Hi all, Was wondering if anyone had any ideas for leg strengthing at home?
I was diagnosed with sca of unkown type in 2007 and had some problems 2 or 3 years before that. I don't actually think it has gotten much worse in the last 3 or 4 years but I think any "worsening" is actually weaker leg muscles. I have been using dumbells to help build up my arms which had started to waste and this helped a lot so hopefully I can do the same with my legs.
my husband used to cycle a lot and now uses his bike on a turbo (on his good days). I can see how much he has to work at keeping his walking up, he's very slow and wobbly now but I'm sure the continued exercise is keeping him active for longer. Hope you find something that works for you :)
You can find a lot of exercises on YouTube if you have internet access
http://www.thebalancemanual.com/ecourse/a1.html Someone shared this link sometime back. It has some good sitting exercises. I have saved them weekly. The problem for me is implementing a regular exercise progam on my own.
The PT had me high step around the house on the rollator with weights on my ankles--3 lbs on each leg proved best for me. He also had me do some other leg exercises sitting and also standing holding the rollator and then walk around the house with normal steps (using the rollator, of course) He also had me do some arm exercises holding dumbbell type weights but you seem to have this under control. Made me stand while doing some to work on balance, but these have to be done differently when doing them alone. I also ride the stationary bike for 10 or 15 mins some days at the senior citizen center when we go for lunch, Like I say, it is hard for me to exercise on my own. Daughter #3 says I should make appointment each day with myself to exercise. lol
Has you doctor ordered PT or OT for you? They might have to cite a fall for this to happen.
Thanks for your reply, I too used to cycle a lot and when it got too dangerous to use the bike I bought a good exerise bike which I use daily
krissy said:
my husband used to cycle a lot and now uses his bike on a turbo (on his good days). I can see how much he has to work at keeping his walking up, he's very slow and wobbly now but I'm sure the continued exercise is keeping him active for longer. Hope you find something that works for you :)
I am back at the gym purely to get stronger. I have noticed already after 4 sessions that I can know get up from a chair without pushing up with my hands. I mainly do squats at the gym, whilst holding onto something or someone. Pretend you are going to sit down but just as you reach the chair you use your leg muscles to push yourself back up. I practise this at home as well with a chair behind me in-case I fall. I enjoy it immensely as I am doing something constructive towards beating this rotten thing!!!
Martin,
I donot understand when a doctor diagnose SCA with no number? To me the doctor is guessing it is a SCA. SCA mutations are very rare Vitamin deficiency are more common and they often show the same symptoms.
There is a special blood test for nutrient deficiencies if you are interested.
Me neither Steve, I have had lots of blood tests and several MRI scans done which shows the Cerebelum is definetley atrophying. The neurologist I see in London specialises in Ataxia and is very sure it is SCA unfortunatley...
Martin,
I have cerebellar atrophy from prolonged thiamine deficiency. I took the special blood test the results said I have thiamine deficiency. It has been over 18 months since my treatment with no new symptoms and the symptoms I had improved.
Here is a article by PubMed a US medical library.
Thanks Steve, I will get a blood test for that just to make sure.
Much appreciated, best wishes.
Martin,
If you were a heavy drinker of alcohol this could cause thiamine deficiency because alcohol blocks the absorption of thiamine.
Martin Oxley said:
Thanks Steve, I will get a blood test for that just to make sure.
Much appreciated, best wishes.
Steve I only drank a lot when I was in my teens, but did smoke lots of dope from 1991 to 2000. Christ hope it wasn't self inflicted....
Martin,
How is your diet? You need 1.4 mg a day of thiamine for normal maintenance. If you donot get this amount it takes a few days to become deficient and your cerebellum get inflamed and get lesions cell death. Vitamin B12 deficiency long term also could cause brain damage.
Martin,
You have to get a thiamine RBC blood test a regular serum blood test might not show your problem. It only takes a few days of heavy drinking to get thiamine deficiency. Once you get it it doesn't go away without treatment it gets worse to beriberi to Wernicke's Encephalopathy to korsakoff syndrome. Most alcoholics get this disease. Some of the symptoms are unsteady gait when walking balance problems slurring choking etc.
Martin,
Please show the article on thiamine deficiency and the cerebellum to your doctor next time you see him. If you have this disease there is a treatment that will stop the progression and some improvements in the symptoms you have. If you have this disease I can tell you the info for treatment.
Martin,
Here is a article by Livestronge that drug abuse does cause vitamin deficiency.
http://www.livestrong.com/article/397521-drug-abuse-vitamin-deficie...
Hi
years ago i was given is exercise for my knee try two bags of sugar or any other weighit in a tidied up pair of tights based on your ankle and move leg up and down. Try heavier weihts over time.
we're also in London with an Ataxia specialist at Queens. I'd be interested to know if your specialist lets you have a blood test and if so what they tested for. I suspect different countries will be prepared to offer different levels of testing. I think it would be very useful to find out if there are nutrient deficiencies, even with a genetic SCA2. My husband has improved in mood levels and also no illness this winter since taking a fruit/veg/berry nutrient, it's shown us how important food is with all this.
Thanks.
Martin Oxley said:
Thanks Steve, I will get a blood test for that just to make sure.
Much appreciated, best wishes.
Martin,
When you see your doctor tell him you suspect you have Wernicke's Encephalopathy. Because of your cerebellar atrophy and you were a heavy drinker of alcohol before. Tell him you would like to be treated. The treatment is safe it consist of 500 mg thiamine IV morning and night another 250 IM at midnight for 3 days and one 250 mg IM Thursday Friday Saturday one 250 mg IM a week until no more improvements. The IM can be self injected outside of thigh about 6 inches to 8 inches from your knee. This should stop your progression it stopped mine at 71 years old you should respond better because of your age.