Aa
Loosing your legs = making sense of whats happening
Hey guys and dolls,
I dont think i'm ever going to get this straight in my head, i've actually been saying "i loose my legs" since i first collapsed in 03. I do believe it was originally more fatigue related, than muscle tone etc. 09 probably highlighted the difference more so because its when I first started walking like a human string puppet. Hmmmm that doesn't usually happen to 'normal' people lol
Mentally i'm still the athelete but physically its a constant (one i'm loosing) battle with just hanging onto what my legs can feasibly do. I'm not talking about what my legs do when i've lost my verticle but just my everyday. I understand the basics from Quix's health page but i'm still expecting from years of muscle strength knowledge (all my sports require strong legs & balance) that i can build muscle mass and strength. Well thats not true, my reality is the opposite, the more i do the less i have.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Muscle-Tone-And-Spasticity/show/159?cid=36
I stretch multiple times a day, i have adapted yoga to suit me and i'm determined but still i'm loosing muscle,not only strength but mass too. LOL i've lost my butt and my legs resemble chicken littles legs or rather they are chop stick shaped. Resently i've been finding it harder as the day goes on, to get lifting strength out of my thighs, my legs become really trembly as the muscles spasm in protest. I could always rely on my right leg but my right is playing up too. Seriously i am folding like a hinge just getting out of a chair, and forget about catching my self if i start to topple, which i understand from the health page is lack of fast acting responses.
All this stretching use to help but by the time i'm off to bed at night, i'm half folded up and still trying to get my legs to lift. I've even caught my self thrusting my pelvis forward, steps are less lift more sideways slide type of thing, which i'm not sure is a good thing to be doing though i have to admit i'm not such a sting puppet, more lurch so i'm just missing the bolts coming out of my neck lol
DH is once again insisting i need to up my protein etc because thats what the guys at his gym use to build muscle. He's also of the mind set that because i'm constantly moving, in tremor or muscle spasms that im constantly burning my muscle energy, i'm not sure he's wrong there. But what to do about it is the problem, at this rate i'm not going to get back on my wakeboard and seriously i'm not giving that up with out a bloody hard fight. So what do YOU do to keep your little legs strong enough to take your weight?
Cheers...........JJ
PS i'm open to any ideas, seriously anything!!
I dont think i'm ever going to get this straight in my head, i've actually been saying "i loose my legs" since i first collapsed in 03. I do believe it was originally more fatigue related, than muscle tone etc. 09 probably highlighted the difference more so because its when I first started walking like a human string puppet. Hmmmm that doesn't usually happen to 'normal' people lol
Mentally i'm still the athelete but physically its a constant (one i'm loosing) battle with just hanging onto what my legs can feasibly do. I'm not talking about what my legs do when i've lost my verticle but just my everyday. I understand the basics from Quix's health page but i'm still expecting from years of muscle strength knowledge (all my sports require strong legs & balance) that i can build muscle mass and strength. Well thats not true, my reality is the opposite, the more i do the less i have.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Muscle-Tone-And-Spasticity/show/159?cid=36
I stretch multiple times a day, i have adapted yoga to suit me and i'm determined but still i'm loosing muscle,not only strength but mass too. LOL i've lost my butt and my legs resemble chicken littles legs or rather they are chop stick shaped. Resently i've been finding it harder as the day goes on, to get lifting strength out of my thighs, my legs become really trembly as the muscles spasm in protest. I could always rely on my right leg but my right is playing up too. Seriously i am folding like a hinge just getting out of a chair, and forget about catching my self if i start to topple, which i understand from the health page is lack of fast acting responses.
All this stretching use to help but by the time i'm off to bed at night, i'm half folded up and still trying to get my legs to lift. I've even caught my self thrusting my pelvis forward, steps are less lift more sideways slide type of thing, which i'm not sure is a good thing to be doing though i have to admit i'm not such a sting puppet, more lurch so i'm just missing the bolts coming out of my neck lol
DH is once again insisting i need to up my protein etc because thats what the guys at his gym use to build muscle. He's also of the mind set that because i'm constantly moving, in tremor or muscle spasms that im constantly burning my muscle energy, i'm not sure he's wrong there. But what to do about it is the problem, at this rate i'm not going to get back on my wakeboard and seriously i'm not giving that up with out a bloody hard fight. So what do YOU do to keep your little legs strong enough to take your weight?
Cheers...........JJ
PS i'm open to any ideas, seriously anything!!
Bob, you will enjoy this...One of my sons read this thread and asked me "Are you sure the doctor said you don't have lesions on your brain?" lol...Then he politely explained what your post said and how out there mine was...We had a good laugh. So, okay, sometimes I am a bit dim of wit.
Hi all.
