Hi Members, I'm looking for some help and advice. I have sca 14 and with the last couple of years my walk and balance have slowly deteriorated. I am now at a stage where my Achilles tendons are making life difficult. When I wake in the mornings they are as stiff as anything and the pain is getting hard to handle. The pain continues up my calf muscles and I feel like a robot walking around. Is this happening to anyone else? I'm beginning to think it's the last stage before I lose my walk and it's very hard thinking about it. All day long they are painful and walking is down to a minimum, after 10 minutes the pain in my legs is excruciating. Has anyone any advice. Thanks Fran
I don’t know if this will help Ataxia related Achilles tightness and pain, but when I ran competitively, I learned two fail-safe preventive exercises to strengthen your Achilles tendon… First, before you walk, Fran, find a stair step-any will do- stand on the balls of your feet or toes-hold on to anything, if necessary, and slowly lower and hold and hang your heals down, not over-doing it at the beginning. Work up to 15 reps or whatever’s tolerable. Repeat after your walk. Second, as you lie in bed every night (or any time of day) lie flat on your stomach, relax head on pillow and hang your toes over the bottom of the mattress, heals facing up still on mattress… Then, push the mattress back and hold for a few seconds with your toes, being careful not to overdo, as above. You’ll start to look forward to these streching exercises. Hope this is helpful. Ellen
Hello there Fran the man,
I also have sca 14 and am crippled with it myself. My brother and sister also have the condition and are next to being in wheelchairs now.
Myself I have very little feeling in my left leg and tend to drag it a lot.
Mind yourself now love. Everyone is here for you.
Dollface
Ellen said:
I don't know if this will help Ataxia related Achilles tightness and pain, but when I ran competitively, I learned two fail-safe preventive exercises to strengthen your Achilles tendon.. First, before you walk, Fran, find a stair step-any will do- stand on the balls of your feet or toes-hold on to anything, if necessary, and slowly lower and hold and hang your heals down, not over-doing it at the beginning. Work up to 15 reps or whatever's tolerable. Repeat after your walk. Second, as you lie in bed every night (or any time of day) lie flat on your stomach, relax head on pillow and hang your toes over the bottom of the mattress, heals facing up still on mattress.. Then, push the mattress back and hold for a few seconds with your toes, being careful not to overdo, as above. You'll start to look forward to these streching exercises. Hope this is helpful. Ellen
Hi Ellen, I have tried all sorts of exercises for my Achilles and ankles. Nothing seems to be helping. My physio is using laser treatment on me at the moment but it is not helping. She is talking about strapping them up. I'll try anything if it eases the pain. Thanks
Hi Fran
E llen's advice sounds good. Have you seen a physio? If you are in the UK you can ask your GP to refer you. Leg pain is quite common for Ataxians. Tell your Neuro/GP about it. Exercises (I know duh) plus painkillers might well be the answer
xx
Sarah-Jane
Dollface said:
Hello there Fran the man,
I also have sca 14 and am crippled with it myself. My brother and sister also have the condition and are next to being in wheelchairs now.
Myself I have very little feeling in my left leg and tend to drag it a lot.
Mind yourself now love. Everyone is here for you.
Dollface
Hi Dollface, I find myself dragging my right leg more than my left but I'm using my scooter more than ever now but I would rather walk if I could. I don't think I could handle being in a wheelchair. I get embarrassed sometimes using the scooter when I see people in their 70's and 80's walking perfectly. I mean more power to them but I would like to be one of them. Thanks
Sarah-Jane Squire said:
Hi Fran
E llen's advice sounds good. Have you seen a physio? If you are in the UK you can ask your GP to refer you. Leg pain is quite common for Ataxians. Tell your Neuro/GP about it. Exercises (I know duh) plus painkillers might well be the answer
xx
Sarah-Jane
Hi Sarah-Jane, I am taking a good few meds including painkillers but not much help. Thanks
Hello Fran the man
I'm glad you're seeing a physio. As with most problems with ataxia, we need help on many fronts.
Never be embarrassed about using your scooter because you're "too young". Those older people you see walking obviously don't have our problem, but we do! We have to do what we do to keep mobile. I'm getting to the stage that I won't be able to drive soon, because of sight difficulties, so I'll be investing in a scooter. I need to be able to get out of the house sometimes! We didn't choose to have our problems. We were just lucky....:/
Hi Fran, I have SCA14 and it helps in the morning when you wake up tp curl your toes up towards your body. This helps with cramps. Also, check with your doctor about getting B12 shots. They help! Message me anytime if you want to swap stories on SCA14.
Hello,
I've got a gene mutation on the SCA14 gene too. Your story sounds familiar. My ataxia is progressing very slowly, but I do recognise this to a lesser extent. I hadn't connected the stiffness and pain in my calves with SCA14/ataxia though. Thanks, everybody, for your tips! Fran, hope you don't mind me following your thread.
In the Netherlands, SCA14 is very rare. Good to know there are more of 'us' in the world.
All the best,
Cristel
My husband, which has ataxia, does many exercises to keep his Achilles tendons stretched out. His mother, which also has ataxia,walks with that straight leg wobble walk. It is possible to keep from getting to that point by doing strengthening and stretching. I would suggest a trip to the physical therapist to let them tell you what to do and how to do it. Don't wait! The longer you wait the worse it will get. Just and FYI, a stationary bicycle will not help this tendon problem even though it is exercise. You need to do tendon specific exercises for your Achilles. Yes it will hurt when you start but it does get better.
Get your doctor to put you onto Bacuflen, used for all types of Neurological diseases for cramps and stiffness
Hi
U dont say how old u r? I have ataxia caused by mitochondrial disease. BUT disregarding causes and our age, I DONT advocate giving up and using w/chair all the time, but u need 2 rest yr muscles. fine line btwn keeping mobile and not overdoing it. ask the xperts, but at the end of day, it is u who has 2 live with ataxia
gypsy2091 said:
Hi Fran, I have SCA14 and it helps in the morning when you wake up tp curl your toes up towards your body. This helps with cramps. Also, check with your doctor about getting B12 shots. They help! Message me anytime if you want to swap stories on SCA14.
Hi G, I have tried everything. Stretches, curls, bending this way and that way but at the moment nothing seems to be working. I have more laser treatment this afternoon and I'll see what she says afterwards. She was talking about strapping the ankle. I'm not sure what she meant, maybe support. We'll see. Thanks
Hi Cristel, That's the problem here to. I was first in Ireland to be diagnosed with sca 14 and it is hard to find anyone that has the same. Every one that has a type of ataxia suffers in their own way. We are all different. But I don't know if this is part of my sca14. Some other Ataxians are having similar problems with their tendons so it must be a stage of ataxia. I suppose falling and stumbling around the place doesn't help when I'm twisting on my ankle. Thanks. It's nice to hear some one from the Netherlands, I worked their before and loved it. Everybody was just so nice.
hi fran,,
i have sca 4. i also have pain in my legs. i think most of us do. in the morning i sometime wakeup with my legs(calf/thigh) i found that when i went to the pool (indoor/heated) and walk laps for about an hour. to start off i only did half hour until i felt my legs starting to get stronger. after about a month i found my walking easier and i did not have so many moorings of pain. in the past 2 months i also have been taking magnesium tablets. my doctor told me that it will help. our condition affects our bone so if you can get vitamin D that will help our bone not crack or weaken...
i hope this will help
PEACE LOVE AND LIGHT
Adam