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kenschatz

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PALS
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US
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AZ
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Scottsdale
I have been going to a workout place, three times a week now. I started 4 weeks ago. It is 100 degrees in the room, it with a lot of elite athletes. It's hard to describe, but I would say it's mostly calisthenics, and stretching. It's about an hour or so, he starts with a motivational "lecture" which is extremely helpful. I am the only one in the class with obvious disabilities. i cannot talk, I'm on a feeding tube (PEG), and have a weak left side. I've also obviously been losing muscle tone. I am breathing hard (FVC is about 65) and am drenching wet wet when I leave. He gives me a chair that is next to me, if I need to take a break, and also sit in it to modify some of the moves - he shows me what to do in a chair to modify them. I do use an AFO on left foot, but leave it in locker room when I go in. My wife loads me up with water through the tube before I drive home.
Point is this, I am feeling better! My wife tells me I look better too, Yes I go home and take a shower, and nap (hook up BIPAP trilogy) and sleep for a few hours.I have better balance, walking better, and definitely have a better attitude! I actually look forward to it. I think it's helping with my breathing too, I'll get results from next clinic, and let you know. My quality of life feels better. Just wanted to put it out there.
 

bigmark1954

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1,012
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UT
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taylorsville
I have an exercise room in my basement. I resistance train 3 times a week, and try to do lite cardio 6 times a week. My cardio consists of 15 mins of brisk walking on the treadmill (hanging on for dear life), and 15-20 mins on the Airdyne bike(30 mins total per day). My resistance training lasts about an hour and is composed of bench press, military press, standing curls, and upright rowing. I warm up a few mins and do crunches and stretching.

I try not to over do the weight training. If I can't do 3 sets of 10 repetitions per exercise, I reduce the poundage.

Compared to what I was doing 3-4 years ago it is pretty pathetic (70lbs on bench, 60lbs on curls, and 60lbs on military press).

I can't speak legibly so I won't go to a public gym. People think I am dying when I try to speak, they might be correct in my case.

I firmly believe that my exercise and training are keeping me in the game, walking and doing chores and stuff. I dig the endorphins from a workout.

Many people on this forum advise to not weight train or vigorously exercise. But for me it is the only way to exsist....yes I pay a price the next day, and sometimes I have to crawl out the weight room....I will fight to do it as long as I can.
 
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KimT

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Nov 18, 2014
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PALS
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08/2015
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The Beach
I think the mental benefit from exercise may, in some cases, evoke chemicals that actually make you feel better physically. Not just endorphins but other brain chemicals as well.

In December we had a beautiful, sunny day in the high 80s. I walked for a mile on the beach (I hadn't walked that far in a long time.) I got sunburned and sweat. I slept better that night that I had in a year.

I say go for it.
 

affected

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lala land
I think one of the biggest issues is that there is not a regime that will work for each PALS.

The key seems to be the amount of recovery it takes.

I would add that another key may be what you had done before.

Mark gives a good example - he does what constitutes a pretty big workout for him now, but it's nothing like what he once did. I was interested Mark, in how well in tune you are with your body, and that you do not insist on what you should be able to do. You adjust every time according to what you can do, so that you get the benefit of the exercise rather than expecting to achieve a particular weight to lift or whatever.

We have talked about exercise before and it's a difficult one, because we tend to talk in generalities.

For my Chris who was strong and always incredibly active, I think weights would have been a disaster because he had never done that kind of exercise before (his exercise was done by working all day in a cafe and then working around the property - very different to weights in a gym environment!)

He was told to do push ups, he managed to push up once, then face planted. This was a couple of months after diagnosis.

There were lots of exercises that may have helped him for some time, but he couldn't stick to doing anything - we had some kinds of equipment loaned that he asked for, but he would just leave them sitting beside him every day.

I can't believe how much I've learned about this disease, particularly about how differently it affects every person, here since Chris passed. The collective sharing of information here is just so powerful. And on this topic, yet again, we discover just how differently this disease affects every single person. No wonder it is so hard to solve and cure, it's almost like 100 diseases rolled into one!
 

