Exercise and Relapses

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Lyon » Wed May 02, 2007 1:03 pm

Toyoterry wrote:I may have to adjust my training methods but I am willing to change if it keeps me working out.
Maybe this is a dumb thought but would something like a bowflex be easier on the joints than barbells?

Despite the pessimists this really is about buying time...a short time, and it seems that making it to that point with the highest level of fitness possible is just going to be for the better in the long run.
Bob
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Postby Loobie » Wed May 02, 2007 1:12 pm

Bob,

I was like your wife up until about 3 or 4 months ago. Like I said before, everything was a "test" to me to make sure I still had it all. Up until that point, the last 4 years I have been in absolutely impeccable shape and had the BMI and heart rate to go along with it. But then our pal MS showed up and it's all very new to me. I hope your wife never gets to that point because as I have posted before, my MS is really getting "real" for the first time. It was always this thing that COULD happen but hadn't yet and to be truthful, a part of me believes that my extreme workouts helped keep it bay since '01, but of course I'll never know for sure.

I hope no one feels like I am advocating that we don't exercise, just that we do it within our limits; which happen to be more restrictive now. That is sound advice for any person really, but with me, I just had to show myself constantly that "If I can do this, then it's not really affecting me". Then I got in such a rut that I wasn't even acknowledging the feedback from my body. My mind and desire not to have MS over rode my reason and I just kept pushing. With the advice of lots of people on this board, what I've really learned is that I better accept it or I'm going to spend a lot of time in the pity party room; the self pity party room that is.
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Postby Loobie » Wed May 02, 2007 1:18 pm

Bob,

You posted when I was posting! I actually have a bowflex and yes, it is a very smooth action machine. I think it will be better on my joints and since I don't have a gym membership anymore I have no choice! I haven't used it for a while since I was putting so much focus on cardio and staying lean (not to mention getting exhausted after a hard run). There are many different exercises you can do on it and it really is very versatile. I'll let you know how it feels, but since you can regulate the weight all the way to like 5 pounds resistance I'm sure I can stay with in reasonable limits on it and go as easy or hard as I want.
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Postby robbie » Wed May 02, 2007 1:18 pm

Talking about running and lifting weights on an ms sight, seems to me if you can do this still it's not making you any worse for shit sake, its ms people a progressive neurological disease remember, it makes no difference what you do just keep your fingers crossed you can do it for a long time. I know this isn't scientific but come on!
Had ms for over 19 years now.
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Postby Lyon » Wed May 02, 2007 1:32 pm

Hi Lew,
Loobie wrote:as I have posted before, my MS is really getting "real" for the first time.
Yeah, I remember you writing that the other day and honest to God, it gave me the shudders. I appreciate the oldtimers trying to wake us newbies up to the reality of what's to come but their accounts of 20 and 30 years ago are easy enough to blow off...because we want to blow them off. Hearing from another newbie realizing firsthand that it gets real....it had a deep effect, sort of a claustraphobic feeling.
Loobie wrote:Then I got in such a rut that I wasn't even acknowledging the feedback from my body.
From what I've read, you've nailed the main point. People exercising without MS can get away with and even purposely seek to ignore what their body is telling them and go past the limits. It seems the crux of the bisquit regarding the exercising with MS thing is listening to what your body tells you because pushing the boundaries is no longer a beneficial situation.

Regardless of anything else it seems logical to believe that if you're going to err one way or the other, it would be best to err towards overdoing exercise as opposed to sitting in a recliner eating junk food while waiting for MS to overtake you.

Bob
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Postby TonyJegs » Wed May 02, 2007 2:55 pm

Lyon wrote: Exercise is good for MS patients but take it easy to keep the inner heat down because heat might be promoting disability progression and keep it low impact because it seems that a person with MS's joints are even more succeptible to impact than a normal person.

Thanks Bob,
Let’s stick to this.
All things are good in moderation :); a rule of the thumb with exercises and MS – don’t over do.
I would recommend Tai-Chi (the best option), in addition to swimming and slow pace walking, but it is difficult to get a really good trainer (mean - trained in China for at least few years).

