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.
Hey JJ, I absolutely love your attitude... I have days where I'll set around saying, "Oh, woes me" but it makes me mad when I do that... I make myself get up and walk every day weather I feel like it or not... It may not be very far but every day I'm up...
Sitting in my power chair day in and day out can really take it toll on you and I just can't make myself resort to it 24/7... When I do walk I take a lot of falls, and I bounce off the walls...lol It's probably quite amusing for someone to be watching me getting my walk in...
I think the hardest thing for me to give up was playing softball... I loved the game and played constantly... Had MS not taken that away I'd still be out there playing... We never know what life is gonna hand us but when it gives it to us we need to make the best out of it...
I'll be praying,
I understand what you are saying. My legs have gone very quickly. I was diagnosed with PPMS last July. I think those of us who were athletic, and relied on our legs for our sports keep holding on to the notion the our muscles will compensate somehow. For me it was long-distance cycling. My balance had detiorated for a time, making that impossible. It since has improved to the point that I could probably keep a bike upright, but my leg weakness prevents riding.
I ride a stationary bike at home and at PT, but the going is slow. I have noticed that in spite of the work my muscles continue to atrophy. I started with foot drop on the left, but is now bilateral. The calf muscles are sad to see, and I am now noticing the quads and hamstrings are getting floppy, too.
November 2010 I bought a wheelchair off Craig's list because I did not have health insurance for a bit. I have insurance now, and was fitted for my own chair just last week. It is something I will use in and out of the house. I try to use a cane as much as possible at home, but those times are fading quickly.
I am right there with you. Hang in there. We all know the importance of a positive attitude. Take care.
Thanks everyone for the encouragement!!
What i find is happening is my legs are becoming more and more unpredictable, from the start of the day to the end they just keep loosing their strength and reliability. I am constantly thoughout the day doing stretching exercises to keep them supple, my calf muscles get tighter and tighter so I really need to keep stretching. That same tight feeling is now happening in the top thigh muscles but inner thighs are fine though floppy, and i have not stopped doing the same exercise routine for over 2 years, appart from breaking it up into smaller and smaller blocks.lol
My window is getting smaller, I use to only have my left leg trembling in protest when i exercised but now my right is doing it too. The left has clonus and it looks like my right is starting to go that way as well, i really am not sure how this part works but the more I am using my legs the more bouncy i get, which of its self is nutty but when i add the balance issues into the mix and folding like a hinge, it can get a bit precarious.
Since my 'big bang' of 09, when ever i do wakeboard and let me tell you it is a challenge even though i can only really do a few minutes before all my strength is completely gone and I really do mean gone. Gone so far as i am unable to move at all, fully supported by my vest holding me up in the water and once they get me into the boat, my body reacts with big chunky rolling spasms and jerks. My tremor is full on, i'm rumbling hard and that part isn't pleasant but i've accepted its pay back, unfortunately it can last for hours before it starts to settle so i'm pretty useless and i hate that. lol
I've always been able to feel my strength go, i can feel i'm getting weaker, then whooosh i've got nothing and i start to fold, lol i cant try to push through it cause there's nothing left to hold me up, for safely i let go and lean back so i hit the water as softly as possible. I'm not in the same physical state i was 6 months ago, i've had 2 hard hitting relapses since then and my balance, muscle strength and sensory input is really shoddy now lol and its winter here so whats it going to be like when i'm dealing with the blasted heat too?
Loggically i know this is probably a fools errand, but still I NEED to do it or at least try everything available that can help me get it done. Looks like i'll be giving up my board and going for a begginers, they have less glide and movability and more stability, lol i'm not going to be doing tricks so it might help like my gripper gloves help with part of the problems, inch by inch i'll get there!
Hey, I had a revelation this morning - Quixotic1 has functional foot drop, because of spasticity. You mentioned your pelvis pushing forward. I think you're having two problems - leg weakness and pelvic spasticity. I have frequent problems with the muscles of my hip flexors being spastic, but so far it only hurts and reduces flexibility.
What I would do right now is look for activities that don't require your legs. The toboggan (the inner tube thingie with the handles) sounds like just the thing. As long as you're not having problems with your arms! Mine get so tired.
Another thing to remember - while recovering from a relapse, you won't have as many resources to recover from fatigue. But in remission, you'll have more regenerative capability. Try to take frequent breaks and rest up, and you might get a little more time out on the water. Just don't push yourself, because once you push too much, then there's nothing left.
I'm not so sure about "the nerves not communicating with the muscles." The CNS is not sending and receiving the correct signals with the peripheral nervous system. The muscle, neuromuscular junctions and peripheral nerves are probably fine (EMG/NCS testing being normal in most MS patients confirms this) and in theory, you should be able to build muscle the same way spinal cord injury patients do: neuromuscular electrical stimulation (NMES). Take the CNS out of the equation and directly stimulate the muscles.
I would ask a PT before heading down this road, but it does get around the CNS damage that MS causes and would allow you to build muscle, even if you can not control it.
Riding horses has been a big help for me. I do not walk well. My legs go rubber. I get foot drop in both feet especially in the heat. Something about riding works muscles. I can tell the difference between my legs and feet from side to side. One side is more toned than the other.
It all depends on what nerve gets cut. I have been lucky for over 40 years but I expect to lose the use of my legs and possibly my hands by the time I am in my fifties. I use a jump rope and put it around my foot when I am sitting and pull my leg up and down.
Luckily we have the first MS trained PT's in the country at UNC we hope to spread the program to Universities all over the United States. I am on the committee. We have only graduated four so far. It is strange there are not specifically MS trained PT's out there. Our local chapter of the NMSS started the program. I go to all the lectures I can.