I had the same explanation about the myelin. My doctor explained it like the myelin was the rubber that goes over the electric wire from the lamp to the plug. MS attacks the myelin *they don't know why some think that the white cells are just told to attack the myelin and some think that there is a virus that is on the myelin so that the loss of myelin is like collatoral damage.)
So basically the myelin gets stripped off the nerve (destroyed by the white blood cells) (like stripping the rubber off the wire.) The brain can regenerate the myelin but it takes a long time and the myelin is not as smooth as it was before it's sort of bumpy like a scab and therefore cannot transmit the signals clearly as before and some of the messages do not transmit right.
I've had some doctors say there might be a correlation between the chicken pox virus, however there is nothing to validate this. Shingles of the brain cells? lol.
I had the same explanation about the myelin. My doctor explained it like the myelin was the rubber that goes over the electric wire from the lamp to the plug. MS attacks the myelin *they don't know why some think that the white cells are just told to attack the myelin and some think that there is a virus that is on the myelin so that the loss of myelin is like collatoral damage.)
So basically the myelin gets stripped off the nerve (destroyed by the white blood cells) (like stripping the rubber off the wire.) The brain can regenerate the myelin but it takes a long time and the myelin is not as smooth as it was before it's sort of bumpy like a scab and therefore cannot transmit the signals clearly as before and some of the messages do not transmit right.
I've had some doctors say there might be a correlation between the chicken pox virus, however there is nothing to validate this. Shingles of the brain cells? lol.
COMMUNITY LEADER
Thats all quite interesting, so thanks!
Jen: I think spasticity is a strong possibility. Tubing and the like is out for me, I have the same issue with my arms, i've actually been thinking my arm weakness came first, i started having periods of loosing strength in my arms back in my mid 20's, they never could work out why lol About 6 yrs ago I was suppose to have torn the muscle off the bone in my lower arm but i still wonder if that was right. The muscle literally hung down and flopped about and if i moved my fingers at all that muscle hurt and burned like nothing else. I'm thinking it might of just been no signal getting to the muscle, i may never know lol
Alex: I think thats a really great thing your involved with, PT training in MS is a bone of contention here too. I use to ride and i have tried to find assisted riding centres here and the only one I can find in my state was created for severly disabled children. I have one concern with riding and thats the ability to stay up right, i loose my verticle and slide sideways off chairs when i'm tired so I was thinking it wouldn't be such a good idea riding with out assistance, though i'm game to try!
Bob: Your thinking is in the same vein as my husbands, though i find it oddly confusing to get it to fit my reality. My body is actually moving all the time, though its definitely not by choice lol The lower hertz tremor with little jerky movements is constantly there and gets more rumbly as the day goes on or what energy level i'm at and its even more evident if i've got something in my hand, though i do belive its the entire me, not just what makes it more obvious.
Sumanadevii: I so get where your coming from, respect it but still dont know how to accept it as my truth. I just dont want to believe I cant do anything!
There is also the aspect of muscle spasms and freezing (spasticity?) and floppiness of muscles which are also outside control, use it and loose it makes no sense to me but that is what happens. Simple things like talking affects the muscles in my mouth so i find it harder to pronounce words and chew or swollow, this muscle thingy is adding on and on, seriously no one can say i'm not talking enough so i'm loosing or wasting those muscles away ROFL!
Today my right forarm is way too tight (feels like my legs do) I know thats because whilst i was out with hubby he had to hold me up, he holds his arm at a bent angle and i lay my arm ontop so i can hang on when i'm off balance etc. The ground is amazingly uneven and my brain can't seem to work it out. Lol i'd walk off on my own and came across a section of tiled paving that was a little wobbly and it wasn't flat, i'd probably only taken two steps onto it and my brain froze me. No way was i going to get another step out, I was loosing my verticle and i was looking like i was on a tight rope suspended in the air. lol
Lucky hubby was close enough, he could see i'd frozen and because he has normal eye sight he knew why, I on the other hand couldn't see the undulations because the cracks between the paving makes it look flat to me and when the floor moves even a titch, i'm toast. It looks like i might be wrong in my thinking, i thought wearing solid soled shoes would help, I thought bare feet and the ground surface was causing the confusing sensory input, bugger!
Anyway onwards and upwards, hmmm thats if i can find where i left my up lol
Cheers.......JJ
Jen: I think spasticity is a strong possibility. Tubing and the like is out for me, I have the same issue with my arms, i've actually been thinking my arm weakness came first, i started having periods of loosing strength in my arms back in my mid 20's, they never could work out why lol About 6 yrs ago I was suppose to have torn the muscle off the bone in my lower arm but i still wonder if that was right. The muscle literally hung down and flopped about and if i moved my fingers at all that muscle hurt and burned like nothing else. I'm thinking it might of just been no signal getting to the muscle, i may never know lol
Alex: I think thats a really great thing your involved with, PT training in MS is a bone of contention here too. I use to ride and i have tried to find assisted riding centres here and the only one I can find in my state was created for severly disabled children. I have one concern with riding and thats the ability to stay up right, i loose my verticle and slide sideways off chairs when i'm tired so I was thinking it wouldn't be such a good idea riding with out assistance, though i'm game to try!
