Hi Marie - I just saw on "60 Minutes" last night that Autistic kids who cannot speak are using IPads. I know Autism isn't the issue, but the IPad might be worth looking into.
Marie Turner said:
I just furniture walk inside;cant walk outside.Can move so is balance thats the problem.Can just about talk but not fluently anymore.Would try anything to get speech back.Only two weeks into a gluten free diet so epecting results too early.Will persist with GF for a couple of months or more.Have an aggressive form of Cerebellar Ataxia of no known cause.Rapid deterioration but no automatic symptoms yet.Puzzled. Have had the main genetic tests.Neurologist doesnt know what has caused it.Dont want to know but would love to think I could do something.Not very good at acceptiing it when most of my old hobbies involved some sort of movement.Trying to be postive but it is hard.Loss of speech is the pits.Can cope with loss of movement better...
Thanks everyone for suggestions on gluten-free breads. And now I'm CONSIDERING dairy-free.
I think that my body is already going into shock just considering the thought of going dairy-free, too =)
Seriously, my current diet is made up of bread, oatmeal, sometimes pasta, spinach, bananas, oranges, cheese, milk, and eggs.
I know that there are some non-dairy cheeses and milk - but are there non-dairy eggs?
Jeannie Ball said:
I love coconut milk now! I don't have milk anymore. Sorry I thought that you let dairy go but now I see it was Marie's sis in law I see that now, but it's helping me out alot more than I though since I went dairy freet! :0) It took me two attempts but I finally have been doing it now for a few months and I can see a diffrence. Someone said dairy is like a gluten in the body so that's why I stoped it.
Thank you Butterfly! It really does help to know we aren't alone! I have to ask, what do you do for the nausea and constant motion sickness? This is something I struggle with because when you feel so sick all of the time it gets hard to relax and feel happy. I've been doing better the last month or so, but sometimes the nausea can get so bad. I used to take meclizine, but it doesn't really help if the symptoms are severe and I started getting some very bad jaw pain after taking it. I'm guessing a side effect? They also prescribed me valium for extreme attacks (2mg), but I'm afraid to take them because I don't want to become addicted to anything. I'm always looking for the 'feel good' fix-it that will make the nausea go away.
I don't have the spasticity problems, but I do get cramps and spasms every once in awhile. Usually at night. Thankfully I haven't had any really bad falls but I'm also very careful. Perhaps I'm too cautious sometimes, lol.
serenebutterfly said:
Hey MisCake2
I like yourself suffer with problems with vertigo and balance caused by a brainstem lesion, I really suffer with ataxia as a symptom due to the long-standing brain stem lesion.
My balance is awful, have constant dizziness and I have regular falls as well as frequent episodes of vertigo which is really intense. I find that it is especially bad if I am in a large building with high ceilings, being in them makes me feel very unwell. Like you, I find that I cannot handle too much stimulation - really loud noises, too much motion and so on really seem to affect me bringing the vertigo on or just making it much worse.
I also have something called spastic paraparesis which causes severe stiffness and weakness in the legs - so my legs constantly give way on me leading to a lot of falls and stumbles throughout the day!!
I often find myself thinking that I live with some really strange symptoms, which I suppose they are - even a social worker who runs a group I attend commented on not having seen some of the symptoms before in clients!!
So, know that you are not on your own and take care of yourself x
I felt nauseous with depression.I used to have to force myself to eat.It is not very pleasant but used to go away after 6.Although I have just found myself falling it is usually when I change direction too quickly.I must remember to do things slowly.I haven't had nausea with my ataxia but the room does swing round.It is something I think to do with the eye muscles working too slowly so it makes it difficult when you focus.
I don't have nausea, but I do have trouble with balance and dizziness. I wear progressive lenses in my glasses and sometimes it is hard to handle. There are times when my eyes can't adjust to the changes of progressive lenses. I just think my brain is too slow to make the adjustment quickly. I bought a pair of bifocals, and it really helped. Ahbee
I get bad nausea and headaches especially when I lie down to rest. Reading is incredibly hard for me and I usually stick to a screen because paper pages have too much movement to them and I lose track of where I am and or the words jump all over the place. I have days where I feel like ripping my own eyes out of my head because the information they give me is so wrong! and yes NAUSEATING!!! and painful and everything icky!! For example I can find and reach properly for something only if I look away and then grab it. If I look at it I miss bigger. So anything that involves eye guided movement is awful for me. For that same reason it's my eyes that slow my walking down. I'm faster if I look away from where I am going. Things are just out of sync in the eye/ body/ coordination world. ;_(
I learned a lot of things at the Rehabiliation Hospital and from my Vision TP and my Vestib retraining. Aside from all the daily VOR/Vision Neuro Vision exercises, plus general fitness exercises. Here are a few little things that help. SUPPORT in the way of arm rests and pillows so that I have extra proprioceptive contact and support. I am thinking of buying a race car seat to sit in when I need to read or write because that wrap around support helps me balance and anything that helps me balance increases my cog - gevity (length of time I can be smart) and stops my eyes from wonking out sooner. Using my dog for navigating in crowded areas or for days where long walking is going to be needed, again it extends the time before I exhaust mentally and physically. Pushing hard in therapy but adding comfort in real life. Like if I have to go to the bank I will fill out all of my slips ahead of time so that I don't have to try and balance and write while in a new or busy environment. But if I am doing therapy by exercising at home I may do something extra challenging like stand on my bosu and make myself juggle or catch a ball. I just mix it up a lot in hopes that I will continue to get better or at least not lose ground. :)
Lately I have been thinking about getting reevaluated and trying a new pair of prism glasses,... just waiting to have the funds as that whole vision rehabilitation can get really pricey.
Know what you mean about the reading.Knock the whole book on the floor and have difficulty with the pages.Have just a Kindle but havent used it yet as people have lent me books which I must read on a rainy day ha ha.
I see that this post is from awhile back but I had to respond as I share your most troublesome symptoms of poor balance, shaky vision, vertigo, migraines. I am certain that i have gluten ataxia although no firm diagnosis from the "experts". Periodic vertigo attacks were my initial symptom 15 years ago; which then progressed into a permanent sense of dizziness and poor balance which gets very bad when exposed to motion of any kind (TV, church, walking dog; car rides, grocery store, etc). I then started experiencing sudden falls, migraines and almost daily tension headaches. Happily, I have not had a migraine since shortly after I started a gluten free diet 4 months ago. I'm almost certain that the migraines and headaches resulted from the constant inflammation in my head; as i always had a real heavy head like a bad hangover. The headaches are better but still problematic on the gluten free diet.
When did your symptoms first start? what other symptoms do you experience? I am curious since I've seen very few members with problematic vertigo, vision and balance issues.