Help..idiopathic cerebellar ataxia

I was diagnosed in 2008 with idiopathic cerebellar ataxia. I seem to have it bad. My speech is slurred, I cant write, choke a lot, supra pubis catheter,'constipated, wheelchair bound.
Could anyone suggest anything? Something that will help.

God I wish. Jerry

I don't think there is anything that will help ataxia as a whole. We just have to adapt. However, some say diet helps make one feel better overall, and keep doing what you can seems to be a common mantra here: Use it or lose it. As far as constipaption, my gp has recommended Senna Plus. It is otc and helps some. I take 2 tablets every night along with eating prunes and trying to get more fiber everywhere I can. Eating a lot of nut esp cashews seems to help.

Have you tried a gluten free diet? I read somewhere that 40% of idiopathic ataxia can be caused by gluten sensitivity

Same here Joe.We all seem to be different.Mine is rapid too.Just been to see the shrink about the negative feelings and she wasn't surprised.You are not alone.I'm fed up with trying to analyse it-I have similar probs too but not many seem to have the tremors as well.Feel` a wreck.

Dear Joe Hammed, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (idiopathic, unknown cause). MIne has progressed, but not as quickly as yours (everyone is different), as I use a quad cane and a rollator when I go for walks. My doctor told me to use Miralax for constipation, which helps. Also I exercise for strength and balance and try to eat as healthy as possible. I do slur my speech, have s difficulty writing/printing and cough/ choke when eating or drinking. A speech pathologist told me to drop my chin towards chest when drinking (take small sips). When eating, take small bites and chew throughly. Even if you're in a wheelchair you can still exercise. Google "exercises to do while in a wheelchair". I wish I had better suggestions for you and all with ataxia, as ataxia is frustrating and hugely challenging! Try to think outside the box, be positive and do what you can, although difficult! My best to you... ;o)

Thank you all for your caring comments
rose said:

Dear Joe Hammed, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (idiopathic, unknown cause). MIne has progressed, but not as quickly as yours (everyone is different), as I use a quad cane and a rollator when I go for walks. My doctor told me to use Miralax for constipation, which helps. Also I exercise for strength and balance and try to eat as healthy as possible. I do slur my speech, have s difficulty writing/printing and cough/ choke when eating or drinking. A speech pathologist told me to drop my chin towards chest when drinking (take small sips). When eating, take small bites and chew throughly. Even if you’re in a wheelchair you can still exercise. Google “exercises to do while in a wheelchair”. I wish I had better suggestions for you and all with ataxia, as ataxia is frustrating and hugely challenging! Try to think outside the box, be positive and do what you can, although difficult! My best to you… ;o)

A gluten-free Paleo diet. Meditation with Roy Masterson's work, You Can Heal Yourself, Gary YOung Essential Oils with the reference directory, deep breathing, balance exercises, a good support system. Hope this helps.

Well said, Judita! ;o)

Thanks Rose! Just years if reading and studying about how to evolve to a better level.

I too am mostly home bound with celiac disease and gluten ataxia. Listening to books really entertains me, takes my mind off of my condition; and takes me places that I can no longer go to. I also try to live life staying in the moment, which is easier said than done. Both a great gift, as well as curse as humans is our ability to consider the future. After difficult days, it is easy to project that we will feel this way every day for the rest of our lives; or consider how much worse our condition may get. Living in the moment has helped my peace of mind, as I try to make the best of each day and not think much about the future.

Best wishes to you

..I tell you Joe.I've taken up on-line 'Sudoku' !..It's great because my writing is woe-ful,lol..

..the time just passes by which is some thing we Ataxians have plenty of :-(

..I have all your symptoms and say to myself that smoothe water doesn't make a sailor..

..take care Joe..Ozzy..