exercise or not

[CindyM]

If overdo on one day, it takes the next complete day to get to feeling back to where i was the day before. Is that familiar to anyone.

This is what I am complaining about! And it does not take much to "over do" things. A 1/4 mile gentle walk on flat pavement requires a day to recouperate. When I was in Physical therapy we tried light weights but the pain the next day got on my nerves and evertually I got to the place here I was too weak to even lift 5 lbs. In November of '04 I was doing 3 reps of 10 using 15 pounds and by April I was down to one rep of 10 with a 5 pound weight. That was when the PT folks asked me to stop.

I'm going to start again, though. I think it might help with my lack of energy.

 

[Shasta]

The one thing we all must remember....evercise is never easy. Even the most dedicated people who exercise take days to recouperate after a day of hard exercise. I use 10-15-20 lb dumbells to exercise with. It's not he amount of weight you use but, rather, how you do the lifting. Correct lifting will wear anyone out no matter what the weight.

Obiously, the point to watch out for is when exercise becomes detrimental to the ALS. I've got a couple phone calls out to agencies concerning exercise for ALS but for the time being, I'd follow some of the earlier advise in this sting and advise from your doctors. As with symptoms, the exercise theories seem to be very many and in so many directions for different people.

When i get more information, I'll be more than happy to pass it on.

God Bless
Doug

 

[Ray Turner]

:-DI was diagnosed last year and mother died of this 20 years ago. My mother's case went very quickly, but mine is not. What I need to know is whether overworking and feeling tired next day is good or not good. Does anyone have any ideas or experience in what is best. Does it make a difference/ I know about walking everyday. I would appreciate any answers

I was advised to exercise 3 times a week. My physiatrist suggested that I do not over work the muscles, but concentrate on range of motion and flexibility exerecises so that I don't sieze up. I also have a deep tissue massage twice a week. I do not know if this helps, but it sure feels good. Ray

 

[pmbenb83]

Ray,
That's funny that you mentioned getting massages. Just this evening, my husband and I talked about him trying massages to help with his cramping muscles. He has severe cramps now in his neck and jaw, which produce severe headaches. He has cramps all over, but these are really hard to control and stretching doesn't help at all.

As far as working out, he hasn't been able to find a good pace for himself. He used to be a weightlifter and benched 300+ pounds and now is frustrated because he can barely lift a 2.5 pound dumbbell. The doctor told him to do what he can, but everytime he tries he seems to really regret it for the next few days. His legs are still very strong, so for now we'll just go for walks, and he will definitely give massages a try.

Take care,
Pam B in VA

 

[Shasta]

Because I am a person that believes in exercising, I've been talking to a doctor about exercise and ALS.

As you might assume, information is tough to come by. The most consistant statement is that if you feel tired after a day of exercising, it means you worked too hard the day before. This doesn't mean that you shouldn't continue to exercise but rather, just reduce the exercises you do. It means that you've overworked yourself just like an athelete overworks themselves after a hard workout.

I asked if exercise accelerates the progression of the ALS and the answer was NO. However, that doesn't mean that just because someone can exercise doesn't mean that caution should be thrown to the wind. Cells that die in muscle attachments weaken the connections and this might cause dislocated joints. Balance which is always a concern should be taken in to consideration. No one wants to fall just because they are exercising.

Because of the diaphram weakening, the body cannot exhale the CO2 from the body in proper amounts. This is thought to lead to some of the feeling tired the next day.

Stretching exercises are highly recommended and I'm having some exercises sent to me to pass on.

The main point was to NOT over-do yourself. If you feel tired the next day, reduce your exercise the next time until you find that optimum amount of exercise to keep you happy with your workout. Most of all.....talk to your physician about your routine and make certain you are safely able to handle what you do. I stressed a number of times as to whether exercise quickens the progression of ALS in any way and I was told NO each time.

Maybe people could discuss what they do for exercises. This might help others get started. I just want people to realize that exercise is not JUST for competition. Exercise makes a person feel better in themselves for achieving an exercise goal. Never take exercise for granted.

God Bless
Doug

 

[joelc]

Doug, I am not sure if I agree with what you have been told. If I over due it and hurt muscles they don't heal, so I find myself at a new (lower) level. I never recover.

Also, stetching (for me) will bring on muscle cramps guaranteed! I still try to carefully stretch, but without fail I get severe cramping.

 

[Shasta]

Right Joel.....You hit the premium words right on....Not to overdo it. Start out at a very low end. Someone that's been exercising already will know their limits. Beginners won't. There is no macho-ism to staying in shape. I remember in the late 70's when women would go jogging with me for the first and usually only time; They'd show up in tights and leg warmers(remember them?) and I'd have to stop them right there.."We're not going out on a fashion show." Never overdo it.

Simple exerciises might be as easy as lifting small bottles of water for bicept curls. Then lifting them over your head for shoulder exercises. Then using both hands,lift a bottle over your head and drop it back, bending at the elbows so the bottle drops behind the head and lift it back up working the tricepts. Small waterbottles make excellent weights. The bottles were made to fit in your hands.

