Let's be honest.

[Maine/Boston]

No sugar coating. I was dx 9/97 and now I am in a W/C and people tell me to exercise and I will walk with my walker. I just need to exercise, exerciuse and exercise. That I will get stronger and that is what I need. So be honest will this happen? I am no longer on any of the CRAB RX have taken them all but now I am not taking any. So any comments or advice be honest.
Thanks,

[Cat Dancer]

Exercise is a good thing, keeping your muscles toned, your heart rate moving. But it will not necessarily cause your legs to strengthen sufficiently for you to walk. What is wrong with your legs is not muscle weakness. What is wrong is that the nerve signals from your brain to your leg muscles is broken...non-existent...malfunctioning. If the nerve signals don't get through, no matter how muscled and toned your legs are, they'll not support you.

I do take Betaseron regularly, and hope that one day they'll figure out how to regenerate those nerve signals, so I should exercise so that when that day comes my muscles will be strong and able to receive the signals, and maybe I could then walk again. But it won't be because my muscles are good -- it'll be because the nerve signals have been reconnected.

There are exercises designed for people in wheelchairs, or who cannot stand and "dance around" in a gym, which will help your body...but again, not make you walk again. Sorry.

[calcal]

No sugar coating. I was dx 9/97 and now I am in a W/C and people tell me to exercise and I will walk with my walker. I just need to exercise, exerciuse and exercise. That I will get stronger and that is what I need. So be honest will this happen? I am no longer on any of the CRAB RX have taken them all but now I am not taking any. So any comments or advice be honest.
Thanks,

Are your doctors telling you that exercise will make you stronger and that is what you need? Last time I looked, exercise didn't help with remyelination.

[Maine/Boston]

Dr's do not say it will help me walk but nor do they say it won't. You know they are vague about what they do say.

[Cat Dancer]

I think it's important for your overall health to walk as long as possible, and if you can get about with a walker or forearm crutches, you should. But there may well be a time when you can't do that any longer. Don't let folks...even doctors..tell you it's because you're lazy!

[Maine/Boston]

I do try but it is so very hard and I am so afraid of falling. Some days it is not as hard it all depends on the weather. This is just an awful deisese.
As we all know too well.

[BBS1951]

I hate to be a Jonny one note, but have you tried exercising in a pool? Pools are very forgiving: if you tip over, nothing gets broken or hurt since you are in water. And the water keeps the body cooled while you try to elevate your heart rate with body motion. There are folks who I've seen at my public pool in wheel chairs and they somehow manage to get in and out of the pool!

The exercise won't make you walk, but it will control inflammation to some extent and will contribute to wellness, which is important. For MS, one of the dangers is that one becomes less mobile, thereby becoming overweight, or out of shape in terms of heart and lungs, and thereby overall less well.

[Maine/Boston]

That would be good I agree but acess is not readily available. I agree about staying as active as posible for total health.
Thanks

[sleepy1]

Really, I think it will depend on the type of MS you have.

Exercise has been good for me, my neuro told me if I do nothing else just walk. I have followed his advice for 21 years and I am still walking.

I have seen the looks from radiologists and my doctors when they look at my MRIs......based on the MRIs I should not be walking.....but I am.

Will exercise work for you....I don't know. I can tell you it is a slow and frustrating process.

I use a treadmill so I can have something to hold onto. I also like controlling the speed....on good days I can go faster on bad days I can go at a crawl. I also do stretching, hand weights and pilate bands.

[lady_express_44]

I want to be able to do what I can for myself, for as long as possible.

I am not in a wheelchair, but have been paralyzed on a couple of occasions. When it happened the first time, I was fit and healthy until the incident, and I recovered fairly quickly. When it happened the second time, the event was much more difficult to cope with, and I recovered a lot more slowly. I was not fit prior to that incident.

Exercise increases circulation, can enhance some mobility, as well as increase strength and flexibility. If you can do posture exercises, it may even reduce pain. So, even if you can't walk, there are probably several benefits.

