I feel your pain. I guess the simple answer is with MS there is no simple answer. I wish I could waive a magic wand over all of us but muscle weakness seems to be part of the journey. We all have dreams and perhaps we can still achieve some of the more adventurous, like wakeboarding, snow skiing, golfing, just via other methods. I am not suggesting give up on everything but just to make adjustments. I have started limping again today and it is so hard. In fact I am crying right now just lamenting this loss of strength. My Uncle has had polio since he was a boy and has been in a wheelchair for nearly a life time. He faced exactly the same challenge that doing weights actually reduced his muscle mass so he stopped and in the process stopped stressing. I have had this disease for five minutes but my advice for what its worth is to be gentle on yourself and focus on all the wonderful, wonderous things that you can still do. We still have our ability to communicate and we can add so much value to those around us. We have a unique perspective on life that many people will never get. So enjoy each day, smile, laugh, share, and love.
JJ, I do all the things you do. I stretch, exercise, and listen to my PT. There have been days when my legs give out. When that happens I am like a string puppet with no strength from the waist down. In the past it meant that I needed to get to the infusion center for a treatment of steroids. Now that I can no longer handle steroids I don't know what my neuro will recommend.
So many think that if we do all the right things this won't happen to them. It does. It happens to many of us. MS is an ugly disease. She takes what she wants when she wants. I wish I had something positive to say to you.
As far as what your dh is telling you please remind him that MS is a disease of the nerves not the muscles. The muscles at that point are not receiving the message to the muscles from the nerves to move.
hmmmmm in the future i'll have to use assisted aides all the time, not just during relapses, i'm slightly stuborn but half the problem is my walking stick and roller dont help when i'm falling over all the time, its a bit more dangerous cause i take peoples head off lol
Wakeboarding is a cymble for me, its hard to explain why this is so important for me to still be able to do, its not something i'm going to accept or give up on, with out a heck of fight, even if it is just the mental journey of doing 'what ever' it takes to keep it a little longer. Its going to be interesting if i can pull it off this coming season, my legs are weaker and my balance is crap lol i really do fall depending on the surface i'm standing on so the constantly changing water surface i'm hoping is not going to be an issue because i'm going to be getting the sensory signals from my feet standing on the solid board, or i hope my brains tricked into thinking its solid lol.
I hear you just not going to listen (said with love whilst blowing a rasberry) ohhhh oh i'm not officially dx so i can tell my self i'm a lazy git or pretend its not happening lol I am an optimist and i'm going to take my last breath still saying its all good, it actually is really. This is just THE one thing i need because I want to experience my 'old' life for a little longer, experience not spectate and if i can find something to make that happen its worth the shot!!
Not soppy thinking just a goal i'm still aiming for, so any tips or tricks will be welcomed!
Heck JJ, I did the same thing not even knowing there was a thing called MS. I got a good 24 years in before those bad things began happening. It is way too early to throw a towel in...It may even be something you never have to face.
Muscle weakness is not a result of a lack of protein or any other deficiency. It's simply that the nerves aren't communicating to the muscles in your legs.
I've experienced extreme leg weakness - unable to get up from the couch because my legs won't hold me, or being so weak that they tremble when I try to stand.
And... there's nothing you can do about it. It really *****. I know they have drugs to help your walking speed, like Ampyra, but I've never tried it, so I can't say.
I used to run - at first I'd run around the neighborhood, then as the weather heated up, I'd start running on the treadmill. Moving to a neighborhood without good running roads, I ran on the treadmill exclusively. Now I can't run at all. Leg weakness is a big reason - I trip and stumble on the treadmill. Bladder weakness is another. All that bouncing causes me to wet myself. Which also *****. I suppose it would be okay if I were in my own home, but at the gym it's hard to explain.
Sometimes my legs are stronger, and sometimes they're weaker. I can't predict from day to day what they'll do. I've learned not to set myself up for failure, because chances are the legs won't cooperate.
Well, JJ, I may have missed something along the way, but have you been to a physical therapist who specializes in neurology-based issues? These are hard to find, even in my big medical-specialty neck of the wood, but it might be well worth it.
I've been going to a gym pretty regularly, with one goal of strengthening the muscles that do work well, hoping that they'll compensate for the ones not getting sufficient nerve signal. My right side tends to be weaker, and I'd notice that in some activities the left side was doing more of its fair share, but now things seem a bit better, so some unaffected right nerves and muscles must be kicking in.
Muscles atrophy from lack of use, and we can't force ourselves if the nerve doesn't cooperate.
I guess a PT could work them for us, but how realistic is this over the long haul. Wish I had a better answer.