Bike trip - concerned! cause add'l muscle damage?

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papaw50

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Hello,

My husband is considering going on a 4 day bike trip - annual event w/friends. His symptoms are still only in his hands/arms (weakness, twitching, motor skills) and fatigue. When he asked his dr about going, her comment was "don't push yourself". Our concern is - would taking this bike trip cause any add'l damage to his muscles? They ride about 10 hours a day. And, also - riding in the heat is a concern. He wants to go and has said all along, he is not going to let the diagnosed of als stop him from living. BUT, he doesn't want to contribute to the progression of the disease, either.

Any one out there with als still running marathons, or taking bike trips. etc.? Any advice would be appreciated!

Another concern: he's going for a 2nd opinion to a dr. in Pittsburg, PA on Aug 16th. The bike trip is planned for Aug 10-13 - just a few days before the appt. He doesn't want this bike trip to interfere, etc. with the emg the dr is doing on the 16th.

Learning to live with als is an adventure.

My husband said he feels like he is under a microscope because I watch every little move he makes and question anything out of the ordinary. ha!

Hope this finds each and every one having a wonderful day!

Thanks!

Patty
 

gilly

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hi patty

hi patty.

i don't know all the specifics on als but i've been involved with this forum for a few weeks now (my aunt was recently diagnosed) and it seems like everyone here pushes themselves to do everything they can and enjoy life to the fullest each day. i would guess that the bike trip would be a real "mind boost" for your husband. a good thing. and if the doctor didn't say "DON'T GO" - then he probably thinks it's ok also. right? if it were me, i'd be on that bike and enjoying myself. it might allow him to forget about all of his stress and worries for a little while. sometimes stress on the mind can do more damage than stress on the muscles. and i am sure he'll be with a group that can get him rest somewhere if he feels that it's too much for him. obviously, i'm no doctor but that's my opinion.

good luck and let us know how it goes!

:) nicole
 

rbtro

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Patty,

I am new to this forum and ALS. Very recent diagnosis, and still learning. I know there are much more knowledgeable people here. But, I would just say if I was able I would go. I just get so much enjoyment of going out to lunch with a couple of buddies here at work on Mondays. This week I wasn't able because of fatigue from the weekend. I really missed going to lunch. I have deteriorated over the last three months to the point of being unable to use a walker. I appreciate the little successes like buttoning my shirt in the morning(on the days I am able). I thank God for the support of my wife. I know each day I scratch off something that I was able to do yesterday. So if he can go and not kill himself I would say go for it. I read somewhere on one of these forums about muscle "use it or lose it". I believe this is true. Every time I stop doing something I am then unable to do it. So I vote for do it if you can.

Rich
 

rcharlton

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Hi Patty,

You will soon learn that when it comes to ALS there are rarely satisfying answers.

Excessive exercise is a stress on the body but I don't think anyone can say for sure whether excessive exercise will accerate the progression of ALS.

There are some ALS patients who do limit exercise in the hopes of reducing the production of "free radicals".

"Free radicals are atoms or groups of atoms with an odd (unpaired) number of electrons and can be formed when oxygen interacts with certain molecules. Once formed these highly reactive radicals can start a chain reaction, like dominoes. Their chief danger comes from the damage they can do when they react with important cellular components such as DNA, or the cell membrane. Cells may function poorly or die if this occurs. Endurance exercise can increase oxygen utilization from 10 to 20 times over the resting state. This greatly increases the generation of free radicals, prompting concern about enhanced damage to muscles and other tissues. "

I am not aware of any study linking free radicals and ALS - and free radicals may have no affect on progression but it is interesting to note that many young PALS are typically very active people.

There are also many specialists who believe that once the progression has started, the disease will run its course. My ALS specialist advised me that there is nothing I can do that would accelerate the progression.

Having said all that - I'm and avid cyclist myself - I have a 47km round trip commute to work that I do a few times each week. I often have a dilemma about cycling into work on hot days; however, cycling is one of the few pleasures I have in life and I would not give it up for anything.

If I were your husband - I would not miss that bike trip for the world. I think the most important thing for a PALS is to feel normal "business as usual" for as long as possible.

I agree with Nicole - the emotional and mental benefits from the trip will far outweigh any possible physical effects.

Ask your husband if I can come too (just kidding!)

Good luck.

Richard
 

joelc

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Hi Patty,

I was diagnosed a year ago so still learning like everyone else.

What I have found is that my muscles do not heal. So when your Dr. said "don't push yourself" I would consider this good advise. Doing things is good - pushing is detremental. I do just about everything, but find if I push too hard it does muscle damage that does not heal so I find myself at a new level.

I am learning to take it easier and not strain myself as it does irrepairable damage.
This does not stop me from doing things though, just learning to pace myself better.

BUT, everyone is different - others will not experience this.

How does this affect the rest of you? Let's hear from you.
 

papaw50

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Thanks so much for your response - it was VERY helpful and encouraging to have "friends" who can and will give you needed advice. I think I agree - I think now after reading some of the responses, he should definitely go for it! His friends (3 other men) are so understanding and good people. I am sure they will take good care of him!

And, yes - you are more than welcomed to go with them. ha! They have a great time - they take this bike route from WV to Maryland. Camp out each night - stop at one good restaurant a day for some good food.

Actually, my husband just called from work. They've agreed to let him have those days off so he has made the decision to go.