Buckhorn

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PA
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Small town
Kenschatz, if you think the exercise makes you feel better, then continue with it as long as you can. I always tell my patients that walking is the most functional thing you can do, so in my husband's (Dave's) case, we go for walks at least twice per day. He needs a rest break now and then (during the walk) and he often uses a straight cane for support. He usually needs a nap once per day, and is discouraged by his fatigue. Resting so often is a new thing for him, as he was always so active and strong. We also have an elliptical trainer at home, and Dave uses this a few times per week x 25 min. at a time. I sometimes think he is overdoing it a bit, but I have to let him feel what his own body is telling him. Mentally, he feels the great effects of the endorphine release from the elliptical, so I have to weigh that in as a positive as well. I also agree with you kenschatz that exercise will help you to maintain or possibly improve your balance. Just make sure you are well hydrated before and immediately after the workout. 100F is a harsh environment to agressively exercise in for anyone!
 

bigmark1954

Very helpful member
Joined
Jan 31, 2014
Messages
1,012
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PALS
Diagnosis
01/2014
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US
State
UT
City
taylorsville
I think one of the biggest issues is that there is not a regime that will work for each PALS.

The key seems to be the amount of recovery it takes.

I would add that another key may be what you had done before.

Mark gives a good example - he does what constitutes a pretty big workout for him now, but it's nothing like what he once did. I was interested Mark, in how well in tune you are with your body, and that you do not insist on what you should be able to do. You adjust every time according to what you can do, so that you get the benefit of the exercise rather than expecting to achieve a particular weight to lift or whatever.

We have talked about exercise before and it's a difficult one, because we tend to talk in generalities.

For my Chris who was strong and always incredibly active, I think weights would have been a disaster because he had never done that kind of exercise before (his exercise was done by working all day in a cafe and then working around the property - very different to weights in a gym environment!)
There were lots of exercises that may have helped him for some time, but he couldn't stick to doing anything - we had some kinds of equipment loaned that he asked for, but he would just leave them sitting beside him every day
I can't believe how much I've learned about this disease, particularly about how differently it affects every person, here since Chris passed. The collective sharing of information here is just so powerful. And on this topic, yet again, we discover just how differently this disease affects every single person. No wonder it is so hard to solve and cure, it's almost like 100 diseases rolled into one!
********************************************************
I try to listen to my body, but push my self to the limit often. As you stated, there are a lot of behind the scene issues.

For example.....I have to wrap my wrists with supports to even handle the weights I am using(especially my left wrist because of weakness). Also, all resistance movements are done seated or on a bench, I do barbell curls standing because it works my pythons better. On bad days, I have been known to tip over doing standing curls, so I stand close to the wall so it catches me if I loose balance.

I have to hang on to the treadmill...it would be disastrous if I didn't. I have bad days where I may abbreviate my workout in accordance to how I feel. The poundages I listed are maximums that I can do in my current dilapidated state.

I fear I would just turn into a couch potatoe, and loose all my strength if I didn't workout. I have always worked out, 5 years ago I could do sets on the bench press at 200lbs. So....I am kinda wimpy now, or is it gimpy? With that being stated, I still am somewhat formidable for a 61.7 year old man with a terminal disease.
 
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mpnatx

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Joined
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Messages
368
Reason
PALS
Diagnosis
11/2014
Country
US
State
Texas
City
Austin
Before I was diagnosed, I worked out regularly. Had the six pack and was able to do all the weights. One of my sons is a trainer and advised me on my workouts.

It was during working out that I discovered weakness which led to the diagnosis. Every once in a while, I'll pick up a 10 lb. barbell and see what I can do. Or, try and do crunches and pushups.

Can't do one pushup anymore. The dumbbell is to hard and the crunches are impossible. My abdominal muscles immediately cramp severely.
After I attempt to do these exercises, The fasciculations and cramps come on strong. But, I still occasionally try!

Kudos to all you guys that can exercise! Makes me happy and gives me hope. I'm envious!

I still go to the shop four times a week and do a lot of walking (with my cane) and by the end of each day, I'm pretty worn out.
Marty
 

bigmark1954

Very helpful member
Joined
Jan 31, 2014
Messages
1,012
Reason
PALS
Diagnosis
01/2014
Country
US
State
UT
City
taylorsville
Before I was diagnosed, I worked out regularly. Had the six pack and was able to do all the weights. One of my sons is a trainer and advised me on my workouts.

