Hello everyone,
I wanted to see if anyone has trouble standing up or getting up after bending or kneeling down?
When I kneel or bend down, it’s hard for me to get back up, but I can do it.
I have noticed it getting to be a little more difficult lately.
I have also noticed that my legs seem weaker that they used to.
Having Ataxia sucks
Please let me know if you have been experiencing similar difficulties, and does this mean that my Ataxia is progressing?
I really don’t want to end up in a wheel chair
Thanks for reading my post, and please respond to me.
Unfortunately, what you’re experiencing is “normal” for us. I don’t know how old you are but the best advice I could give you is to make sure that you exercise your legs now! I go to a gym 3-4 times a week and I make sure that I do leg presses and cardio as part of my workout routine. I think because of this exercise that I still have 100% use of my arms and legs. Like the old expression, “use it or lose it.”
EDIT: Incidentally, I am 72 years old and developed this stupid Ataxia when I was 21.
Good for you Mike. However, I think that if you can do more it wouldn’t hurt. Can you do any treadmill? I’m talking walking not running - balance issues? I also think that a proper workout should include some sort of weight [resistance] strength training as well. Naturally, you must start slow and progress from there. Go as far as your body will let you and then back-down a little so you’re comfortable and safe.
I was looking forward to a professional sports career if it worked out. Although a lot of luck is needed also. Nevertheless, I have always been active all my life so if that tells you something, then so be.
I experience what you posted about. Just want you to know that although we might have arrived on different ships, we’re all in the same boat. Good luck buddy and keep coming back here because you never know and we DO understand.
This was my introductory post. Maybe something there will resonate with you.
yOU ARE THE FIRST ataxia person, (no idea how you found it out, is yours hereditary?)What I wanna say hats off! for showing everybody, who has it, it is POSSIBLE to live with it, till your 70s…My paternal grandma (inherited hers from her pa), started developing symptoms after my father was born, at 21. 51 years (in her case) and had a few falls and incontinence problems…She never exercised. Lost all her muscle power, so where she fell, she stayed…Not the most glamorous 3 years of her life, but UNDIAGNOSED and unhelped, could do for her much more…No idea if she shook…became completely DEPENDENT on my pa…The way she walked was fine, only when she bent, she often lost balance. And knowing what’s going on, she got so spooked, she NEVER investigated ANY FURTHER. It was partially her uneducated background, but also FEAR…The worst she could have done, STARTED DRINKING ALCOHOL.wasn’t well and made herself EVEN worse, developed full blown depression, alcoholism…My late father (cancer) was the same, lucky he was not thrown up from the police force, turned up a few times NOT COMPLETELY SOBER on duty. Had treatment for alcoholism and the most terrifying thing for my ma was being in possession of gun( not to her knowledge) BUT NO AMMUNITION, as you may have guessed, I do NOT originate from Britain (ex communist country of central Europe), where carrying guns was normal…for a bog standard policeman.
EXERCISE, EXERCISE AND EXERCISE, I cannot repeat enough. Keeping the healthy muscle tone is the right trick…and if other probs, like swallowing difficulties, exercise the neck muscles, if speech going, search for a speech therapy…Always work on it! as far as it allows you.
Exercise is the answer…We live in a maisonette, the staircase, till I’ll be able to climb them, when NOT will push for a bungalow…Haven’t exercise safely, holding the banister for a week when on hols, everything on one level…my legs shook like a leaf…I wondered why? I haven’t done my strengthening of my thighs exercise.
Somebody mentioned treadmill.Found the motion weird and was still without ataxia. I mean it was not fully blown one…If safe enough and your balance allow using one, use it.apparently a safety harness with it. I prefer body core exercises on the exercise mat…
Squats, and individual legs, like lunches.
I have to be careful, when bending to adjust correctly and NOT FALL, I struggle with stiffness, as typing a lot on pc…Brought on by colder weather and one position for longer…
I 'm glad you mentioned stiffness in the legs regarding colder temps and sitting for a long time. I experience the same things; I thought it was just me.
EDIT: My Ataxia is sporadic not hereditary. No one else in my family has it. Aren’t I lucky!!!
I 'm glad you mentioned stiffness in the legs regarding colder temps and sitting for a long time. I experience the same things; I thought it was just me.
EDIT: My Ataxia is sporadic not hereditary. No one else in my family has it. Aren’t I lucky!!!
Like previous answers, I too have same symptoms and difficulties. I am 76 in November so expect some deterioration but apart from cerebellar ataxia, I am very fit. I have Personal Trainer come to my home for 1 hr once a week. Use an indoor bike and nintendo wiifit to exercise every day and 2 hour tai chi class twice a week.
I still cant get up though.
HI MIke.
I am a 72 year old and yes gradually it has got more difficult with kneeling or sitting for a while especially when you are sitting in a lower chair or sofa. I go to the gym 2/3/times a week and use a stationary bike for about 12 minutes and/or a treadmill for 5/10 minutes plus situps and stretching and weights(arm curls)I have been doing yoga for 8 years and have recently started doing aqua aerobics for 30 minutes in the pool at the complex where we live. I was diagnosed about 8 years ago and my walking and balance has gradually got worse. Exercise ,diet and cutting out wine etc has helped to keep mobile but use it or lose it seems to be the message. I agree Ataxia is a buggar but be positive and do what you can.
My leg symptoms follow yours completely. My neurologist sends me to PT to learn exercises for the legs and more for the core. She says I can build these muscles, that they will continue to "waste, but I can stay ahead of the curve. I wear knee pads under my pants every day too. With the pads on they don’t hurt (they hurt less).
Jubie,you are very smart. I didn’t do that and fell and broke my leg. It took a week in the hospital, surgery, more time in rehab, outpatient PT and lots of pain to be functional. A year and a half later, it still hurts sometimes. I wish I would have done what you Do!
For me, getting up seems to be harder than getting down on the floor. I find that getting on my knees when trying to get up gives me a better chance of getting up even though I still need to hold on to something to steady me.
Yes, my legs are certainly getting weaker, although some days are better than others. It’s noticeable when getting up from the floor, as I now always have to use my arms as an aid. It’s especially noticeable on going up stairs. Or walking, carrying something heavy. Walking a lot of stairs doesn’t seem to make it better, so I’m not sure about exercising.
I’m 73 and started with Ataxia at age 67. It has progressed a lot over the years. I even played some limited golf for the first 5 years but my legs kept getting weaker even with regular exercise and bending over and getting up is harder. I don’t even try to go to my knees without help getting up. I would day that the last 3 years there has been a lot of deterioration both in strength and balance and although I go to fitness 4-5 times per week, its a slow but steady leak and yes, I’m worried about not being able to walk before longs, I try to keep fit as much as possible.
