving more fun I think.
I have Sporadic SCA but I know it helps all ataxia. Even people that are in a chair can move something to get their heart rate up.
I think thing that cause problems for my ataxia is if I take a nap longer than 25 mins. If I need more I take another 25 at another time not together. If I do not get all the proper foods in daily that I need. I can tell if I even miss the time now because I've been doing it for so long.And I would say my emotions. If I think about what I can't do too much I dwell on it and start to future trip, which can tend to bum anyone out. So as long as I think of ways I can help others I'm ok. Then of course my faith in a higher power (for me it's God). Praying and reading help out a lot. But I think everyone has days that are not great and others that are great. At least we can choose right? :-)
Exercise Exercise Exercise!!!!! I have cerebellar ataxia but we don't know which kind yet. The best thing you can do is be in the best shape of your life. Eat very healthy and exercise every day to help your body compensate for your brain. Also, gluten ataxia is very real, so you should try going off gluten for at least 3-6 months (be very strict) to see if it helps you. Talk to your doctor before going gluten-free because they may want to test your blood for certain antibodies first. Good luck!
I got idiopathic CA too. Because all test results come back negative (I did not do genetic test, not covered by insurance). Saw my local neuro yesterday. Waste of time, sad to say.
Dear MN-Mira, I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause/symptoms 24/7) twelve years ago, and I echo what Jeannie and Runner had to say. The only thing I can add is a positive attitude, as that helps me physically and psychologically! seeing how there are no conventional treatments for ataxia, I find you have to be pro-active in your own care. Words I live by: if you don't use it you lose it! My best to you..., ;o)
I have CA too, I found this site helpful as some of the symptoms are weird and so I don't feel so alone.
I too have been diagnosed with idiopathic CA some 15 years ago although I am seeing a neurologist who is doing lots of test. You must exercise to keep your body going, physio helps and i take coq10 for energy.
I have CSA2 hereditary and I have problems with balance, speech (occ.) and writing/typing. I am currently going to physical therapy (that specializes in neurology NOT orthopedics), occupational therapy and speech therapy. I don't know if any of this will help but that have seen things that I and my doctor were not aware of. Any way you approach this is up to you but exercise and diet seem to help. There is no standard of treatment so your doctor can only treat the symptoms.
This sounds weird but your attitude seems to help you with how you approach this disease. It is progressive and incurable and no standard of treatment. It's hard but I know I have refused to give in and just let whatever is going to happen, happen. I will do whatever I can to fight this. Maybe someday someone will come up with a treatment or better yet a cure.
Well said, Kay!
Yeah,well said !! After 8 years of this condition I'm throwing all I can at it ...:-)
I to have idiopathic CA for some 15 years,my neurologist is now doing lots of blood tests to find a cause. I find the best medicine is a good healthy diet and to exercise each weak. Physio helps and I take coq10 each day for energy.