Have any of you had experience with physical therapy? Is it helpful?

I saw a physical therapist in the hospital, who gave me some exercises and suggested I find a PT who specializes in neurological problems.

My thinking is that any exercising I do will use up what strength I have, and make me worse and not better; but perhaps it would make me better in the long run? It's not going to do anything to enhance nerve-muscle communication, but if I had stronger muscles, maybe I could get more out of the communication that's there? I just don't know.

Abby

Abby thank you for this question. I had wanted to ask this and lost track of doing it.

The last neuro who was biased and was unwilling to look at how bad my breathing is pushed diet and rehab saying " even smart people cant necessarily rehab themselves." I dont know what the underlying text on that is as she was so dismissive of me overall. The diet and rehab were under her 'assumption' that my symptoms arent that bad so it must be Chronic Fatigue (tho that was ruled out by my pulmo).

I didnt bother to tell her that I did rehab myself once very well after the vitamin D was found. The truth that I know is that I am ill enough at this point that if I tried to go to a facility for rehab 2 times a week I would get worse as my body had not been able to tolerate that level of activity. I wouldnt mind working on MG rehab if I knew that was the focus and I wouldnt get worse from higher acitivty level.

I tried to go to a very close satalite facility for some pain rehab about 2 1/2 years ago and they wanted me twice a week. I tried to explain what that would do to me. Even when I did it myself back in 2006-07 I had to measure my success in minutes. I guess I would recommend that especailly for those who push themselves, have a history of that like me. I started on in a little park with a walking track that I knew was 1 mile if you walked it twice. This is where the minutes come in. AT firist I was so discourage by getting just down to the first curve and getting what I call 'spaghetti legs" meaning if you dont sit your body is gonna make you right here right now.

I look for ward to others experience. I have just been wondering about seated strenght training like using my bottled water as weights to crunch on couch. Dont know how this would apply to legs. Oh just remembered. A local station does a senior rehab segment that has a lot of seated stuff on sundays.

Annie59

Annie, I told the PT that a trip to the city (half an hour) for a therapy session would do me in--the trip itself, not even the session! It's true. If I have a doctor's appointment, it's all I get done that day.

I don't have to tell you about rationing energy! I jealously guard what energy I have. To get me into PT, they're going to have to convince me that this is an efficient way to spend my energy.

The physical therapist in the hospital was helpful in one way, though: he was the first practitioner I've seen who even tried to figure out which muscles, exactly, are cauing my tilting! He had some tentative suggestions, but he wasn't really sure.

Abby

I had replied to a simular post like this before.

We do not have the capacity to build muscle strength but we can stretch our muscles and remain flexible.

Get a simple pilates kit with 3 strength bands and video. Start with the litest band if you have to. Some days you may be able to use a heavier band and the next day you may have to go lighter. Some days you can do more reps and some days less. Doesn't matter.

Staying flexible is so important even if you are getting weeker.

I did go to a physical therapist for pilates but it's a hasle and takes extra energy to get out 3 times a week but she did get me started and I found I could do most of everything at home with bands.

Good luck;

Tony

I've had PT on a few occasions. When my muscles got so weak that they cramped up and then wouldn't stop (vicious cycle), PT helped a lot. It was more about them "kneading" out the kinks and using ultrasound on them. Some exercises are useful and I'm not equating that to "exercising." Exercises that keep your back/core muscles strong like sucking in your stomach muscles are very useful.

I certainly think an assessment from a physical therapist who truly understands MG is a great idea. It was invaluable to me. It has, for the most part, kept me from having recurring problems with certain areas.

I disagree, Tony, about doing some form of exercising. It all depends on how bad someone's MG is though. I personally love my Total Gym. I can rotate muscle groups, do fewer reps and not do it for very long. It targets muscle groups and doesn't overtax me. Therabands can do the same thing.

I do believe that any exercise routine should be done in consultation with your neurologist. My neurologist has a PT group in his clinic, so that works really well for me.

I hope you find something that is a good balance for you.

Annie

I have had sucess with the Pilates too. I can not do as many as they do on the video! But, I do what I can. It all depends on how I am. I know I will pay in one way, but need to build up what I can. They really pump the lymphatic system and the stretching really is nice. If I am able, I do them once a week until I know I need to stop.

I just had the physical therapist sent from my neuroligist this past fall. He really understood MG. He prescribed energy conservation. He said to just do what I am able. Knows it is not reasonble to give any amount of exercise to perform on any regular basis.