Doug

 

[MtPockets]

When I first started having symptoms I was sent to a Physical Therapist. After several visits we found out that the muscle spasms increased and the CK levels went very high even with moderate exercise. It was explained to me that as the spasms increased the muscle tissue rubbed against itself and went into solution in my blood stream. In essence destroying muscle tissue and causing atrophy, by the very activity of exercising.

To make a long story short, I was told NOT to exercise, because it would only speed up the muscle deterioration. If I have a very active day now, I pay for it with at least 2 days of spasms increasing and having to stay in bed. Of course I am in a wheelchair all the time now, so when I say active, it means using my arms and body in physical ways I normally do not use them.

I know each of us has to make our own decisions on how we handle this disease process. I am only trying to give you another point of view and hope that the decisions you make for yourself actually help you and not hurt you in the long term.

I hope everything works out well for you.

God Bless
Capt AL

 

[Shasta]

I wanted to start this post with an apology. Because I don't have ALS, I was thinking of exercise not as a person with ALS. I was thinking that exercising should be in order to become stronger when in fact, after doing research from doctors, exercise should be taken as a stretching exercise to keep the body from atrophying.

Decrease in muscle strength leads to a decreased use of the corresponding joint and poor posture. Immobility initiates inflexibility, which instigates pain. Range of motion (ROM) exercises can help reduce this pain.

Benefiuts of ROM
* Reduces pain
* Helps prolong independence with movfement
* Prevents muscle contractures
* Makes daily activities easier
* Makes caregiver tasks easier
* Reduces muscle spasms
* Improves ability to breathe

Tips for ROM
* Do NOT perform a ROM exercise to the point where it increases pain.
* Do differentiate between a stretch (good) and pain (bad).
* Position or bracing may assist with ROM.
* Special caution must be used for unstable joints.
* When it is unsafe or fatiguing for someone to do the exercise independently, it is recommended that a caregiver perform the exercise.
* If a ROM activity causes the patient or caregiver discomfort, it is recommended an OT or PT instructs exercises tailored to their specific needs.

Tips for Caregivers
* Support the joints as best as possible.
* Bring the limb close to your body.
* When able use your body (weight-shifting) vs. your arms to gain motion.
* Keep good posture.
* "Listen to the patient.
* May be easy to do in conjunction with another "care giving" activity.

This information provided by: Christen King, PT/Wishard Health Services, Indianapolis, Indianapolis.

I'll try to describe the stretching exercises displayed in the paperwork I received as I was asked to not show their proprietory pictures on line.

 

[Shasta]

ROM exercises

Because I can't use the pictures from the PT I got them from, I'll try to describe each one explicitly.

1.
* Lie on back with head and neck supported (on the ground or flat surface).
* Turn head to right, then left (rolling on the back of the head).

Special instructions:
-Stay in painfree range.

Perform 1 set of 3 repetitions once a day.
Hold exercise for 30 seconds.
Rest 10 seconds between sets.


2.
* Lie on back with head supported (on the ground or flat surface).
* maintain proper posture while laying down.
* Bend neck sideways, moving ear toward shoulder.
* Return to start position.
* Bend neck sideways in opposite direction moving ear toward shoulder.

Special Instructions:
-Move in painfree range.

Perform 1 set of 3 repetitions, once a day.
Hold exercise for 30 seconds.
Rest 10 seconds between sets.

 

[Jerry1]

Hi everyone, This is my first post. I was diagnosed about 5 years ago. I don't remember not doing physical exercise. I have been going to the same place for the last 4 years. Three days a week is in a therapy pool that is above 90 degrees in temperature of the water. My physical therapist is a firm believer in "if you are tired, quit" or "if it hurts, stop and do something else".
When I first started my left arm was out of my shoulder joint almost three inches. My right arm was not as bad, only about an inch out of joint. Within the first year my arms were back in place, where they should be. I have never been able to lift weights. But under water I can touch my left shoulder with my right hand. Range of motion exercises are done with me laying on the surface of the water, suspended by floats.
Many of the exercises I have done have been to improve balance and core strength. Some of them are moving like I am bicycling while vertical in the deep water. Walking both forward and backwards along with sideways in 4 foot of water. Knee bends and ankle lifts and possibly many others.
I can't say about others but it seems to have really helped me. I go to a private clinic as an out patient and all visits are paid for by Medicare.
Jerry

 

[brooksea]

I have to agree with Joel. If my husband over does it, he does not recover and his progression accelerates. Muscle atrophy advances quickly thereafter.

Gentle range of motion exercise has been suggested to keep from getting "frozen."

 

[CindyM]

Hi Jerry and welcome to the forum. Sorry about your DX but glad you decided to join us. The warm water sounds very soothing for sore and crampy muscles. Thanks for sharing. Cindy