Working out?

[Trapped in myself]

I want to start working out a few days a week, but I don't know how much is too
much, or how little is too little? Before I had PLS I would workout on a 3 day
split, Mon/chest,shoulders,triceps, Wed/back,biceps, Fri/legs! I would use heavy
weights and push myself to failure! However, now that I have PLS I'm not sure
what to do? I don't think I should use heavy weights, because logic tells me I
should start very light! Nevertheless, the 3 day split still sounds logical. If
I had to guess, I would do the 3 day split starting out very light, and just go
through the motions of the exercises only adding weight very gradually! Can
anyone give me any input on this subject? I would really appreciate it! Thanks

Dave
Angola, NY

 

[irismarie]

this question always comes up. A year ago I was asking it. Now I KNOW the answer. DON'T DO IT. Take care of the muscles you have. MY specialists here in France insist over and over the most important thing is to protect and nurse the muscles you still have. Keep supple as possible by stretching or better still getting a physio to do the stretching and turning. I know it is terribly hard when on e has been a sportsman and you feel you must work but my experience is to go with the flow of the illness.

TO get into a rollator then a wheelchair before it is absolutely necessary but while you are stumbling and falling and straining. The point is that some of your muscles will already be a lot weaker and you may not be aware of this. THus you can easily strain them and do more damage than good

there are plenty of articles on the web about this. Here is one

http://www.mndscotland.org.uk/image...C Getting the Best From Physiotherapy2009.pdf
Good luck and believe me I know how hard it is to stop exercising when you have been superfit.
Irismarie

 

[Tokahfang]

Many people with PLS and HSP have reported great reports from water exercise, which is low strain and high resistance. Unfortunately the "work out till you sweat, burn, and are tired" can be damaging to us in the long term. I would suggest getting a scrip for at least a few weeks of PT, and work with a physical therapist on what will be healthy for you. Make sure they have experience in neurological disease, which responds very differently than say a static spinal cord injury.

Us PLSers do better with exercise than ALSers, we still get some repair to our muscles so some strengthening can be possible. But long before you know a muscle is weak, your body has been compensating for it, so Iris is correct on that point. I deformed my hips overdoing exercise, and that pain is with me still today, and will be until I finally kick the bucket. Make sure you have an up to date clinical strength test to catch weakening muscles before you hurt your joints.

In summation, be careful, and seek out medical guidance. Taking yourself to a gym to "take it easy" is a way to hurt yourself bad, and I speak from experience.

 

[TxRR]

I disagree with the above. I was diagnosed with PLS in 2007 and am still somewhat mobile and able to work. I hit the gym three days a week. I train long, hard and heavy. I also take different kinds of body building supplements (protien, creatine etc). My suggestion would be if you think your body can do it then do it. My muscles seem to recover just fine and I have the size and definition to prove it.

 

[Tokahfang]

I thought my body could do it, my body didn't agree. I raised my pain tolerance through the roof, pushed hard, and even looked quite strong. Some of muscle groups were, I could legpress weights thought to be beyond most of my gender. I took the PT's advice, but I wasn't being followed up. As the PLS progressed, some muscle groups in my legs became weak, and my body used the strong ones to compensate. It does this somewhat silently, without alerting you. By the time I landed in a rheumatologist's office because I had lost the ability to walk, my hips looked deformed. That damage is permanent and irreversible. It still hurts, every day, and I have been in a wheelchair for 6 years now. Be careful.

 

[TxRR]

I wake up in the morning with stiff/cramped muscles and barely able to move. In addition, I had back surgery in 2002 to correct a hernitaed disc so I have severe back pain. I am barely able to walk from the parking lot into the gym at a snails pace.

I get into the gym and get my muscles warmed up by stretching and some cardo. I then hit the weights and presto!....after about two hours i walk out like a new man. Next day I have a little soreness but that goes away and my muscles feel strong. Don't get me wrong, it doesn't take my symptoms away but I feel alot better than if I would have just layed on the couch all day.

 

[joelc]

I wake up in the morning with stiff/cramped muscles and barely able to move. In addition, I had back surgery in 2002 to correct a hernitaed disc so I have severe back pain. I am barely able to walk from the parking lot into the gym at a snails pace.

I get into the gym and get my muscles warmed up by stretching and some cardo. I then hit the weights and presto!....after about two hours i walk out like a new man. Next day I have a little soreness but that goes away and my muscles feel strong. Don't get me wrong, it doesn't take my symptoms away but I feel alot better than if I would have just layed on the couch all day.

Are you sure you have PLS or ALS? LOL.

 

[TxRR]

Are you sure you have PLS or ALS? LOL.

Yes and with all the classic symptoms that everyone else has. I just try to stay active and push myself everyday. I figure some day soon they will find a good treatment or cure and I want to be in shape and ready.

 

[olly]

hey txrr i wish my body could do that.
i used to love running and went to the gym 3times a week,if i could just do 10mins it would sieze me up for days now.

like beky said water exercise is best,i did try this once but was deflated...........even though i used to be a good swimmer my lower body from waist kept sinking and i did not have the arm strength .

i have thought about cheating and getting on of those body toning machines,the ones with the stick on pads.
though i am skinny at 42 a few areas need a bit of toning ,bum comes to mind lol.

