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Moderator: gloria

Hi all,
after 10+ years with OT I've had a new, and not so positive thought. Is muscle deteoriation another important side effect?

As standing is near impossible for more than seconds – working out in an upright position is very hard. A lot of leg-work is done from a standing position, especially those that really work the important muscle groups in legs and butt. I’ve always been walking a lot, but that doesn’t really strengthen the muscles – just keep them going.

Now I’m starting to feel tired a lot quicker and my worry is that these important muscle-groups are starting to deteriorate due to lack of use! I’ll try to find ways to work these muscles more, using a rowing-machine, stretchy rubberbands and things and really try to do more of this, as I am starting to worry.. I wonder if the reason we OT’ers sometimes ends up in wheelchairs might be due to muscle atrophy rather than increased tremors?

Just an idea that occurred that I have not seen we have discussed - or have we?

Anyone else with similar thoughts?
I think your surmising about muscle atrophy is probably valid. All the years of climbing mountains (Whites in New Hampshire) and hiking to all the Appalachian Mountain Huts in those mountains, and all the years bike riding (sometimes 30 or so miles a trip) hasn't helped my at all. Fatigue, to me, is as bad as the tremors.
Hi, I was just discussing this topic yesterday. I feel as though the muscles in my legs work extra hard to keep me upright when the tremors kick in. This, in and of itself, is a workout. I also still workout at the gym. So in some ways, I feel as though my legs are working out twice as much and maybe it's too much for my legs. I'm not sure what the answer is. I can tell that the muscles in my legs are weak when I introduce a new exercise. Yet how can this be when they are working so hard to keep me standing? I never really understood this phenomenon. I'm sure I'm misunderstanding something about the role our leg muscles play in this mystifying disorder. If someone can explain it to me, that would be great!
Hello all,
This is an important topic I feel. I have had OT for about 16 yrs and am finding recently that after I exercise, my tremors are much worse and it takes me awhile to recover. Previously I also needed some recovery time but this has increased.

I have been thinking I should see a physio person to see if I could get specific exercises to strengthen leg muscles rather than just do my regular exercises for stretching etc. (mainly pilates on the floor)

I will do this and report back once I meet with this physio person.

Hi Peggy. Good to hear from you again. It’s been a long time since the last Omaha Research. I’ve been going to the gym for the last 10 years walking on the treadmill, machine leg lifts and leg pulls. My calve muscles were huge. I was fine as long as I was active in the gym. But going to the grocery store afterwards, I was a mess standing at checkout with extreme tremors from the previous workout.

My husband has been ill the last 10 months and we haven’t been able to go to the gym. I try to walk outside every day and do my stretch exercises. I’ve lost a lot of leg muscle. The point that I’m saying is that I don’t notice any difference in my leg strength from doing extreme leg exercises compared to just walking daily.

I’ve had OT for 15 years and have learned to cope with it in the many ways that others have done. When I push myself too far the tremors over power me. I have a stool on wheels in the kitchen and bathroom. Shower stool in the shower. I avoid crowds but use a cane for balance. I have a walking stick for my daily walks when I have to stop at road crossings. I carry my stick while walking because I do walk fast, almost run. But I can’t stop to talk to a neighbor when I get home. My tremors are too bad to stand still.

So activity does strengthen my legs but tremors are worse immediately following. Give me some rest time and I’m good to go again. Crazy isn’t it.

Hi Nancy,
So good to hear from you. We have had lots of great discussions in the past.

This was very helpful information you passed on. I am still going to meet with a physio person as I think exercise is important for many reasons but I will keep my expectations re helping my OT to a lower standard.

Thank you for replying,

I have had OT for over fifteen years and just in the past year it was gotten much more noticeable. I am very active for my age (70) and being lucky enough to live in Hawaii, I get to surf on a daily basis. Luckily, because I am moving on the surfboard, the OT does not effect my ability to surf. However, the moment I come in and have to walk up the beach, I really feel it wanting to kick in, unless I keep moving. This past few months my wife and I took a cruise and for two weeks we walked every day at the various stops. In between we worked out in the gym, and I concentrated on leg exercises. I have come to the conclusion, that the passage of time, is beginning to take it's effects on me, regardless of the fact I have OT. However, that weakening of leg muscles, would be a lot worse if I wasn't working out. So, I feel exercise helps strengthen the legs, which helps in the progressiveness of the ill effects of OT. So, I would encourage anyone with an exercise program to maintain it and like everything else, just accept the fact we've got OT and anything that keeps it at bay, even in the littlest amounts, is worth it!
Surfpro, I agree with everything you have to say, that weakening of leg muscles would be a lot worse if we didn’t work out. I am 77 and hope to get back to the gym soon for the leg exercises. Yes, I too think that it definitly helps in the progressiveness of OT. I like your positive attitude. We have OT and we have to live with it.