-finn

The point was that even two-fold increase in serum levels of the inflammatory cytokine interleukin-6 is bad for every MS person; it would be easy to calculate the number of miles during ‘cross country running’ or any other running, when this level (two-fold increase) will be reached.
I though that it was a clear point, but I probably miscalculated the ability of others to see obvious things.
By the way, I am very far from intention to persuade any person to change his/her believes in anything, I have no spare time or personal wish to do that, use them if they fit you.

I better tell you a story heard from my old friend. He used to live in Nairobi for long period of time, worked for UNESCO, and sometimes he used to visit remote villages to check something on proposed habitat ideas. The drivers were local guys, but they had no knowledge about cars, steering only. When truck couldn’t start or something else happened, guess what they did? They called the ‘medicine man’ from the nearest village and this man performed a ritual dance with smokes, etc around the truck. “And, can you imagine” - my friend said with amusement: “sometimes it worked!”

PS. I don’t care about sauna either, I prefer shower.
Turkey will be a part of EU soon, but could you call Turks Europeans?

Kind regards,
Tony
"All truth passes through three stages.
First it is ridiculed.
Second it is violently opposed.
Third it is accepted as being self-evident."
Schopenhauer
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Postby robbie » Wed May 02, 2007 2:59 pm

sitting in a recliner eating junk food while waiting for MS to overtake you.
lol Yea Bob ms sucks as you put it!
Exercise has everything to do with self-esteem and nothing to do with MS. Self-esteem and feeling better about yourself is huge,even bigger with MS than not,which to some degree must make the ms feel better. Just my opinion, but thanks for acknowledging my post I know it''s hard for you guys'. :)Theres a bag of chips here with my name all over it.
Had ms for over 19 years now.
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Postby dignan » Wed May 02, 2007 4:05 pm

Robbie, I think you're on the money. It makes me feel good about myself to exercise, and I do think "ok, I've got MS, but I can still do this, so I can't complain". I will cherish this experience as long as I can.

Tony/Finn, I think that the old "anything in moderation" chestnut is good advice for many people with MS. However, I think there is a distinct lack of good research on the intensity of an exercise program an its effects on people with MS. There's lots of research on light/moderate excercise programs for PwMS and it overwhelmingly shows positive effects from exercising. For instance (just an abstract, but you get the idea):



Impact of aerobic training on immune-endocrine parameters, neurotrophic factors, quality of life and coordinative function in multiple sclerosis.

J Neurol Sci. 2004 Oct 15;225(1-2):11-8.
Schulz KH, Gold SM, Witte J, Bartsch K, Lang UE, Hellweg R, Reer R, Braumann KM, Heesen C.
Institute of Medical Psychology and Transplantation-Center, University Hospital Eppendorf, Martinistrasse 52, S3520246 Hamburg, Germany.

In recent years it has become clear that multiple sclerosis (MS) patients benefit from physical exercise as performed in aerobic training but little is known about the effect on functional domains and physiological factors mediating these effects. We studied immunological, endocrine and neurotrophic factors as well as coordinative function and quality of life during an 8-week aerobic bicycle training in a waitlist control design.
]
In the immune-endocrine study (1) 28 patients were included, the coordinative extension study (2) included 39 patients. Training was performed at 60% VO(2)max after determining individual exertion levels through step-by-step ergometry. Metabolic (lactate), endocrine (cortisol, adrendocortico-releasing hormone, epinephrine, norepinephrine), immune (IL-6, soluble IL-6 receptor), and neurotrophic (brain-derived neurotrophic factor (BDNF), nerve growth factor (NGF)) parameters were compared from a prestudy and a poststudy endurance test at 60% VO(2)max for 30 min.

