You're not alone. Yes, I recently got a wheelchair, but no, I don't want to use it. The struggle I have is with knowing how much to use the wheelchair, and when to get along the best I can without it.
We need to keep using our legs, but when they feel like jello, what are supposed to do? I frequently get that exhaustion that is totally overwhelming and wipes me out for the rest of that day and most of the next day too.
And of course, there is the old pride. I used to run marathons and ski off of cornices like a crazy person, and I don't want to use a wheelchair. But now, how else am I going to do the grocery shopping?
I am dx CIS, and yes, I have days where my legs feel very weak. Arms too. I also have run a marathon and long distances in the past, so this was one of the things that first alarmed me.
I'm not running as much anymore (maybe 3 miles a few times a week) but I TRY to do something with my legs each day - walk, ride a bike etc.
Have you tried using a pool to walk- then you don't have to worry about falling down and you're getting your exercise.
I recently read a great article in Neurology Now , May/June 2010, about walk therapy on treadmills for people who have suffered a neuro assault. Here's a quote from the article:
"The consistent repetetive motion of walking on a treadmill helps the brain "rewire" itself, developing new connections to compensate for the damaged ones."
Here are also ten tips they listed to get you moving:
1.Use a walker or grocery cart (helps practice walking patterns and keeps you moving forward while being supported)
2. Walk to the beat of music - helps with timing of steps and consistency in the timing aspect of the walking pattern
3. Walk in a swimming pool.
4. Watch your shadow when walking - this can show where you're wasting energy
5. Rock in a rocking chair-use alternate legs to push
6. Shift your balance while safely holding on to a countertop - legs shoulder width apart-shift hips and trunks together to one side until you feel most of the body weight on one leg. Then reverse hip and trunk to other leg - continue shifting at a continuous pace.
7. Walk around the table - using table as needed to support- goal is to slide hand lightly on surface withouth slowing, hesitating or stopping the movement of your hand
8. Set small goals then keep expanding them.
9. Be safe - learn how to get up off the floor by yourself
10. Get emotional support. (this is a great place for that!)
Clinically isolate syndrome- bascially - first MS attack that docs have seen with test results that lean strongly to MS - but there is a criteria (McDonald criteria) that docs use to dx and I haven't met criteria yet. So it's called CIS - for now - until other attacks or more lesions appear. So I'm on disease modifying meds (REBIF) to keep that from happening as long as possible.
I am sorry to bring up the "no-no" but the truth is what MS decides to take, it takes. You can push and push and push but when it is time...for many of us...the wheelchair awaits our arrival. If anyone ANYONE never wanted to use one it was me. I had a major breakdown in WAlmart's parking lot the night I found I HAD to use one.
I had a major relapse 2 years ago which gave me jelly legs so bad I could barely stand and needed help just to get out of a chair. This has left me with exactly what you are describing.
I can walk a short distance but then need to rest and each time I do that during a day the distance I can walk gets less. Standing still is much worse though and I have to keep this to a minimum.
I understand this is quite common in MS. I have had to give in and occasionally use a wheelchair or mobility scooter but it took some time and lots of tears to give in and do so. However, when I did my independence grew and I was able to do things (like shopping) that I hadn't been able to do since that relapse.
Best advice is to keep as strong as you can within your limits. My physio told me that if you have MS your muscles tire at 4 times the speed of someone who doesn't so take care.
I can walk but get tried and then the balance begins to go wonky. When I know I have to walk for any great distance, I take my balance poles (the extendable poles used by hikers.) I sit when I can.
I'm not sure if anyone else has an associated problem, but trying to stand from sitting on a low stool, couch or bench is not a very graceful. I have spasticity in my legs, but when I want to stand up from a low sitting position I can't seem to get the right muscles to do the right thing at the right time. I think it was to do with my other proprioception issues.
I am not diagnosed, but am having difficulty as well with walking. I find it much easier to use a shopping cart to lean on when I am in the grocery store. If I walk for to long of a time I will be overcome with fatigue and need to sit down. When that happens I usually am wiped out for the remainder of the day. I have been having pain in my right ankle and muscle tightning which turns into a charley horse feeling that lasts for days. I can see where the walking sticks would be very helpful.
I have weak legs which I've been putting up with for several months. Since I'm now on major blood thinners, I think it would be dangerous if I fell, so I broke down and got a quad cane. Quad canes rock - they stay upright without having to find a place for them, and it's more of a support if you need it to stand up. I feel like a grandma walking around - I hope this isn't a permanent problem - but my leg weakness has been on again, off again, since my diagnosis.
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