Not everyone has the opportunity to go to a gym. So keep walking. But for those that aren’t able to stand, continue with the stretches while sitting or in bed.

Hello to Surfpro,
I LOVE your attitude! It was so good to read your message and your concentration on what you CAN do!

Surfing is pretty amazing and not something I would ever try but my daughter just loves surfing but can't get to do it as often as she would like as she lives in Canada also, where I live.

I also was very interested to hear you went on a cruise and did a lot of walking, which we can do but I wondered how the crowds were when you disembarked as a friend just returned from a cruise in Europe and the pictures showed large crowds when they disembarked which would not be easy to handle with OT. Do you use an aid for situations like this?

Lastly, would you ever consider coming over to Omaha the next time we have research, which may be in 2021?
You would be a wonderful motivational speaker and we all would benefit from and the Dr.'s doing the research might be interested to see how you handle it also.

Thank you again for this and look forward to hearing back from you,

Hello everyone,
I suffered the symptoms of OT for over ten years until I was finally diagnosed in 2009. At that time I was able to walk unaided and stand for twenty minutes before the tremors kicked in. Today I cannot walk unaided at all and the tremors start after two to three minutes. As you can imagine, the muscles in my legs have deteriorated. I should mention I am 84 years old and age is probably a factor as is the fact that I have pronounced scoliosis. I had a spinal nerve block recently to try to reduce chronic pain. At the same time I started using a pedal exerciser. I can only manage ten minutes a day. The pain has eased at the site of the block but the tremors in my legs have become much worse and I have terrible cramping in my legs. I can only hope that the leg pain is a sign that the muscles are responding to the exercise. The other issue is that I am concerned that I may be asked to increase the dose of Lyrica that I have been taking for years. I don't like Lyrica as it causes weight gain and I can't afford to put too much of a strain on my back. Does anyone have a suggestion for an alternative medication ?
I’ve had OT for over 25 years. I’m 81 now. I used to walk for exercise when the Ot first started. The condition got worse., I began using a cane and walked. I now use a rollator (a walker with wheels) and I no longer walk for exercise. However, for about eight years, I have been going to a gym at least twice a week. I walked on the treadmill and also used a NuStep machine which strengthens the legs while you sit. I had to give up the treadmill because I’m short and the effort to haul myself onto the machine was too much and I was afraid I’d fall. I've increased my workout on the NuStep to one hour and have the machine set at the hardest level. My leg muscles are strong. I don’t do any other activity after the gym because my legs are tired. However, by the next day, I feel an improvement. I can stand longer and use a cane or walker less around my house. Unfortunately, I’m going to have to stay away from the gym for the time being..I live in Seattle and we’re facing a growing problem with the Coronavirus.
Hello Marla,
Thank you for taking time to share this info. I am definitely going to look into going back to the gym and trying this machine, just for strengthening leg muscles. I have been doing some leg strengthening exercises I got from physio.

Important to keep active that is for sure!

Am I the only one who is frustrated and ANGRY that, because OT is a "rare" condition, there must be an extreme lack of research regarding it? I feel that it's because there must not be any profit in it for the pharmaceutical companies. If a FAMOUS person had it, the treatment would miraculously become available. Are there any clinical trials out there?? (My husband was hospitalized recently and underwent surgery. When he came home, I became his sole care giver during his postop recovery period. There were some medical issues to contend with after his discharge. The fatigue and stress made the OT explode into uncontrollable tremors. So what should we do? Hide in a glass cage [sitting, of course] to reduce the tremors?) I guess I'm just feeling sorry for myself, but I had to let off steam. Thank you.
Hi everyone and many thanks for all the input on muscles and how we cope.

Regarding cruises: I have felt that the vibration in the ship from the engines actually resonates with my own tremors. On the huge cruiseships between Sweden and Finland I CAN STAND!! First time I went, I wept with joy. It's still the same, that steady small vibration onboard, helps me to stand. So the tremor is ok, but instead my balance is now shot to h*ll, so I'm still wobbly. :wink:

Muscles, sitting very much (also being working from home due to Corona) I feel my legs getting weaker but also "shorter" as the tendons are not streached as they should. So, I'm trying to do more yoga, gymnastics and things to help.
(I'm soon 60, had OT diagnosed 11 years ago). Amazingly golfing still works - so I'm looking forward to that season.

So - back to the rowing machine and yoga mat! take care!
the golfnut from Sweden
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