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Two Questions

Posted: Thu May 28, 2009 1:02 pm
by Wendigo
Is it possible to get muscle strength, increase endurance and energy reserves through exercise, such as at a gym, in an MS patient? I will have had MS for two years this August and a lot of it is like trying to get your hands around a ghost, figuring out what you're capable of still doing. Even when I think I know, the cards get reshuffled by the disease and I have to start over again.

I want to stay active, not sit home and waste away. I find when I go out on shopping trips or driving that the day I do it I'm fine, barely tired and actually exhilarated that I've done something I wanted to do. Over the following days the price is paid, almost like a delayed reaction. It is almost like my energy is a credit card - I can charge up to the limit but the bill comes due and has to be paid. I don't know what the limit is.

I guess I don't know until I try and it's probably different for each MS case but I'm concerned that exercise might just eat up energy and leave me too exhausted for other responsibilities. Has anyone with MS been able to increase muscle tone, strength, energy and endurance through exercise? Better done through a physical therapist or for those who are still pretty functional like myself is a regular gym ok starting out slow?

Posted: Thu May 28, 2009 1:36 pm
by Lyon
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Posted: Thu May 28, 2009 1:38 pm
by Terry
Hi Wendigo,
I don't have an exercise routine, but I run my own home and do the yard work and everything else that needs done. I am always mindful now of time. I can still do just about anything I could do pre-MS, but only for a while. Eventually, the "credit card" is depleted. I have to ask myself what is the most important thing to do with my time, because I know that the energy depletes faster. With all that needs done, I just am not of the personality to use the energy stores, say, walking a treadmill, when the yard needs to be mowed. There are many folks here who do have an exercise routine and can help you better. I just wanted to agree that yes, the credit card gets depleted, and yes, I def pay for what I've done later. Sometimes I feel like I'm 100 years old, but a good nights rest helps usually. Sometimes not, and I just have to have a slow day. I do think that in the long run it is better to do as much as you can.
Best of luck to you as you figure this out.

Posted: Thu May 28, 2009 2:20 pm
by Wendigo
Lyon wrote:This thread might interest you http://www.thisisms.com/ftopicp-57453.html#57453
Thanks for the link, Lyon. It seems there is no conclusive evidence exercise makes the disease worse but may worsen symptoms.

About a month ago I walked, shopping, about a mile, and wasn't tired. Next day the top of my right foot went numb, next day up the side of the right leg, all new symptoms, neurologist wasn't sure about an attack or just from walking. It was an attack and got Solu-Medrol for it.

It would have been so easy to say the walking brought on the attack and give up or greatly reduce the walking.

Walked that same mile Sunday just fine but it has taken until today to get my energy back. No new symptoms of an attack though.

I'd gone to a two-day convention in early March that required long traveling, lots of walking, meeting new people, lots of new information thrown at me in a strange environment, most stressful thing I can imagine. It took a week to recover energy wise but no new symptoms to suggest an attack.

I really think there's a two-year-old "up there" pulling the strings at whim and I'm the puppet. Until someone comes up with a better answer as to what does and does not cause attacks, the story "fits" my situation perfectly.

I don't think of fishing as exercise but anything that gets one out of the house and focused on something else but the disease has to be beneficial.

Posted: Thu May 28, 2009 2:36 pm
by Wendigo
Terry wrote:Hi Wendigo,
I don't have an exercise routine, but I run my own home and do the yard work and everything else that needs done. I am always mindful now of time. I can still do just about anything I could do pre-MS, but only for a while. Eventually, the "credit card" is depleted. I have to ask myself what is the most important thing to do with my time, because I know that the energy depletes faster. With all that needs done, I just am not of the personality to use the energy stores, say, walking a treadmill, when the yard needs to be mowed. There are many folks here who do have an exercise routine and can help you better. I just wanted to agree that yes, the credit card gets depleted, and yes, I def pay for what I've done later. Sometimes I feel like I'm 100 years old, but a good nights rest helps usually. Sometimes not, and I just have to have a slow day. I do think that in the long run it is better to do as much as you can.
Best of luck to you as you figure this out.
Terry- Thanks for your reply. As of today, half of the floor of my kitchen is clean and the other half is dirty. I was up to cleaning half and will do the other half as I can. My whole house is "half" cleaned but anyone who complains can finish it themselves.

I am on Provigil, have been for about a year, and wonder if that might make me go over my "limit" and pay heavily for it over the next days to week. I only take 50 mg a day though, much less than the prescribed dose. If I get tired enough, like the last two days since that mile walk, no amount of Provigil helps that kind of fatigue - energy reserves were obviously "overdrawn."

Posted: Thu May 28, 2009 2:37 pm
by Lyon
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Posted: Thu May 28, 2009 2:49 pm
by Wendigo
[quote="Terry"]Hi Wendigo,
I don't have an exercise routine, but I run my own home and do the yard work and everything else that needs done.

I do mowing and yard work also, doing some each day. I have two sons who could do it but it's good exercise, fresh air, sunshine, in the morning not too hot yet, and helps me feel a sense of accomplishment. Besides, they don't do as good a job as I do :) A day may come when I just can't do it, but that's not right now and I'll deal with it if or when it happens.