 

[TxRR]

The important thing is try to remain active with what ever form of physical activity you can tolerate. Even stretching helps me out alot. When my legs get real stiff, I start stretch out my hamstrings everyday atleast three to four times a day. When I first start out I can barely touch my toes. After about the third or fourth time, I can touch past my toes to the middle bottom of my foot. After that I notice I walk alot better with a longer stride.

My PT told me not to do heavy excersises but I didn't listen. She told me that in 2007 and here I am in 2010 still going strong.

I say if your body can tolerate it then go for it. Only you can be the judge.

 

[Tokahfang]

3 years isn't really long term, though. I onset in 1995, and in 1998 I thought I was doing well. I couldn't run, but I walked to work every day and back, with a cane sometimes. In 1999, I could no longer stand for work. A year later, inability to make the trip from building to building on my college campus sunk my academic career. A year later, my x-rays showed what looked like arthritis.

The key point is this, I DON'T KNOW when I started damaging my hip joints. I have photographic proof that I did, and continued to do so until 2005. But my body didn't send some grand signal, and by the time the pain was noticeable, the damage had already begun. They eventually became deformed, and I didn't find out until a few months after I started using a wheelchair. I thought I could handle it, and I am sure if I could send a messenger back in time that is what the me of 2000 or 1999 would say.

The damage is permanent. For that excess, I pay in pain radiating down my legs every day. I have very specific seating needs, and bouncy car trips can make me weep with the pain. PLS is a long, slow disease. I can look forward to having that pain for decades more, should things go well. Decades of pain just isn't worth it for a few years of pushing it.

I don't have a crystal ball, and I don't know where your progression or the original poster's is. There is a woman on the mailing list that can still walk with a walker 40 years in, and I was a full time wheelchair user after 12. You may be able to get away with what you do right now. But I urge caution, because it creeps up on you, it isn't always obvious. And the long term is, well, long...

 

[johnnyliverpool]

becky..i was a profesional athlete for 15yrs ..i could not in any circumstance exercise agressively now without paying a great price in stiffness and pain.and god knows i tried......one of the decent neuros i seen told me that my neck ,hips and my skeleton body was being twisted by the spasticity.......keep on the move for sure...sit down too long and the stiffness and pain will get you then as well.....thats my experience anyway...pumping iron and upper motor neuron symptoms?...just dont compute....yours, wad do i know....johnny..............

 

[olly]

after 11yrs i am still sort of walking,can walk a short distance with stick or walker but a day out would be out of the question without a wheelchair............unless i fancied a few weeks in bed completely crippled.
one thing i learnt early on that i think has kept me more mobile is to pace yourself.
do only what your body feels like and rest when you need it.
the first few years i pushed myself and during those years my progression was quicker,now i take things easy and progression is at a snails pace.
like beky my hips,especially right hip is weak.
we are all different in progression but we can take a pro active role by taking good care of ourselves,llike beky said pls is a long term disease.
i found the best thing is stretching................if you have a real spastic limb stretch it as hard as you can ,for the few seconds you can hold that stretch you feel instant relief............this proves to me regular stretching exercises are good.

take good care.caroline

 

[AKmom]

Olly I wish I could get my husband to understand what you wrote. I will be showing him your post next time he is by my computer. Because of my bro in law who is a chiropractor who thinks he can cure everything...no one will even consider me getting a wheel chair to help me out on longer days out. And up until I read your post I think I might have bought into their thinking that if I don't push myself to the point of extreme...then I will loose it all together and progress faster. But it seems that what your saying is more true because it seems my disease is progressing really fast and I have been pushing myself really hard to do not only everyday stuff but trying to get in as many excursions out and about. The harder I try to fit so much into my life because I can see where I am loosing the ability to do something...the faster it seems I loose it.

Yet the disease doesn't bother me as much when I do relaxing things...like going on a cruise. This is something we started doing a couple years ago...and sitting out on a veranda, sipping my favorite soda and basking in the sun reclining on a lounger for days on end....I am less spastic and enjoy being me. No one asks me to do anything for them and anything I want I just ask and I recieve! The point is that during those trips, outside of the preparations and traveling, I am relaxed enough and do not seem to be in so much pain or progressing in disease. I guess that is sort of a physical thearapy of itself and to bad its not covered by insurance..lol. But I cannot live in that realm everyday, so maybe if I had a wheelchair of my own and use it for when I do these long weekend of horseshows or soccer or whatever it is that I have to be involved in, I might just balance out the horrible pain and fatigue and spasticness and be able to do those things much longer and happier.

 

[Tokahfang]

I am a huge advocate of using a wheelchair early, and extending your ability. You don't have to use it every day, and fun things can be fun again. My wheelchairs took me to the tops of mountains, hiking, etc. I feel silly for waiting so long, I could have had a year or two of extra ability and less pain.