Cherie

[pcat]

Maine/boston:

good advice from all. I get that every so often..just exercise, just do it every day, yada, yada..

the people who do not have MS have NO IDEA what we are going through.
if I exercise too much, whether it is deliberate or by chance ( no little zippy cart at the store) I'll twitch and hurt all the next day.

example: I went to a cookout. 1/4 mile from my house. sat around in the shade, ate burgers, I never got too hot. or so I thought.
the next day I couldn't stay out of bed. up for a coke, or bathroom.
back to bed.

some things just aren't worth it.

just as cat dancer said- it's the signal. no amount of exercise will fix that. I always try to stretch, wiggle my legs and arms-circulation is better.

but you won't find ME at the local gym. I can't. it's just that simple.

-sheila

[Abby2006]

How is exercise going to repair damage to nerves in brain and spinal cord what 'teach a fried wire new tricks', I don't think so

Abby

[MomtoM]

Hey Jan,

Sorry you are feeling bad. It is so discouraging sometimes. I have times when I just want to say the heck with it and give up.
anyway, for what it's worth, here's my $.02!

One thing I've been doing since I got stuck in this wheelchair is the exercises the PT taught me at the hospital.

They are for lying in bed.

Examples...squeezing your butt and holding it for 5 seconds. repeat 10 times
trying to flex your feet and hold it the same way as above. (my right foot doesn't move but she said just the act of doing it and thinking of it moving is good)
...squeeze your thigh muscles and hold, repeat (same as above)

...try to get your legs up off the bed and hold, repeat the same way.

You can do this for any muscles really.

Plus stretching. It's good to keep the blood flowing.


When I can get up (hopefully this time I will again) I try to exercise as much as possible so that the muscle is already built up. Then, when I have a relapse or just times when my legs/arms do not work, there is much less loss of tone/atrophy from being unable to move them. And the muscles are still there waiting for the next time those nerve signals get through.

If you are afraid of falling, try sitting exercises that can strengthen your muscles. If you have a gym or YMCA around, join if you can and use the weight training machines. You stay seated so you won't be likely to fall. I even go in there with my w/c to work out, lol, it's quite funny to see the looks on people's faces who don't know me!

If you don't have access to a gym, there are resistance bands available at any store like walmart and you can sit and do those too.

Building up the muscles will help when you are able to stand up and they will be there to use when your body is sending the signals through better. (this is what the PT says)
definitely the pool exercise is awesome. It's too bad you can't get to it.
I was just in Barbados and if someone could help me get into the ocean or pool, I could stand up when I was in deep enough water!!! What an amazing feeling! And better yet, I was able to hold my daughter.

I agree with Catdancer though, if you cannot walk, ignore what anyone else says! you know your body and use what tools you need to get around!

Take care,
deb

[veronica]

it depends.
I think your muscles must be very strong.
I am convinced I will walk again, with a stick.
have faith!

[Maine/Boston]

Your posts are all so positive and true. I know this in my mind I guess the depression for my life's direction is getting in the way of my coping.
Thanks for the encouragment
Jan

[MomtoM]

Jan, I can so relate to that. Depression over my limitations really takes over me sometimes. I'm much better at giving positive comments to others than doing it for myself, but sometimes it rubs off on me and picks me up if I just keep trying to think positive stuff. It is no picnic though, is it?
Sorry you are going through this too. The past few weeks I have been vacillating between hope and despair, I only can hope that I'll end up on the hope side. Can you tell the despair has taken over this morning? lol:(

Anyway, good luck and I hope you will be able to get out of it too.

Deb

[Mariel]

I have had weak arms and hands more than weak legs, although legs did get somewhat weaker. For many many years, I struggled with what had happened to arms and hands, and since this disability was less visible, no one gave me any advice one way or the other. However, when I recovered from the worst phase of this problem about 20 years ago, my arms got stronger, and I use every opportunity I have to USE those arms and hands. This is not outright "exercise"
but it is putting the limbs to use.

