I was wondering, if ya’all had physical therapy, what sort of exercises/stretches
did they do for you? Did they seem to know how to help with our disease?
Reason why I ask is mine only did one routine and didn’t do anything else.
Thank You
Paula,
I’ve had various PT over the years. But the one that did me the most good was water therapy. The place had an under water treadmill! It was great! My balance routine there clearly helped me as well. I regained the most feeling that I ever have with CIDP while I was receiving water therapy. I hope this helps! God Bless!!!
Melissa
Once i was feeling better I exercised to build up the strength in my legs.I have a work out machine at home called the "total gym" it really helped build my muscle strength
I have a great P.T. who specializes in nerve recovery treatment. I see him for approx. 8 visits every 3-4 months. He reviews / tests my current status, abilities and gives me a variety of exercises. Working on balance and strength. The key is finding the balance of learning exercises you 'll be successful accomplishing while being sufficiently difficult to expand your abilities! Keep looking for that special P.T.! I found mine at the Out Patient clinic associated with the local hospital. Previously I saw one whose specialty was sports recovery. The current specialty is working better for me and visiting him every 3 months helps renew the focus I need to attain continuing recovery!
I did 6 months the first year. The first time they worked me too hard and I went backwards. I went to a different rehab that knew more about cidp. We went way more slowly as to not fatigue the nerves causing additional problems. It made all the difference. For my gait the routine was heel to toe while narrowing the space between my legs until I was able to walk, and one foot in front of the other. I also do it backward. I still do that routine regularly. They did all the muscle groups. All routines, nothing different. I stopped when I knew there was nothing new they could teach me and I was able to do the routines on my own. I started swimming which is the best for me. I also do modified tai chi and yoga. They seem to cover all the bases.
I had pt last year that did great stretching and gave me exercises
to do at home. At the gym it was side stepping over foam hump to
improve my gait I suppose(made me extremely tired) and kicking a small
weighted medicine ball then ride bike for ten minutes.
My cidp was so extreme that when the first time he stretched me, he said
he can “feel” how much scar tissue my nerves have by the way how
limited my range of motion is, after the first few times I could hardly
walk! My balance is a lot better, although I still have moments of
falling into the wall.
I still walk with a cane and although don’t shuffle anymore, my gait is
still off due to the fact that I can’t bend my knees like you would normally
do when walking and cannot walk heel to toe(I can’t walk on toes, they hurt
too much).
I do ankle and feet exercises on my own, he had me do the
alphabet exercises for my ankle that did nothing for me at all.
I’m only allowed 20 visits a year.
I’m currently looking for pt that understands cidp, offers a little
more in the exercise routine and maybe aquatic therapy.
Am I asking too much or just want too much too soon?
At first, I had to hold onto the bars to walk with one foot in front of the other ( heel in front of toe) and backward. What I meant before is that I had to learn heel to toe because my feet would slap on the ground toes first. I had to fix that as well. Our park district offers aquatic exercises. I just swam at the park pool. I think swimming would be the best to strengthen the knee. I went to the park district for tai chi and yoga too. I did classes but it was impossible trying to keep up so after getting the initial postures down I use the free classes offered on cable tv. Be careful not to overdue. I did and still go backward when I push past my limits. I measure what my limits are by pain and fatigue levels after exercising. I remember the when my progress felt like I was taking 100 steps forward and 99 back. It was exhausting. I think that was because I was always trying to do too much. Massage helps too.
Another ‘trick’ to share re exercise and overall function… I bought a pedometer and wear it everyday, though I don’t check it everyday. I check the number of step to see how active I have been. Heck, going into a store and using a cart for balance still provides safe exercise. It’s just another way to keep my up ‘mileage’. If I feel esp. tired at the end of the day, it’s a handy tool to see how much I have done. I also sometimes just check my watch and time how long I walk the neighborhood. It’s a good way to track my activity level. Every little bit helps! ; > ))
I do use the carts in the store, cannot walk the neighborhood as it’s snowing here
now, I walk the house when needed and try to help with chores
before getting scolded by the kids(still have major sensory loss
In both hands and feet and can’t hold on to things).
I get tired very fast. I’m going to change my lyrica to neurontin
due to the swelling of hands and feet and going to ween off the baclofen
due to it doesn’t work.