So glad to hear the positive in your thinking. Dancing is a great goal and yes definetely it is exercise. Music makes me happy. Gives me a little spring in my step. And I also love each day the lord gives us. Keep up with the fantastic attitude brenda.

please keep dancing its as good a form of excercise as ANY! i recoend a rock n roll dance called the twist it helps joints muscles.and.bowls also i recomend a good litre or two of soya milk this gives.good protine and being well hydrayed will help the bowles. also smoked salmon is good for same. i find a stimulant like a half glass of wine, or coffee and sugar or chocolate also pleasant ways to help you go works for me but best thing is keeping well hydrated which you can tell by the color of your wee lighter the better also best to hydrate in the morning to avoiding being disturbed at night of course i should say water is tje best to hydrate with but i preffer unsweetenef soya milk.

do lots of dancing its not just exvetcise for the body and mind and organs but also the soul and the men live a girl that can dance ;) hehe good luck with it all :)

I understand your frustration with muscles.I am having to learn to walk again and it is frustrating.

Some things are considered organs not muscle like the brain. My doc assured me that DM attacks only certain kinds of muscle tissue.
We all seem to have digestive issues to some degree. I also had very dry skin so I started drinking water all day. It took care of the constipation and helped with weight control. Dancing is great exercise and a fun way to stretch - you are smart to pick something you love to do. HUGS!

matisamd, I grew up on the twist and it works the body. My problem isn't with the stimulation to go it is with the muscles being too weak to go. I stay hydrated and in fact too hydrated at times. I haven't had a drink of wine or any other alcoholic beverage since being diagnosed and starting on all of these medications. I always intend to ask my doctors if I can drink alcohol, but forget. I can't wait to get totally off prednisone, which my neurologist told me will be soon, so that I can have a big juicy margarita.

The muscles that you have trouble with i would do light toning weightlifting you want to maintain not so much get bigger and exercise is anything that gets your heart-rate up to your target heart-rate for 30 mins. also you can ask a physical therapist

running some of us are very far from being able to do 30 minutes of anything much less get our heart rate up for 30 min. I get all out sweaty just folding 3 towels in the laundry. I am finding doing some exercise a tiny bit every few hours in the day helps me build my ability.
Brenda the twist would be really good for the core muscles. Just start slow and do maybe 3 or 4 minutes at a time a few times a day and see where that takes you... Sending you strength, shawna

Thank you Shawna. I am not up to lifting any type of weights. I have just recently noticed that I can carry my purse without any help. My arms are fine, it is my thighs that can't even support a sheet of paper and my neurologist said that is normal. I was cold the other night and put a comforter over my legs and had to take it off because it was too heavy. I am planning to attend an art festival this weekend. It will be the first event that I have attended since my hospital stay and I am hoping to be able to enjoy the entire event without any type of support to hold me up. I believe that with short breaks I can last for a few hours and take in the fresh air. If that goes well it is on to the Clearwater Jazz Festival which I missed last year.

Have a great time at the festival Brenda. Plan to rest when you can and take it easy. When I do something like that, I don't plan anything else that day. And I sit while the people I am with go look more. I just can't keep up. I hope you are able to go and enjoy it. I think it is good to try to keep up the things we enjoy.

As far as exercising 30 minutes...well that is nuts. I've been working out at the gym for almost 3 years now. I do the work out my PT gave me and I still can't do the bike for 30 minutes...well unless I don't mind crawling to the car. We people with muscle diseases have to figure out the way to exercise where we aren't overdoing it and ending up in bed for several days to recover. I agree with Shawna that dancing for even a few minutes is good. Then after a week or two, see if you can do another minute. Another thing my PT suggested was to go to the pool and just walk in the water. She warned to be careful though because it is easy to do too much and won't know it while you are in the water.

As far as bowels, they are muscular so doing what you can to keep them going is good. I have the very opposite issue. I think it is medication related but things go through me very quickly. It is very frustrating.

For your legs, they do have blanket holders that some people use with different leg issues. Maybe it is the trick? Here is an example that you might be able to create yourself. I've seen some in medical device catalogs but it gives you the idea. https://thebedcradle.com/

i was drinki.g a litre of vodka 3 ties a week a year back of course anything i say is just my experience and.anytbing you do is uour choice but apart from feeling terrible and swelling you shouldnt have a problen with a half glass of wine. of all the drigs i have been on only ones i was told i shouldnt drink on eere blood thinners.and even then i had mug of wine ;) buts acting as a laxative which makes the muscle spasm so coffee sugar prunr juice chillis etc do this too. yea i have learnt alot about the body in pssdef 2 plus years lost 8 stone then gained a stone built up muscle improved my diet. if your as weak as i was doing a tiny amount of any excrrcise will wipe you out only thing to do is be ready to lie down for a 32 hours until your muscles build up of course your myositos has to be under control so you can build muscle and you dont need 30 mins of cardio but it is a good aim what you want is all about how you feel its.good to push a little but dont over do it. thete are tricks.i now use 1.hard as.you can fast as you builds muscle eas scientically proven 30 seconds on a excercise bike going as hard as you can 3 times a day 3 times a week was shown to be very effective.for nprmal healthy people the other is hard and slow if you were lifting weights youd eant somthing you could just lift about 8 times before you couldnt do more and youd lift it as slow as you could. thr last two are info if you understand ehat the best ways are you can adapt your them to your self! info is power if you understand how to use it ;) personally doing anythi.g you enjoy is easily the best thing to.do so keep d AZ ncing have a half glass of wi.e on a weekend and. do an exyra dance! i use to just wriggle when i was bef bound move in any way as best i could its all gonna help good luck all :)

sry about spelling i use a phone its now 2am i just finished a litre of prune juice with one detour finally its off to bed ;) oh do also you could do core excercises lower back and abbs if your lieing down is easy this also can help you go and help pushing muscles. pilates is a core system. oh and nearly forgot get a vibrating pillow for lower back another trick to help move things i found also lift your feet up when on the loo with a box etc its closer to a natireal squat which helps. omg i shouldnt say but a litre of prune juice works so well hehe take care :) i am not typi.g this while on the loo hajahaha.

lexisgirl, you know exactly what I am saying. I love water aerobics and even though I get in the pool, gulf and all sources of water, I do not know how to swim, but that is about to change. I contacted a person who is going to start teaching me on April 1st. I am so looking forward to it. I looked at the blanket holder and that is what I need. Thank you

Brenda, I think dancing is a wonderful form of exercise. I often exercise that way, because it is fun. I turn on one of the cable music channels and dance. Because of the PM I no longer can stay in rhythm, but at least I'm moving. So, dance away, and enjoy yourself while benefitting from the exercise. Also, best wishes to you in your upcoming swimming lessons.

Brenda that is wonderful that you found a place to learn to swim. Remember more often shorter lessons may be needed to accommodate our pension for exhausting the muscles!!! Just like Lexi said. I am so happy for you both, water is my friend!

I also am a fan of the newer blankets that are feather weight. The fluffy ones made of recycled plastic's. Target, Marshals, and TJ-Maxx usually have them inexpensively. Sometimes just a throw blanket up around my body and neck/head make me feel warm. I too have the leg pain with heavy blankets. I made a beautiful bed set with upholstery fabric i loved and never could use it it was just too heavy...

My best to you both, Shawna