I have sca7, Anyone else with this disease finding it harder and harder to form words? It’s getting to the point where i dont talk at all and keep friends at a distance. Actually now I have no friends…anyway anyone have similar issues?
I do not know my type but I do have some problems forming words. I think I change during the day depending on my spasms. Words like Volvo I end up saying vovo, I seem to talk like I am retarded sometimes. It seems like every thing I am able to do is affected in some way. I try different things when alone and I do seem to pronounce better if I am singing, and that does not mean I can sing, up until last year I had trouble walking but I could still run, just not very far. Seeing, swallowing, smelling is all affected. Jerry
Well at least you can still run i can barely walk now as well as my sight going and etc. But I noticed its getting harder and harder to talk now. It went from mumbling to not even being able to say the words on my mind.
Yesterday, a friend rang me and talked for almost one and a half hours. It was lovely to hear from her but well before she rang off I found my mind wandering and noticed my recall of the conversation was poor
These days, intense conversation is exhausting, for me it comes under the heading of ‘multitasking’ I stumble over words, and often what I want to say is on the tip of my tongue but it comes out as gobbledegook
This has led to me losing contact with people, not because of their impatience but more because I feel as though I’m ‘holding them back’
What I find strange is, ‘putting pen to paper’ is much easier. Possibly because there’s more time to assimilate thoughts and no need for quick fire repartee xB
I completely understand this. I find tltexting and writing to be a lot easier than speaking. My speech is horrible.
My speech sucks, too. I think I am perfectly clear, but others do not understand me. I am left handed and my left hand does not work very well, so I can’t write. Practice with my right hand hasn’t worked. Typing is done wth my right index finger. I am slow and inaccurate. I hate being so input/output limited.
I was diagnosed with cerebral ataxia a little over 3 years ago and have daily balance issues and slurred speech. I have to concentrate before I say something, and am still asked to repeat myself, sometimes can be a bit frustrating. My handwriting is atrocious, I have my wife fill out any handwritten forms. I am not allowed to drive anymore either. I have taken physical and speech therapy which seemed to help. Getting out of the house as often as possible is therapy in itself. I do walk with a cane though but doesn’t bother me that much. So I know how you feel just hang in there and take in one day at a time.
I also had slurred speech issues until I started seeing an acupuncturist for scalp acupuncture. My family is amazed on the difference. I am a kindergarten teacher, so clear speech is almost everything. My tremors have decreased, but I am aware of them. I am walking better, but I still tire at the end of the day.
I am pleasantly surprised on how well it’s working.
‘Scalp Acupuncture’ helpful with ataxia symptoms. I was intrigued, so as usual I immediately googled
This really comes under the heading of Complimentary Therapy and obviously there’s some value in trying the treatment. But it has to be said that as with all medications and therapies it’s likely that individual response may vary enormously.
There are examples on YouTube and information can be found on www.healingtherapies.info and www.scalpacupuncture.org
I find talking harder than it was so I too avoid socializing–something I have been told not to do.
But I can’t understand the logic of that attitude, BTW, despite it all, I try to read aloud 5 newspaper articles every day.Its not always a success but like everything ataxia related, the more you practice, the more can do.So even if u r alone, talk to yourself or read aloud.I also find singing to be easier BTW I dislike this site. Very confusing… Cant find my old acquaintances… the ataxia/UK site seems better, easier. xxN
Ataxia affects your muscles, therefore your facial muscles (tongue, cheeks, lips, etc.) The words form normally in your head, but don’t come out that way. Friends are a whole other issue. They must be cultivated and educated. The question is, are they abandoning you, or are you abandoning them?
This morning, I went to collect new glasses. The Optician had persuaded me to try a new approach to deal with my double vision, leaving out the prism, and having an opaque lens instead I’m just setting the scene
I wasn’t optimistic but was prepared to give it a go. The combination of a flare up of ataxia symptoms, and trying on glasses that appeared to make things worse, left me feeling anxious and virtually unintelligible I knew what was wrong with the glasses, and that I needed the prism put back but …
Generally, my speech is fairly fluent but when there’s a flareup of symptoms, words form in my head, then slurring sets in and speech is disjointed. My husband has had years of experience coping with my eye problems but he added fuel to the fire by questioning whether I did in fact need a prism, and suggested drawing a line down the lens instead
Words eventually failed me xB
In my case, I’ll never be sure whether it’s my SCA affecting my speech or my French accent hi! hi!
I’d use the French accent as an excuse, I bet it sounds cute too xB
He he! Oui…
I wish everybody was as open minded as you though.