I'll keep you posted as to how the trip goes.

Agains - thanks for your words of advice. MUCH appreciated!



rcharlton said:
Hi Patty,

You will soon learn that when it comes to ALS there are rarely satisfying answers.

Excessive exercise is a stress on the body but I don't think anyone can say for sure whether excessive exercise will accerate the progression of ALS.

There are some ALS patients who do limit exercise in the hopes of reducing the production of "free radicals".

"Free radicals are atoms or groups of atoms with an odd (unpaired) number of electrons and can be formed when oxygen interacts with certain molecules. Once formed these highly reactive radicals can start a chain reaction, like dominoes. Their chief danger comes from the damage they can do when they react with important cellular components such as DNA, or the cell membrane. Cells may function poorly or die if this occurs. Endurance exercise can increase oxygen utilization from 10 to 20 times over the resting state. This greatly increases the generation of free radicals, prompting concern about enhanced damage to muscles and other tissues. "

I am not aware of any study linking free radicals and ALS - and free radicals may have no affect on progression but it is interesting to note that many young PALS are typically very active people.

There are also many specialists who believe that once the progression has started, the disease will run its course. My ALS specialist advised me that there is nothing I can do that would accelerate the progression.

Having said all that - I'm and avid cyclist myself - I have a 47km round trip commute to work that I do a few times each week. I often have a dilemma about cycling into work on hot days; however, cycling is one of the few pleasures I have in life and I would not give it up for anything.

If I were your husband - I would not miss that bike trip for the world. I think the most important thing for a PALS is to feel normal "business as usual" for as long as possible.

I agree with Nicole - the emotional and mental benefits from the trip will far outweigh any possible physical effects.

Ask your husband if I can come too (just kidding!)

Good luck.

Richard
 

gilly

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pedal pedal pedal!

great news. glad to hear your husband is making the trip. you're right... his friends will take care of him along the way but i agree with everyone that he should go for it and feel normal because he IS NORMAL!

hope you can do something fun for yourself during those three days. as a family member of someone living with ALS, i know how draining it can be to keep the stiff upper lip. so get a massage or plan a girls night out!

keep us posted on the trip...

p.s. you guys are all so inspiring. i love coming on this forum now and then. it makes ALS feel more like a puzzle than a problem. a puzzle we're all piecing together day by day. i'll stop before i get too cheesy!

nicole
 

papaw50

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Nicole,
You're right - this forum is so comforting and so supportive! I think I'll take you up on the massage. In fact, one of my girlfriends bought me a gift cert for one for my b'day that I've never used (my b'day was in Feb).

A puzzle - good way to put it! I'll have to remember that in the future.

I will keep all of you posted on the trip.

Hope this finds all having a wonderful day!

Patty
 

emjoi

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Yeah, from observing and listening to my dad....
First off, if he is up to it then let him have one last ride. Better than him regretting it later on when he's not up to the journey. Like it or not, it's a time of doing things "One last Time".

And secondly, as someone else mentioned, the rules for his muscles have fundamentally changed. Strong exercise doesnt build up muscles, it only damages them. And he'll get tired quicker than he used to. So he should take care, not push things hard. More stops, shorter journeys.
 

TRACY22

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Ok?

Sounds like the final confirmation has not been done. I had numb fingers for 2 months but i saw a doc when my arm atrophy starter. Between this time i was doing football umpiring 4-6 games a week.

Not being a downer does the bike group have a chase vehicle so he doesn't have to keep up when tired?
 

papaw50

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Tracy,
No - unfortunately, no car will be following them. But, I told him that if he got to a point where he thought he'd done enough, etc. I would gladly come and get him asap! no hesitation.

Getting the 2nd opinion was my husband's idea - and our insurance will pay for it. From our understanding, ALS can be misdiagnosed in around 12% of the time! who knows? We can hope and pray!

Thanks!
Patty
 

TRACY22

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training

Then i would advise him to STOP all training 4 the ride and just do the ride cold. If ALS he will not be able to build up 4 this as was previously discussed. I really advise a chase car to give him options but....hey....us guys will be guys.....:-D wear helmet and take 1st aid kit 4 the ouweees..... whats that saying "pain heals,chicks love scars, glory is forever"?

ps was hubby in the military?
 

rcharlton

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TRACY22 said:
Then i would advise him to STOP all training 4 the ride and just do the ride cold. If ALS he will not be able to build up 4 this as was previously discussed.
Actually - it really depends on what muscle groups are affected.

My ALS has affected only my upper body so far and not my legs.

I've been a heavy cyclist for all of my life. Recently I switched to a recumbent bike which involves different muscle groups than with a standard bike. At the beginning of the summer I could hardly bike up steep hills - now I make it up the same hills with no trouble - average about 7-8 kms/hour in increased speed - and have cut my commute time by 1/2 an hour. There is no question I have built muscle in my legs and increased my endurance.

Now is this exercise accelerating the progression in my affected areas? Who knows. But I'm going to keep on bikin'.
 

TRACY22

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Dang

Hey Carlton, you are a freek ! :) Got another freind that has had this 4 over 11 yrs and still moving around good. Lov to hear this. Sat i tried to test ride a bike, GSXR,using my chair as collateral .......can u believe he discriminated against me JUST because i needed Duct tape to hold on!
 
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