Posted: Thu May 28, 2009 3:23 pm
by Lyon
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Posted: Thu May 28, 2009 4:00 pm
by Wendigo
Lyon wrote:
Wendigo wrote:I do mowing and yard work also, doing some each day. I have two sons who could do it but it's good exercise, fresh air, sunshine, in the morning not too hot yet, and helps me feel a sense of accomplishment.
The effect of healing/plasticity is one of my strongest interests and the most obvious truism regarding promoting plasticity is that activity owed to enjoyment and necessity are the two greatest aids to successful healing/plasticity. Especially when considering that the alternative might be a regimented exercise program that a person hates and will never follow.

In an earlier edit I had goofed up this link and I don't think it was working but you should read this article https://www.msu.edu/~lyonro/exerciseandms.pdf
Lyon - I will read the article - I saw the link but got sidetracked on the fishing debate :)

MS wiped out fine motor movements of my left hand, disabling me from working as a medical transcriber, which I'd done for 20+ years. That job required memorization of thousands of medical terms and drugs. One of my fears with the MS is that it will wipe out my memory, which is who I am. I began memorizing patterns pertaining to an interest/hobby I'd begun before the MS, thousands of pattern names and shapes, to where I could recognize many on sight. My vision took a hit with my first attack in August 2007 and looking at all those patterns improved my vision and memorization of the patterns I believe gave the "memory circuitry" reason to stay connected.

Posted: Thu May 28, 2009 4:08 pm
by Needled
Hi Wendigo,
My life in a sentence -- It takes me twice as long to do half as much. Then I still usually have to rest afterwards. Knowing that, I have to adjust what I do, which practically never coincides with everything I want to do. It's very frustrating. Regardless, I can still do pretty much everything, but I just know I'm going to pay for it one way or another.
As for exercise, my back is giving me a lot of problems, so that's put a damper on things. But the best exercise for me is walking. I don't necessarily walk straight :oops: and sometimes by the end of a walk my legs feel like they weigh 200 lbs each, but it is what it is. And when I can't walk outside, I use a recumbent bike. So I can sit down, watch TV and/or read when I exercise. What a deal!
N

Posted: Thu May 28, 2009 4:10 pm
by Lyon
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Posted: Thu May 28, 2009 4:21 pm
by Wendigo
Lyon wrote:
Wendigo wrote:My vision took a hit with my first attack in August 2007 and looking at all those patterns improved my vision and memorization of the patterns I believe gave the "memory circuitry" reason to stay connected.
I agree that it was necessary for MS research to change from being led only by what "seemed" sensible to a system like the current peer review process but I think along the way common sense has become something of a "redheaded stepchild" in the world of MS research.

I retain a high regard for common sense and what you're saying may not be provable at this moment but I think is infinitely sensible.

Keep following your senses.
I cannot multitask like I used to, necessary for medical transcription, but other capabilities are enhanced - concentration on one task. Now, if my disease would just stay stable and I could find something that would pay me for concentrating well on one task, as my energy enabled me, I'd be content :) I believe it's possible even for someone with MS to exercise their memory into the super normal category.

The nurse who administered the Solu-Medrol advised stacking coins or playing dominoes to preserve some dexterity of my left hand. Makes sense to me. It's possible that the progress that is made can be wiped out or set back in an attack, and no one knows what causes an attack, but the alternative is to give up. Had many days when I've wanted to but so far have been able to rise up out of that pit.

Posted: Thu May 28, 2009 4:41 pm
by Wendigo
Lyons wrote: Good example and I think the medical community stands to learn a lot in the next few years regarding clearer definitions of what REALLY are exacerbation's/attacks and what are temporary symptoms due to damaged and overworked neural circuits, and also whether or not overworking damaged neural circuits is capable of causing additional damage.

I haven't figured out how to grab a paragraph and put it in a reply. Lyons, I've been lucky so far to have had two neurologists who are not quick to call an attack. One did, scared me to death, wanted to put me in the hospital that day for five days, Rebif and Solu-Medrol. The MS specialist I saw right after that said it was completely unnecessary. I'd call her complaining of how especially tired and weak I felt - she said, no, doesn't mean an attack, you're probably just especially tired and weak, let's wait and see. I would not have my home if I'd followed that one doctor's advice - my insurance wouldn't cover quite a bit of it.

"Overworking damaged neural circuits capable of causing additional damage." That could have been the cause of my right foot and leg numbness - but there was a general worsening of all symptoms, as if the clock had been turned back to the first attack in 2007. It sucked to have the clock turned back and remember how bad that was, but also showed me how much recovery and progress I had made...and will make again.[/quote]

Posted: Thu May 28, 2009 4:51 pm
by Wendigo
Needled wrote:Hi Wendigo,
My life in a sentence -- It takes me twice as long to do half as much. Then I still usually have to rest afterwards. Knowing that, I have to adjust what I do, which practically never coincides with everything I want to do. It's very frustrating. Regardless, I can still do pretty much everything, but I just know I'm going to pay for it one way or another.
As for exercise, my back is giving me a lot of problems, so that's put a damper on things. But the best exercise for me is walking. I don't necessarily walk straight :oops: and sometimes by the end of a walk my legs feel like they weigh 200 lbs each, but it is what it is. And when I can't walk outside, I use a recumbent bike. So I can sit down, watch TV and/or read when I exercise. What a deal!
N
My back gives me trouble also - can't sleep more than 4-5 hours without it locking up and sleep is so important. That's what recharges my battery! I rest at least twice a day, laying down, not even necessarily sleeping. My father at age 87 has to do this just from old age - I am only 52. Sleeping too much during the day I've learned sets up a cycle of waking up in the middle of the night, nothing to do, and wipes out the next day.

Posted: Thu May 28, 2009 4:55 pm
by Lyon
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