It was during working out that I discovered weakness which led to the diagnosis. Every once in a while, I'll pick up a 10 lb. barbell and see what I can do. Or, try and do crunches and pushups.

Can't do one pushup anymore. The dumbbell is to hard and the crunches are impossible. My abdominal muscles immediately cramp severely.
After I attempt to do these exercises, The fasciculations and cramps come on strong. But, I still occasionally try!

Kudos to all you guys that can exercise! Makes me happy and gives me hope. I'm envious!

I still go to the shop four times a week and do a lot of walking (with my cane) and by the end of each day, I'm pretty worn out.
Marty

I have always had a "one pack". My workouts have to be done at the end of the day,2-3 hour before bedtime.
It is more difficult, but if I did it earlier in the day I would be completely wiped out all day.
 

azwxman

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Joined
Jun 15, 2014
Messages
147
Reason
PALS
Diagnosis
06/2014
Country
US
State
az
City
tucson
ken - glad that workout is working for you and ever better that you're feeling some good come from it.
I wish I could do some of what you guys are doing, but my body won't even let me get started. can't stand, can't lift, can't do a pushup or a crunch, much less a situp.
I held my 2 y.o. daughter for about 10 minutes yesterday and my arms were shot for the rest of the day...still pretty weak now.
so I envy you a bit, but, as we've heard before: it is what it is.
but get on down with your bad self...mark, too.
:)

mark
 

kenschatz

Active member
Joined
Oct 1, 2014
Messages
41
Reason
PALS
Diagnosis
07/2014
Country
US
State
AZ
City
Scottsdale
Hey Mark,
fellow Arizonan, yeah - I'm not there yet.. it seems like there are a wide array of ideas on exercise, and about everything else with this disease. like you said - it is what it is - meanwhile I keep attempting to find the positives each day. Hang in there!
 

Nikki J

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Mar 22, 2012
Messages
10,459
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PALS
Diagnosis
04/2014
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MA
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Boston
I am wondering you people who can do fairly strenuous exercise without permanent consequences, do you have a good amount of UMN involvement? Would you consider yourself umn dominant? I am lmn dominant and had permanent consequences from one episode of slight overexertion ( I always stopped as some as I felt it becoming even a little difficult I continued on for 5 minutes more only) I have never regained what I could do when I started and could not 45 minutes later.
 

kenschatz

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Messages
41
Reason
PALS
Diagnosis
07/2014
Country
US
State
AZ
City
Scottsdale
Nikki,
not sure of the difference of UMN and IMN?
 

Nikki J

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Mar 22, 2012
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PALS
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04/2014
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MA
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Boston
Lmn is lower motor neuron. My primary symptom is weakness. Upper motor neuron is manifested with hyper reflexes, babinsky Hoffmans spasticity. If you have ALS you have both to some degree but it can be more one or the other.
 

bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
This is a good topic and glad people are talking about it. From everything I have read and heard, it sounds like light/moderate exercise daily is a good thing....nobody really seems to know though what the right amount is. Oddly enough, I ran this question by neuro last time I saw him re: over-exertion although he really didn't say doing a certain number of reps to the point of fatigue would be harmful. That said, another doctor I see stresses to me alllll the time NOT to over-exert because the neurons are already weak and dying, and that over doing it would hasten the process. I believe that, and will not over do it.

As for me, I have found the living by the slogan "just keep moving" is working best for me....if I can left my arm or arms up and down a few times then I do it. Same for any other part......I just keep the brain-nerve connection maintained and send the fluids to the muscles when exercised.....I cannot see how this could not be beneficial....if for a "normal" person, if you don't exercise you will naturally atrophy.
 

Willow

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Joined
Dec 28, 2006
Messages
102
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DX MND
Diagnosis
04/2012
Country
CA
State
East Coast
City
NA
This is a great topic and one I am struggling with. I find very much if I overdo things that I pay for it and have to take time to recover but I enjoy doing the walk or exercise. Just not able to do as much anymore but also don't want to do nothing. Trying to find a good balance.
I have been diagnosed with a form of SMA.
 
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