Bob: Your thinking is in the same vein as my husbands, though i find it oddly confusing to get it to fit my reality. My body is actually moving all the time, though its definitely not by choice lol The lower hertz tremor with little jerky movements is constantly there and gets more rumbly as the day goes on or what energy level i'm at and its even more evident if i've got something in my hand, though i do belive its the entire me, not just what makes it more obvious.
Sumanadevii: I so get where your coming from, respect it but still dont know how to accept it as my truth. I just dont want to believe I cant do anything!
There is also the aspect of muscle spasms and freezing (spasticity?) and floppiness of muscles which are also outside control, use it and loose it makes no sense to me but that is what happens. Simple things like talking affects the muscles in my mouth so i find it harder to pronounce words and chew or swollow, this muscle thingy is adding on and on, seriously no one can say i'm not talking enough so i'm loosing or wasting those muscles away ROFL!
Today my right forarm is way too tight (feels like my legs do) I know thats because whilst i was out with hubby he had to hold me up, he holds his arm at a bent angle and i lay my arm ontop so i can hang on when i'm off balance etc. The ground is amazingly uneven and my brain can't seem to work it out. Lol i'd walk off on my own and came across a section of tiled paving that was a little wobbly and it wasn't flat, i'd probably only taken two steps onto it and my brain froze me. No way was i going to get another step out, I was loosing my verticle and i was looking like i was on a tight rope suspended in the air. lol
Lucky hubby was close enough, he could see i'd frozen and because he has normal eye sight he knew why, I on the other hand couldn't see the undulations because the cracks between the paving makes it look flat to me and when the floor moves even a titch, i'm toast. It looks like i might be wrong in my thinking, i thought wearing solid soled shoes would help, I thought bare feet and the ground surface was causing the confusing sensory input, bugger!
Anyway onwards and upwards, hmmm thats if i can find where i left my up lol
Cheers.......JJ
I guess my point is some of us can not get our brains (motor cortex) to move the muscles. The neuromuscular electrical stimulation doesn't depend on the motor cortex, CNS, root nerves, etc. It moves the muscles even if the patient doesn't want to move them.
Just something else you can bring up with a physical therapist.
Bob (as my hands and fingers bounce up and down on the keyboard)
Just something else you can bring up with a physical therapist.
Bob (as my hands and fingers bounce up and down on the keyboard)
Well Bob, I may have used the wrong words but in the end, damage is done by MS and we wish but cannot stop it. MS does what she wants when she wants.
MS attacks the myelin which protects the nerve fibers. My understanding is when the myelin is destroyed damage appears. My neuro explained it that it is like an electric wire, loss of myelin results in lack of transmission to signal the nerves. If those nerves are not sending signals ya ain't gonna make that muscle move. I don't care how hard you work in PT.
Now I have heard it is possible because the brain is so large that a new path might be found to make those muscles work. However, I personally have had little luck with damage on my spine from lesions. It seems they don't find a new path. I would think if we really could prevent damage to the myelin then you wouldn't worry about losing your sight. You could just exercise it back. Right?
I don't mean to sound flip. I just know how hard I have worked. I also know where I am and I did not choose it.
MS attacks the myelin which protects the nerve fibers. My understanding is when the myelin is destroyed damage appears. My neuro explained it that it is like an electric wire, loss of myelin results in lack of transmission to signal the nerves. If those nerves are not sending signals ya ain't gonna make that muscle move. I don't care how hard you work in PT.
Now I have heard it is possible because the brain is so large that a new path might be found to make those muscles work. However, I personally have had little luck with damage on my spine from lesions. It seems they don't find a new path. I would think if we really could prevent damage to the myelin then you wouldn't worry about losing your sight. You could just exercise it back. Right?
I don't mean to sound flip. I just know how hard I have worked. I also know where I am and I did not choose 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.
Alex
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.
Alex
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.
Bob
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.
Bob
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.
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.
COMMUNITY LEADER
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!
Cheers..........JJ
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!
Cheers..........JJ
Hi JJ.
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.
Beth
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.
Beth
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,
Carol
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,
Carol
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.
ess
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.
ess
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.
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.
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.
COMMUNITY LEADER
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!
Cheers..........JJ
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!
Cheers..........JJ
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.
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.
Oh JJ,
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.
Blessing
Alex
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.
Blessing
Alex
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