I asked a neurologist years ago, to send me to PT to work with someone to learn what is going on with my muscles. His evaluation of what was going on with my muscles helped alot! Especially for my sanity! But they did not understand MG (I was not diagnosed yet) and had me do some exercises with them and exercises in the pool. Well.....it didnt take long and I went down hill hard. The pool got to where the water felt so heavy I could not breathe. They had to pull me out. (I did not want the crane!) I was in bad shape for a few years after that. It was way too much.

I hope you get to work with a physical therapist. They show you what muscles are working, which ones are not and explain why you move or do things the way you do. I understand so much more. It helped with safety issues, ha!

Rationing energy......that is a good good phrase. I will use that if you dont mind. That is it. After reading I remembered my attempt at pool therapy several years before I went on mestinon. After the first visit in the hot therapy pool I crashed big time. The therapist was so so puzzled. She said she couldnt understand how I got worse.

I have done some calling around in years past for a PT that knows neuromuscular. I will have to try again. No luck at that time. It was strange in that none of them were willing to say they didnt really know. I know that likely came out of want to help anyway.

I know a lady back here that has a recumbant bike she likes. She said at first it was 3 minutes and that was that for sometime but now she is up to 15. I do wish I could afford equipment in my apartment. I like the bike idea and have always been interested in Pilates. Maybe sellling some old stuff will get me there someday.

Annie59

You could look up Pilates on Youtube. I had lent out mine, regretted it but found Winsor Pilates 20 min workout on youtube until mine was returned.

I think the pilates are easier to get away with because you lay down? The stretching is wonderful!

I have a very hard time walking. I can walk better if I bend forward.(bad for me tho) Well...ha..I can rollerblade when I am doing fair. You don't have to really use you legs much when you skate. Skating you lean forward. I had always skated. Was never able to get good at it and now it makes sense. I felt embarrassed about it til I saw Michael J Fox playing hockey! Ha, that was great. He can skate really well and fast. I am slow but I smile the whole time! ha! Makes me faster than a turtle!

I have a little trampoline I lightly bounce on. I found it at a garage sale for $5. Good for the lymphatic system. I can sit on it and bounce too.

I also have a exerciser (some call a chi-machine), that machine on the floor you put your ankles on. The mechanism moves back and forth and makes you do a serpentine with your spine. Really good for you if you are able to handle it.

I hope you find a bike Annie! You could always ask for one on craigslist. I can not ride a bike. If I do, my legs stop working totaly, limp, no feeling. That is weird. I miss riding, it really is fun.

What a thing to adjust to all the time. One day you can walk somewhere, maybe ride a bike or rollerblade. Then maybe the next it is hard to sit up. I really appreciated the input of the physical therapists. I do not feel bad saving up energy to be able to do somehting that will benefit.

I asked my Nuero for a referral to a PT once...he said he doubted my MG could handle it..."with any muscle repitition with or without resistance, your muscles become paralyzed"...but he gave me the referral to try it anyway. I called for the appt and found that the pt was no longer with the office I had been referred to...I took it as a sign. But...I did buy a treadmill, and on strong days, I am able to walk at my convenience and pace. It's nice to be able to jump on and get some kind of excersice without having to worry about the weather or time of day ect...I tend to be stronger at night for some reason. It hasn't gotten any use in the last 2 months...but even 10-15 makes me feel like I'm at least trying to maintain myself. Plus if I crash or need to rest, my bed is only a few steps away, and I always bring my meds and water with me. I watch Real houswives...lol!
Jess

AnnieB3

I don't think you read my post.

I exercise no less than 5 hrs. a week.

MG is described as alternating muscle strength. Pilates is exercise. You can do ten curls with 20 lbs. weights one day but maybe not the next and you have accomplished nothing.

Pilates gives you weight resistance just like those 20 lbs. weights but you pull the bands in differant positions that also stretches your muscles and gives you more mobility. (flexibility) And that helps us a lot.

I am 67 years old and I also use a book " Stretches for seniors".

I have back problems but neuro and my physical therapist told me there is no
exercise that will develope my core muscles to help relieve the pain. Period.

I can stretch those muscles but have no controll over developing them and nobody with MG can. But stretching that does help with my pain.

Other than pilates, yoga would be perfect for us if we could balance.

Tony