Just a day with this progressive SCA1

Having a day of nasty balance and I feel weak today…
Ummmmm…no! What to do?

When i have enough time for that, i take a bath. After creaming me i put on some cozy home-clothes, and go to bed, - till i am feeling enough energiy and power again to stand up.The stress with many obligations this would be the hell.

I'm not having a great day either so my plan for the rest of it is to park myself on the couch with some nice munchies and put on a DVD I really want to watch (War Horse). I'm guessing my exhaustion today is the result of overdoing yesterday since I felt so good. Bit of a vicious cycle going here, I think.

Look after yourself Monte.



I have SCA1 too. You can have very different day, some good and some bad. When you can, try to keep as active and your mind busy. I use an exercise bike. Try to find a hobby that you can still do. I like messing about with clay and making stuff. I can only do it sometimes, but it really helps. I also find rests and afternoon sleeps work well. Hope things have improved : )

I agree with everyone! As everyday I don't feel like doing much. Really I just take care of my 3 kids and my 2 grandchildren. Well I guess that is pretty much. But don't feel guilty for taking time off. Ataxia is hard wok!

I went to eat at my favorite Diner today and kept dropping my fork.My mother had hereditary ataxia and i remember when she had a hard time reaching out for her food and dropped her utensils and getting upset,now i know how she felt.In her last years before she past i told her to use her hands for eating and don't worry about what others thought,i hope i have many years before i do as i told her.My balance is okay today,i'm not stressing about anything and stress is one thing that makes my balance off.Hang in there Monte,i hope you feel better.:)

I agree - go with the flow - if you have commitments that cannot be cancelled just bite the bullet - otherwise do what you can .

I like to lay on the bed with a hypnotherapy download on MP3 or some wii fit exercising.

I do like to be alone so if my husband is home, I use another room to him.

I dont like to go out but often wonder, if I lived in hot climate, maybe I would enjoy that.

Take care, Patsy x

Yesterday evening i felt so tired, but this had no really explanation, because i had not done much on this day, and it was just 8.30 pm. On such occasions i am often not able to go to bed, because before sleeping i would have to fulfill some minor duties. Without much hope for sucess, i tried my structuring method,which helps me to come into action during the day: First i take a piece of paper and a pen. Then i do a shortl line with this pen as a positive feedback for me having done at least anything; having started. Then i arranged some food rests on the eating table where i was sitting. After that - second line. The more small actions i performed,the more my power joined me. For a wonder - after only a few minutes i was not so tired any more, and able to do my necessary jobs. Finally also to box my medicaments for the next week. I know now,- this is a potential for me. Wishing also comparable success-ideas to you,dear Monte (comparable in the positivity of results - not the method, which could seem quite strange for the "bystanders".

Nice evening,


If I do too much one day, I pay BIG-TIME the next! I just go with it and try to rest. FYI, I saw my neurologist yesterday and he advised me to be as active (safely) as possible. He said studies have shown that doing exercises for strength and balance for an hour (continuously) each day causes ones brain to make new neural pathways. He said the trick is to keep challenging yourself (for example: stand on one foot for as many seconds as possible and then the other. Increase the time, as you can). I do this balance exercise at a ledge between my family room and kitchen in case I lose my balance I can grab on. Best to you...;o)

My problem is that i do not realize this in time: When i do too much. I can sometimes do very much for days, - too much, and then have to pay for it - so as you say, dear Rose. i always want to be so healthy that i can do more, that i could work. But for which my power is sufficient actually is not more then the daily routine in the household. Tea cooking, doing the laundry. perhaps going tho the farmacy and shopping for fruits around the corner.But what do i do instead? I am reading these ataxia-studies, running to the university library, going to extra doctors. (Actually i am sick, almost nothing is possible outside of the house.AND- we have got much snow in Vienna actually! It s so silent on the streets.


Hi Monte - there is the choice to push it to the limit - to which I would try avoid doing personally.

Of course, you can always exercise as preventative, but some days are bad, and maybe you can brainstorm some ideas on how you can be kind to yourself.

I really need to get some things done today, but with the revisitation of the flu, it’s simply not going to happen.

Know that you’re not alone in that some days are better than others; and on those off-days, I hope that you choose to do some things that make your soul smile.

I have days like that too. One day fine, the next , I look like a drunk duck walking around ( or attempting too ). What's "fun" ( NOT ) is to be fine, but tired, and go take a nap, then get up and have a heck of a time trying to stay on my own two feet. Never have figured out why sometimes when I nap, I wake up 10 times worse than when I went to sleep. I've noticed I get tired easy and want to sleep during the day, so I end up getting about a 3 hour nap, wake up, feel refreshed, then get tired later ( around midnight) go to bed and can't sleep but about 4 hours. I figure I might be able to sleep if I didn't nap during the day, but it gets to the point I'm so exhausted during the day , there's no way to stay awake... vicious cycle.

That sounds like me, Princessoffire! This ataxia thing is truly a mystery! One day I don't feel too bad, and the next isn't very good, whether I do too much or not. I don't know how I worked with this for three years after I was diagnosed. Of course, my symptoms weren't as bad as they are now, as I've had ataxia for 10 years (maybe longer, as I recall some odd things happening before I was "officially" diagnosed ). I retired from my job 6 1/2 years ago. My symptoms have progressed (slowly) over the years. I too feel worse after waking up, but have no idea why. ;o)

I didn't know when I signed up it would put the princessoffire as my name. I'm gonna try to change it ( that's my email lol ) but yall can call me Kat !

I think it worked LOL

:) Margarete