I was wondering what is the worst time of day - when your ataxia is really bad? Mine is when I wake up and have to try to walk to the bathroom, get my legs, feet, arms all in synch. I sit on the edge of the bed for a while to get my head on straight then try to walk downstairs for my coffee. The rest of my day I try to be as upright as possible. How about you??
I would say mine is just before bed when I'm really tired. After 8-9 sleep I do well!
I get progressively worse throughout the day. But right when I wake up (especially if I didn't sleep well) I need to kind of think for a moment to coordinate. But in the mornings if I get a good nights sleep I'm practically normal! But after a very long day, especially if I've had to walk a lot that day, I'm like a drunk sailor.
My balance is worse at night after a strenuous day. But writing is worse in the morning.
I'm the same when trying to get out of bed in the morning I also struggle when I get tired, I can get some good days when things are good and I can get about without walking aid, but Iv tried to be too smart and had a few falls
I also find I am worse at the end of the day. Or the middle, if I'm especially tired! Luckily, I can walk without a cane or wheelchair (I use a cane when I go out, but that is more so people see that I need special consideration) My handwriting is bad(and painful) all day.
I never thought about worst or best time of the day. I'm like most ataxians and am more alert and have energy in the morning. After 6pm I'm useless...Like another person I'm better after 8-9 hours of sleep.
Hi my name is Miles, i’ve been diagnosed some 15 years plus with idiopathic ataxia although I’m having blood tests and they think it may be SCA5. I feel most tired in the late afternoon/early evening however when I’m doing things (exercise, reading etc) this also contributes to my tiredness. In fact now doing anything for more than 10 or so minutes has the affect of me feeling tired. The answer is to pace yourself if possible.
Yup, mornings and when you’re exhausted
Delish, I can’t write anymore my handwriting is terrible
That is also the most difficult time of day for me.
Morning is the worst. although when I am very tired at night It starts get very difficult just before getting to bed.
Doesn't make any difference.All bad but mood better in evening.More positive in the evenings.Frustrated more by CA in the mornings.
Yes. That's me. I really dread getting up. I lie ther for awhile, then throw my legs to the side and let the body roll to a sitting position. There is no pain, but I know that I must think about what I am doing and where I am going. I wobble in to the bath room, take the morning antidepresent a thyroid pill, and a caffine jolt. I the sit for the am constitutional and when I leave I am "alright" -- not good but alright. Things go better then. No real problems, just a reluctance and a renewed knowledge that I must always concentrate on my activity. Nothing "just happens". ---Silky
I do worsen in the evening and go to bed around midnight, my walking then is at its worst and I can tell how tomorrow will be in my progression. My physical progression may have slowed up and seems like any progression may be in my brain function, memory and drunk like behavior. I think I can get by real good though if I can stand. when standing goes or if it goes it could be rough. I keep urinals around and in the van so I can deal with problems if the toilets are a distance away and I don't have a wheel chair handy.
I am tired and wobbly any time of day. There seems to be ño difference. It's bad, and getting worse. Tiredness does make some symptoms worse. I alsô have given up on writing except for a modified signature. My writing is so bad, Î can't even make out the scawl later
Dear Suzi, I'm at my worse in the morning, as I move very slowly. And if I over-do and am tired, I have a harder time too. Some days are a bit better then others, although I have my ataxia symptoms 24/7. ;o)
Same for me when I wake up I can barely walk. Also like most of you it is impossible to walk in the dark. My arms and legs are extremely painful in the morning. I have pain at other times but always in the morning.
Most painful time is when I wake.. tired but too uncomfortable to lie in.
However, when I struggle to my feet and lurch to the bathroom to 'perch' and sort myself out, I feel great and have to take care not to fall over with enthusiasm.
I exercise and do all the chores and then flake out. Listen to hypnotherapy which I have downloaded from Andrew Johnson
http://www.withandrewjohnson.com/pages/about-us
Then I do some computer work.. or other 'sitting down' things for rest of day.
If the weather is fine, we [husband and I] go for walk after my nap.
At 72 years of age, I really dont hanker to go out in the evening.
My ataxia is late onset and really sympathise with those of you who are young and need to get out in the evening.
xxx
My most painfull time of the day is also mornings.