Balance Between Walking and Saving Energy - Muscular Dystrophy Message Board

Madalot · 08-21-2008, 11:22 AM

I was just curious how others handle and/or view this problem that I face.

I CAN still walk, but only in a limited fashion. I cannot walk any distance without becoming extremely weak and fatigued. When I went through the evaluation for my powerchair, I was only able to walk 420 feet before I had to stop and had rested at least 3 times during that 420 feet. I was also using a cane. The phyiscal therapist said it was NOT good.

But -- I find that if I spend too much time in my chair, I am so sore and stiff that I can barely walk at all. For example, we went to an amusement park on Monday and Tuesday and I spent both days in my powerchair. Tuesday night especially, when I went to get out of it at the end of the day, I could hardly move at all! I had taken a couple of breaks during the day where I got out of the chair and stretched, but it was still really bad at the end of the day.

I make a point of trying to walk when I'm home. I use walls, chairs, counters, etc., to brace myself and hold on as I go.

How do you know how to keep a good balance between walking enough to keep the muscle tone, but not overdoing it, but not underdoing it?

Does this make any sense?

michigani · 08-21-2008, 03:13 PM

Kathy, it makes COMPLETE sense! At least to me. I think you and I are almost exactly at the same stage. But of course I do not have wheels yet. I DID order a scooter, a Pride Victory 10. I'm anxious to get it. Actually about a week ago I went to watch my wife and daughter play mini-golf. Using my cane and my wife's arm I guess I walked about 400-500 feet. My legs were burning! I stopped halfway to rest for 30 seconds.

I want to walk all I can while I still can without getting hurt or wearing down muscle. I'd say people in our stage should walk around inside all we can (that doesn't really tire me out too bad), and a little outside each day. I worry NOW that I don't exercise enough, but what can you do when you're too weak to exercise!?!

When I'm sitting inside or outdoors in my directors chair I've told you about, I must stand and flex my legs every hour or so or I really feel weak and stiff. If I come home from a 3 hour car ride I can barely walk the 30 feet to the house and sometimes can't get in the door! Walking a bit every hour or so is imperative in my opinion.

PS - Looking forward to my scooter and hitting an amusement park as well (even if I can't ride the coasters anymore).

Mark

kew17 · 08-21-2008, 11:36 PM

Hi Guys!
I can appreciate this dilemma and just wanted to throw in my pennies. First, Congrats Mark, I'm so excited for you getting your wheels! I found it very hard to find that happy medium between being as active as I could without totally wearing myself down. The lack of mobility is what assists in the muscle breaking down. After a few extended hospital visits that landed me in bed for long periods, I'm now pretty much confined to the chair. I'm sure I would have ended up here anyway, but that got me here much quicker. That being said, I also say, take it easy on yourself and don't over do it. I have some respiratory and heart issues on top of the mobility to deal with. Getting the chair for me, helped me do so much more, because I could get around without wearing myself down. To expand on that, when I was walking, it took so much out of me because of my lung capacity. I hope you guys find your happy medium. You know your own bodies and what they can take and not take. On a similar note, I've been in my chair 6 years now. I just recently have had some skin breakdown on my thigh where I sit with the most pressure all day. It's been awfully hot and muggy lately which I know hasn't helped with that. I try to get up and down from the chair during the day several times, too, to stretch and relieve pressure. ( I just can't take steps anymore)

Anytime I have an outing, I pay for it the next 2+ days with muscle soreness and all around fatigue. Tonight was my son's "meet the teacher night" and we went out to dinner afterward. I can already feel the soreness coming on, so I know tomorrow will be a doosie! So, cheers to you my friends...I'm off to go take some Tylenol PM and call it a night.
Best wishes,
Kelley

dkbladez · 08-24-2008, 01:10 PM

Hey guys,
I too can feel your pain. I can still walk with my walker but it takes everything out of me. I try to walk but when it takes so much out of you, its hard to get motivated. I listen to my body and when I start to feel that tingly and warm feeling in my legs I know it is time to start moving or walking. I guess no one knows what is best, so I say do what's best for you.