ALS & Exercise Study

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GregK

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Joined
Jan 29, 2013
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2,775
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PALS
Diagnosis
11/2012
Country
US
State
CO
Yep!

Like most of us tell people:
- Moderate exercise & stretching = Good
- Hard exercise = Bad

:)
 

wishmobbing

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Dec 5, 2017
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707
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Lost a loved one
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07/2017
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DE
State
Germany
What no one told me yet is how to motivate my PALS to exercise and stretch. Reason, threat, begging, nothing really gets him moving. I know he's exhausted, but he's always been lazy when it comes to taking care of his body. I'm trying deals next: "If you let me strap your legs in the exercise machine, I'll cook dinner." (Not that I'm not doing this anyway.)
 

KimT

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Joined
Nov 18, 2014
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3,196
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Well, I was told not to exercise and to gain 30 pounds. I was a runner. I was an athlete. I was given the wrong advice, especially for my quality of life. Now, a couple of years later, I only have 20 extra pounds. I walk 1/2 mile on the treadmill first thing in the morning at 3.2 miles per hour so it only takes about 10 minutes. When the pool is warm, I straddle my noodle and peddle around for about 30 minutes moving my arms.

During my time off from exercise (over a year) I lost a lot of muscle and balance. I thought it was normal progression. Some of it was not. Now I can stand on each leg and balance for about 5 or 6 seconds. I could not do that before I started the treadmill and it took about 4 months of walking every day. I realize I will progress and not be able to do this. I plan on getting some weak rubber bands to do easy resistance for my legs. I don't trust free weights or machines.

I also discovered I had much more energy to feel like doing this when I went on the paleo diet. So on January 1, I will be following a 100% organic, paleo diet for 12 weeks.
 

Nikki J

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Mar 22, 2012
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7,243
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I was at Dr Maragakis's presentation of this at the MNDA. The participants were closely monitored and their routines adjusted to accomodate their declining capabilities. The resistance people had the amount of weight determined by a percentage of the maximum they could lift / perform exercise with one rep. Over the course of the study this was recalculated based on ability and a rising percentage so one might lift less weight over time even if the percentage of maximum rises

I think it is really important to work out a program that is the right balance. Someone in the audience commented they had done a study and their PALS did not do well with exercise. It made me wonder how their program was structured

I think this is really encouraging but worth discussing if your clinic has a good PT. Otherwise take it upon yourself to readjust your program to continue to benefit if your abilities change
 

ALSDestreza

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Joined
Dec 26, 2017
Messages
4
Reason
PALS
Diagnosis
12/2017
Country
US
State
CA
I was thinking that Tai Chi may make a good addition to my exercises.
 
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