I have not posted any update over a year. I actually have not experiance any progressive syptoms. I wonder why me. Although I still have my balance off It actually seems not as bad as it was lastyear. that weird. my speech is not slurred as much only bvwhen I get nervous or angry it really triggered. I know ive been told it will get worse but so far it has not. My handwriting is even better its not all the way but I notice my beautiful handwriting coming back especially when I concentrate. I am grateful I have not been diagnosed with a much serious ataxia. I have always had good memory and its still good. . Thank all of you because I actually felt so alone when I first was told I had this.
I know what you mean.. I fall about all over the place indoors, in my comfort zone, but very rarely on the floor... I have extreme difficulty in getting up from the floor even though physio showed me that I CAN.
My speech doesnt slur but goes very quiet and often I am slow in forming sentences!!
However, I can do crosswords and puzzles, knit and crochet too so nothing wrong with that part of my brain.
I run a local support group and feel very lucky that at 72 years I am still able to get about with my 4-wheel rollator.
It was explained to me that I probably had this CA since birth but no deterioration in cerebellum .... just my ability to cope with it in later years. It became noticeable in my late 50's.
Like you I find this group very comforting. x
You are lucky and thank god. Family support is important too. Emotional support n strengthening muscles. My speech I feel has slurred more this year n handwriting is not that clear but same. I use frame at home to walk but wheel chair outside as get tired easily. My speech therapist which I now see every 6 months since I know the strategies they taught. Speak slowly but loudly n I use metronome on phone set at 120 so I try n speak clearly n breakdown Kong words in my practice with newspaper
Thank you for some positive news.
I pray the rest of us are so blessed.
I have been diagnosed with ataxia. My support from family is not there. I had a terrible fall and injured my cerebellum and now my speech, coordination, walking, everything is affected. Can anyone suggest any hints on diet, foods to avoid. Any help would be appreciated,
Since your ataxia is the result of a brain injury, it should not progress any further. Ask your doctor about it. I suppose you went to rehab after your accident and underwent some therapy.
In my case, my ataxia is the result of brain damage by the stroke. I relearned to walk and use my left side, but I do have residual problems, such as vision field cut, intention tremors etc…,not to mention the wobbly gait and extreme fatigue and very poor fine motor skills on the left.
In my case, no mention was ever made about diet. You should eat healthy anyway and avoid alcohol which could further destroy your cerebellum. Some people say that gluten affect their ataxia.
However, exercise is very important. Staying active is a must. The less I do, the wobblier I get, so I push myself, because it is a fact that" if you don’t use it, you lose it…"
Best wishes to you. Hang in there.
Nakina,thanks for sharing your good news! I am happy for you!
Dear Nakina, Wonderful to hear! I hope your ataxia conrtinues to get better and better!...,;o)
Hi Miking. Great n thank God you are recovering but do be careful. Rgds jacob
Should read as Nakina
I'm the same,Nakina.Seems like the effort we all should make to slow the progression..ie: diet,exercise,mind strategies games,puzzels..And a new feeling I've found !..Happiness ! so I've got new things such as a new Computer,TV,clothes and going out more,enjoying life..also found some love and affection too..does work !!
Speech and hand/leg control has actualy improved...
Thanks for sucha 'positive' post .. Ozzy
Sounds great Ozzie. Keep going! so nice to hear good news!
Great post Nakina! Congrats! I agree with you. My ataxia also has improved. I never followed what the Dr's said about it getting worse. Mentally I think it can take it's toll if you believe that. Then the body follows! I really believe it comes from my foods and life style change! It's about what I CAN do not what I can't that I choose to focus on! :-) Keep going forward! :-)
I am so pleased for you that your ataxia isn't getting worse. Keep up the good attitude.
I was diagnosed with CA in 2013, and had many symptoms for over a year and a half, then got much better. Just last month I was able to go on hikes. Just in a short period of time, I am where I was when this first started. I can no longer drive, etc., at this time. However, I am hopeful.
I pray that your health stay in a steady state of well being.
Dear Israel, I am so happy for you! Gives all of us with ataxia a bit of hope that our ataxia may not progress, and even possibly may improve! There's always hope...,thanks for sharing and my best to you! ;o)
I'm glad your symptoms seem to have levelled...this also gives me hope for my partner in time to come. =)