I also suffer from a neuromuscular weakness of the lungs - I was sent to pulmonary rehab - there I found out that I could use the Nu Step while sitting as soon as I was to go on the tread mill in less than 3 mins my bp dropped drastically and my heart rate soared. So as long as I sit and exercise I am okay.
Chi gong, or qi gong is a good work out for reducing stress, but works out the leg muscles at the same time. I find doing some form of exercise daily helps with my tremors, and weakness. Some of the cable tv packages offer on-demand fitness options, which is a good way to try out different exercises at different levels.
I have been using a total gym that someone gave me, its great! other than that I think yoga and pilates would be really good, I have a pilates dvd, I will dig it out. I have an exercise bike and I use that too... I wear compression hose to keep my bp up and that has really helped my exercise level. Just remember slow and steady!! I find that if I think I am feeling really good and push myself, I pay for it, by being sick for two or three days after. So pace yourself. Glad you found us!! :)
I have been taking yoga-lates. it's yoga and pilates. This class is for almost all levels. I have been doing well on it. I am not able to do everything (about 85% completion and more the more I do it). It helps with flexibility and cardio, without totally straining your body. I used to be able to walk three miles in 45 min. now I can't walk a flight of stairs. Changing my diet to more fruits and veggies, and cutting down on fried foods help. Tumeric helps for the inflammation. Good luck. I have been looking for a sight with unique people like us.
I love the idea of making a recumbent bike! Thanks jem201041 for that idea. Also like the idea of exercises where no standing is required and thanks Detours211for the link. I am going to check out that site. Marie
I like these leg exercises - http://www.sld.cu/galerias/pdf/sitios/rehabilitacion/leg-str.pdf
No standing required.
I either use a recumbent bike or go to the pool and walk laps in the shallow end. You can buy cheap bike pedals at walmart that just sit on the ground and you can make any chair into a recumbent bike. I think mine cost about $20
My son's doctors had him water jogging, of course he had to be supervised. It seemed to help a lot and he liked it. He hasn't done it since we closed our pool for season and his symptoms began getting worse again. Not sure if it is just because he is not water jogging though. We really need to take him to an indoor community pool or the YMCA.
We are also going to get him the recumbant exercise bike.
My electrophysilogist suggested a recumbant exercise bike. Ur sitting and leaned back which has your legs up a.little which should help with OI etc. I haven't tried it as can't afford it yet but makes sense. And u don't have far to.fall if.u.do.have syncope.
NASA studied patients with dysautonomia when they came up with the exercise program for astronauts because our symptoms mimic what it is like to go in weightless space. They recommend using a rowing type exercise or one of those low slung type bikes and mixing in resistance exercises. The main idea is to do these sitting not standing. As I remember they mention aerobics but since my heart rate doesn't rise (PAF) I haven't figured out how I would do that. I also am hesitant to try rowing as I have had thoracic outlet syndrome and rowing would make that worse.
I like the idea of gentle stretching of yoga... Resistance exercises could be done sitting on the floor with one of those elastic bands. I think if I could cycle laying on my back and using just my legs that might work. Marie