In study (1), lowered lactate levels despite higher workload levels indicated a training effect. Disease-specific quality of life (as measured by the Hamburg Quality of Life Questionnaire for Multiple Sclerosis, HAQUAMS) significantly increased in the training group. No significant training effects were seen for endocrine and immune parameters or neurotrophins. In study (2), two out of three coordinative parameters of the lower extremities were significantly improved.

In summary, low-level aerobic training in MS improves not only quality of life but also coordinative function and physical fitness.

Pubmed URL
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Postby Lyon » Wed May 02, 2007 4:13 pm

Hi robbie,
Sounds like you and I both have the same exercise program. When and if I want an extra strenuous workout I carry the extra weight of the TV remote control to the fridge and back when I grab a beer..

Thankfully they're putting less and less potato chips and more and more airspace in the bag so that the trip back to the couch isn't quite so strenuous!
Bob
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Postby Toyoterry » Wed May 02, 2007 10:59 pm

Maybe some people think that exercise has nothing to do with MS but remember eventhough we have MS, we still have the same risks as everyone else when it comes to obesity and cardio problems. I live in the U.S. and all you have to do is glance around you when you are in a crowd and see for yourself what a sedentary life is doing to us as a people. We need to get off the fast food, away from the TV and try moving our fat asse more. To state that exercise is for one's vanity only is to deny both scientific evidence and our own eyes. I know there are many people who are unable workout because of this retched disease, my older brother was one such person. My heart goes out to everyone of them. Longitudinal studies have shown that for most people this is not the case. Thankfullly, most people can find an execise that suits their symptoms.
My humble opinion only, please take it in the positive spirit that it was meant.
Terry
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Postby finn » Thu May 03, 2007 12:28 am

Tony,
I'm glad at least Lyon is able to interpret your posts the way you think they really should be interpreted :-)

Dignan,
thanks for sharing another interesting study. IMO, when done the right way, exercising could help many MSers. The obvious problem is that we are individuals with individual abilities and needs.

Be well.

-finn
"The great tragedy of science - the slaying of a beautiful hypothesis by an ugly fact.” -Thomas Henry Huxley
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Postby Loobie » Thu May 03, 2007 4:06 am

Robbie,

I must respond to your point about it being tied up in self esteem. You couldn't be more right. That is the whole thing about "fighting back" and everything. I have myself thinking that I am "on the ropes" if I can't fight back aggressively. The whole redefining of yourself every time you have a pack of diapers to buy or every time I look at my 3 pairs of running shoes in the closet that I don't run in anymore.

For me, at least right now, the exercise question is TOTALLY wrapped up in self worth. After all, I'm not a professional athlete and am losing no money by slowing down. You are right on another front also, I feel like a schmo every time I bitch about not being able train hard because I know, in relative MS terms, I really am doing OK. But since all things are relative, I need to communicate my struggles just coming to grips with the fact that I may be going downhill. That's my therapy; get it out in the open, shine a light on it and start dealing with it.

The stuff about it becoming real was even more real this weekend. My wife and I were talking about my MS and my daughter (11 years old) came in and said "Are you going to be paralyzed?". I told her that we could never rule out that possibility down the road. She looked at me and the elephant tears started rolling. You know when your kid is really struggling with something and she was for sure, it wasn't a give me some attention cry, but a really hurt cry. It devastated me, but we also can move forward and talk more honestly about this now as well.

Even though I have known I have MS since '01, I'm really just now starting to take me and my family through the process of accepting it. It's liberating in terms of pressure relief to an extent, but it is also very emotionally draining. And Robbie, I love acknowledging your posts. They always bring the conversation back down to earth.
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Postby robbie » Thu May 03, 2007 4:24 am

Maybe some people think that exercise has nothing to do with MS

All i am saying is do what you can. To say that exercise or lifting weights can be bad for your ms is just nuts, being in shape is good for anyone ms or not . Hot nerves don't fire as well so take a break when you get hot and the bad feeling will pass but please don't let anyone tell you shouldn't exersice because you have ms, thats what i mean.
I love acknowledging your posts. They always bring the conversation back down to earth.

Thanks Loobie
Had ms for over 19 years now.
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