I also "use" my legs lying down. I move my legs around, stretching, rotating the ankles. Also I stand at a counter and go up and down on my feet. If your demyelinization prevents your lying down and moving your legs and feet, this would not help--but I gather that you still have some feeling in legs and feet, so why not try this? You could also lie down on floor, bed, or couch--anywhere that you could put your feet flat on the wall. In this position, push against the wall with your feet, to strengthen legs including ankles.

I was a dancer as a child and teenager, very active in this, and so has been my lifelong habit to move anything that will move, and I believe it has kept me active longer.

I did have an incident after starting college, when I became much sicker (not diagnosed until much later). I could no longer "rise" on my "toe shoes". I had been very adept on "pointe" on toe shoes, even running around a stadium at "half time" en pointe, as entertainment for the high school. Suddenly I could not even get up on the toe shoes once. Ironically, at this time EVERYTHING was considered emotional in me, so no one even took this very dramatic change as a sign of anything. Looking back, it is utterly ridiculous--but then I was coming from a very advanced use of feet and legs to a level at which most people were, so no one noticed.

I never got up en pointe again but I did continue to exercise in many ways, although using my arms and eye-hand coordination was the big weak point which usually would stymie exercise. For instance, tennis or golf or basketball--couldn't last more than two or three minutes. Archery class, got a D. Dance or running classes--always an A.

And always this was thought to be "mental"--the D grade failures--it is preposterous but there it is. Demyelinization can be so hidden that it produces actual abuse by teachers and doctors and authorities who do not understand it.

[sleepy1]

How is exercise going to repair damage to nerves in brain and spinal cord what 'teach a fried wire new tricks', I don't think so
Abby

Exercise will not repair the damage however it can allow you to remain mobile or at the very least help you keep your muscle tone which can be very helpful during an exacerbation.

Abby, If you choose not to exercise and the be negative about the positive affects exercise can have on MS that's up to you.......BUT I would have been wheelchair bound long ago had I not kept trying to make my legs work.

As I said this may not work for everyone but it most definitely has for me.

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_exercise

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_brochures_exercise

[paj]

Exercising will not repair damaged nerves. At least I don't think it will.

But one of the theories is that by working to do something that you have difficulty doing, you may teach your brain to use a different nerve pathway.

The ole highway is closed, use a secondary road or a back road to do it. May be slower and less traveled but will work.

For me, its the, if a miracle occurs and the nerve damage somehow gets repaired, I don't want the fact that my muscles are now gone to be the reason I can't walk.

One teleconference I was on, Brian Hutchison from Heuga, I asked the exercise question, cause I don't want to fall down or not be able to walk the next day. Its do it as long as feels reasonable, even if its 5 minutes, sit, rest, do it again, 5 minutes, sit, rest, do it again 5 minutes. If you can of course. I try that.

But I'm not currently using a wheel chair although my m-i-l was trying to convince me I should last night. Easy for her, still walking just fine at 86.:rolleyes:

paj

[AJ49]

PAJ, I have a PT that says exactly that! She also has MS and was w/c. Most days I see her she doesn't even stagger. It took her a long time but she was her own experiment and it did improve.

There are things to do that rewire the nerve pathways. Using a PT that understands MS has been a true blessing in a life that doesn't seem to have many blessings.

When I first started I used a walker and had to ask someone to put it in the van for me when I was finished(I can still drive-different muscle group from walking) and now I can fold the walker and lift it into to the van.

Maine/boston, keep trying - it can get better. I may never have that models walk but I'm walking.

[BBS1951]

Depression is a bear. Sometimes I think it is a greater disabler than the disease itself. Depression makes a person tell themselves that its hopeless and too hard, thus preventing a person from doing things that could be beneficial and could remediate the depression to some extent.

You have to just, "Do it", talk back to your depression. Start out small, maybe just sitting on your chair and moving every part of the body you can move, over and over for five minutes. Do it several times a day. Make a plan of how each day you will do a little bit more.

