I have tried a faucet which infuses H2o into my water from Japan, supposed to give more energy, tried therapy by balancing with special discs infused with energy (similar to crystals), physical therapy for 2 years, treadmill, recumbent bike, yoga, weekly massage especially neck and legs, b12 shots, walking regularly with my Access Active Rollator, keeping a positive attitude.
The massage, exercise and attitude seem to be the most helpful. Got to keep moving!
Regular exercise is the what I do; mostly walking and swimming. I notice a difference when I don't get exercise so I know it is helping. Haven't tried massage - interesting.
I do exercise five days a week. I use a treadmill as walking outside is too tricky. Also strength training with weights and resistance bands three days a week. Turns out, exercise is a great antidote to fatigue.
The most impactful thing I've done is change my diet. I eat whole foods, nothing processed. Lots of fresh vegetables and NO gluten. I focus on an anti-inflammatory diet. Inflammation is the cause of most diseases.
Massage is too painful. I wish we still had a hot-tub.
These habits work for me. We all need to find what works for us.
Take care!
I found your response very helpful. I just ordered a Nitro Euro Rollator which can be used on all terrains. It won't be shipped for 2 weeks. I also recently purchased a recumbent bike but have been too weak to use it yet. I had a bad episode of episodic ataxia for 4 days that lasted 4 hrs. each, and caused severe weakness, headache, paresthesias all over. I am waiting to hear from University of Michigan Neurologist's office - I saw Dr. Zachary London there back in August 2011, and am trying to get a followup appt. to get referred to Ataxia Center there.
I agree exercise would be good. My PCP is in the process of ordering PT for me at Mary Free Bed Hospital - where they rehabilitate patients with neurological problems/injuries. It's just a waiting process now. I agree that a positive attitude is the key. It's been hard for me to do lately, but I am definitely a positive person. With my recent Corneal Transplant /Zoster flareup/Upcoming August 13th Corneal Transplant on other eye, I'm having a difficult time staying positive. If I can get into University of Michigan Ataxia Center I think that will be helpful.
Thanks for responding,
Nancy J
Nancy,
You are facing a lot of challenges! I found PT helpful especially when I could take what I learned and continue it at home. I'm glad to hear you'll be seeing PT specialist who know neurological issues. Big difference between that and most PT folks.
Take care!
I have a double whammy, ataxia and arthritis of the hips. I eat a whole food diet, everyday I do stretch yoga in bed before my shower, I park my car a little further away from work so its just long enough not to over do it, at work I walk up and downs stairs do some balance exercises and a few physio exercises for my arms. After work I do 20-30 mins of flow yoga plus 10 mins on the cross trainer. I've never felt so fit and completely off my pain relief for the last 7 months. My walking is still dodgey but my rule is use it or lose it
I haven't changed my diet at all. (Maybe I should). I do follow an exercise regime. I cant tell if its useful or not. Probably it is, What can be bad?? My life will never be what it was. Attitude? Too focused on this saga. I feel best when sitting down and reading, Lying down is a real blessing (sleeping). New development? I feel quite rigid when I rise although it fades away in seconds. N
Sarah Millard said:
I have a double whammy, ataxia and arthritis of the hips. I eat a whole food diet, everyday I do stretch yoga in bed before my shower, I park my car a little further away from work so its just long enough not to over do it, at work I walk up and downs stairs do some balance exercises and a few physio exercises for my arms. After work I do 20-30 mins of flow yoga plus 10 mins on the cross trainer. I've never felt so fit and completely off my pain relief for the last 7 months. My walking is still dodgey but my rule is use it or lose it
Dear Suzi, I agree, as exercise is essential! I also have an Access Active Rollator and do pleasure walking outside regularly with it. I also have a treadmill I use when I can't walk outside. If I can hold on, I'm good to go...,ha! I (like Julie) also agree that diet is very important, whole foods, nothing processed! I enjoy massages, although don't get them as often as I'd like (will have to do something about that...,ha!). Last, by certainly not least is attitude, as we can't control having ataxia, we can control our attitude about it! Also, recently I finished aquatic therapy and LOVED it! I intend to do it on my own now. Keep moving the best you can! Thanks for posting, Suzi! ;o)