The Orthostatic Tremor Forum (archive)

Hallo all -

I've not been here for some time. In truth, I am despairing of anything happening here in the UK; even Dr Peter Bain admits that OT is being 'sidelined' in the UK. So what chance do we have currently?

I now have trouble walking. This has happened quite suddenly; it's becoming painful to walk, the pain centred around and inside my knees. I imagine this is because my stance is now so bad, trying to cope with standing, that it's put pressure on all the wrong places. I'd welcome comments on this from others, and how they are dealing with it.

I will not go down the drug route until I absolutely have to; my wife has been poisoned (quite seriously) by statin drugs, and I am rapidly losing all faith in prescription drugs, not just because of my living wife's abreaction, but also because wrongly prescribed drugs contributed in a big way to my late wife's death.

Does anyone have experience, good or bad, of osteopaths/chiropractors?

Best to all


Richard Senior

Richard: It was so good to hear from you because you were working very hard to get things going for OT in the UK and we had not heard any news about your project and I was getting concerned. Nonetheless, I would like to address your present condition about your inability to walk very well because you have pain around and in your knees. I doubt that OT is the cause of the pain , I would check with an orthopedist. I suffer with arthritic knees and before I had the pain I could cope better with the walking. However, I do find walking is the only way that we can work the leg muscles normally otherwise with OT they are receiving the wrong nerve/muscle message and fail. However, pain of any sort will effect tremors thus our legs feel worse. Our stance and stooped posture could come in part from the OT because I believe that our leg and resulting back muscles can not work normally, become weakened and supporting our body lessens. So my therapy is to continue walking on a regular basis at a good pace and riding an incumbent bike or in your case your regular bike.
We now have a good number of members from the UK and I hope that they have contacted you from this website. How is your list doing? Dr. Bain’s comment seems to be the truth but I do see that things are getting better as our larger medical institutions are recognizing OT and many are recommending our website to help OT individuals. Nonetheless, we have a long way to go. My very best from this side of the pond and keep on posting, Gloria

Thanks for your prompt reply, Gloria. I can't help feeling that because my muscles are fighting to hold me together when I'm standing still I am actually doing damage elsewhere. You suggest an orthopedist; have you any experience of manipulation?

Richard

Hi Richard,
Haven't been on the forum too much lately as I am busy doing other things to help our OT community as you will read about.
Couldn't help but think as I read Gloria's comments - isn't she amazing the way she still takes time to answer people on the forum - I am sure this must be a daily task for her and we are sure lucky to have such dedication.

I hope you can get some help also through a physiotherapist possibly or orthopedist as Gloria suggests.

Also, did you ever have a meeting in the U.K.? I would be anxious to hear about that. We are still waiting to hear from Dr. Russotto about the research he is hoping to do in Nebraska and then I will set up another meeting for OT people to attend in conjunction with the research.

Good luck with your issues - keep us informed pls.

Sincerely
Peggy

Hi Richard and all
I too was starting to have difficulty walking. I always seemed to have pain around my knees and calves. I also found myself walking bent over a lot of the time because of the pain in my hips and lower back. This usually happened when I had to try and stand longer than I wanted or did a lot of leaning. In the morning when I got up I felt like I was 90 years old.....all hunched over..... and I am only 59. My 90 year old mother-in-law could walk better than me.
Last May I decided I didn't want to continue on like this and taking medications was not an option as I don't like all the side effects. One of our local gyms was advertising a year long medical weight loss/life style change program and I decided to sign up. I need to lose quite a bit of weight plus I figured the exercise might do me some good. Boy......has it ever!!!
I had to have a whole battery of tests and meet with my doctor, their doctor, a physiotherapist, dietician, kinesiologist, and fitness consultant......all of whom were intrigued with my OT and quite interested being the first person they had ever seen with it. I had a special program made up for me by the kinesiologist. I started out only doing about 20 minutes of cardio on a treadmill....which I should say was very scary and I also did some on the recumbunt bike which was lot easier. I also have a 45 minute workout I do seated on a bench using stretch bands and weights. This is to build up my leg, arm and core strength. I have been working out at least 3 times a week from the middle of May and I really can notice a difference. I am up to about 50 minutes of cardio along with my strength training. I can now get up in the morning with no pain and walk upright, my legs are definitely a lot stronger and don't hurt if I have to stand for a time, and I mentally feel so much better. I am taking it slow and steady and am slowly losing weight as well. It is not a diet program but a total lifestyle change and you have to live with it for the rest of your life. I find that if I go longer than 2 days without exercise I start to hurt again so it is a good motivation right now to continue.
I know this won't cure my tremor but I decided I might as well do all I can to feel good and strengthen my body so I can handle it better.
Sorry this is such a long post but I wanted to share with you what is working for me. I will keep you all posted as to my progress.
Chris :)

Chris: It sounds like you are taking control of your OT and not letting it control you. It is the only way one can live with this monster and you will be more independent as a result. Thanks for posting a good course to take. Much continued success, Gloria

More on this: I went to an osteopath today, who confirmed that my thigh and leg muscles are in some considerable trouble as a result of using them wrongly to try to stand. She treated them, and it HURT!!

She said she could not offer to treat me for OT, because she doesn't understand the condition (who does?!) . Honest of her. However she suggested I look at Chinese medecine; does anyone have any experience of this?

One interesting question she asked (and I have asked this on my UK group as well):- Does anyone with OT link the onset with any illness? Or does anyone recall being put on a course of drugs, and then develop OT?

Best


Richard