Most communities have an indoor pool-- often for handicapped folks-- such as an Easter Seals pool or YWCA etc. My pools have a pool wheel chair that rolls right into the pool! Check around by phone while you are doing your home based movements.

Re-Read the chit chat thread where Cherie posts about what doing exercises (lifting arms etc) in a pool has done for her. She does it in a small pool, she doesnt swim, and yet she is doing much better. Its an inspiration.

[Maine/Boston]

I need to come here daily for my motivation fix. I am going to get myself moving and do it for me. Thanks for the push and keep me in your thoughts of pushing.
Jan

[pcat]

Jan- if you need to, look into some antidepressants. they are not for everyone but I sure need them.

wellbutrin is the best for me. look around on the net. talk to your doc. for me, I couldn't stay mired in that awful place.
I'd cry and couldn't stop. no motivation to do anything.

it's an option.

-sheila

[Maine/Boston]

I have been taking anti-depr. for years and I have taken many diferent ones. I am just going to have to get myself thru this. My PCP is very close and knows what I am going thru I e'mail him whenever I need to. I think maybe it's the full moon?

[justdoit]

Hi Jan...

I struggled with depression. That is why my screen name is "Just do it". Kinda funny, but when I feel down, and unmotivated.....I realize I'm not helping myself any, and I need to "Just do it". Sometimes it is still really hard. Keep coming here......the people here really care.

I will pray for you. Have a good Sunday ((hugs))

Blessings - JDI

[BBS1951]

Eat chocolate and sit in the sun. Both have been found to boost mood and they are easy (and fun).

[karlee]

No sugar coating. Exercise will not make you walk again.

BUT ...

As long as you cannot walk, it is important not to allow your weight to balloon up from inactivity. There will come a time, maybe during a transfer, that you will end up on the ground because your legs gave out, unable to get up by yourself.

Maybe it will happen at home. - if you're lucky. Maybe it will be in a busy parking lot. Maybe the floor of some public bathroom. But it will happen.

By doing your best to maintain a reasonable weight, others may be able to help you up to your car/chair/toilet.

Since I cannot exercise like others (paraplegic and can't raise either arm for more than a few seconds) I try to maintain my weight through diet. It's hard. But not as hard as requiring 3 or 4 people to get me off the floor.

So if you can exercise, do it. Do it to look and feel better about yourself. Do it to burn calories and to strengthen the muscles that still work. Do it to avoid possible future embarrassment.

No sugar coating here.

[MomtoM]

There's a site I love and belong to called sparkpeople. It's a sort of "weight loss" or fitness site, but also focuses on a healthy lifestyle. I belong to a team for MS on there and have made some great friends.

Anyway, they have a ton of articles and I thought of this one that you might be interested in. This is what I am using to work out from a seated position right now. (except not the leg ones yet)

http://www.sparkpeople.com/resource/fitness_articles.asp?id=626

I hope the link works. I'm going to come back and check it. Feel free to come and check out sparkpeople if you want to. The team I'm on is called MS and weight.
I am Maddiesmom on sparkpeople.

Deb
PS It works!!

[veronica]

Read about EFT

[paj]

PAJ, I have a PT that says exactly that! She also has MS and was w/c. Most days I see her she doesn't even stagger. It took her a long time but she was her own experiment and it did improve.

There are things to do that rewire the nerve pathways. Using a PT that understands MS has been a true blessing in a life that doesn't seem to have many blessings.

When I first started I used a walker and had to ask someone to put it in the van for me when I was finished(I can still drive-different muscle group from walking) and now I can fold the walker and lift it into to the van.

Maine/boston, keep trying - it can get better. I may never have that models walk but I'm walking.

I kinda do this with balance. My balance was way off, somewhat better now but stillnot great. I do yoga balance exercises in front of a mirror (with a wall to grab) and try to teach myself balance.....who knows. a little bit is better than nothing.


Glad its helped you.
paj

[MomtoM]

What's EFT, Veronica?