Status
Not open for further replies.

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
While just officially diagnosed I know dad has already been fighting with ALS for a while now. The therapists with home healthcare have dropped off for now because he is no longer showing progression. I have continued going through his excercises with him. Is excercise/PT worthwhile and helpful or are we just going through the motins to make ourselves feel better about things?:?:
 
I don't think there is a qucik cut answer to that.

If it is working/helping, do it. If it isn't working/helping, don't do it.

From what I can gather, exercise is different for everybody. Some folks react well and others don't.

I know this isn't much help. Good luck and God Bless.
 
Muscles, muscle contractions and things to think about when you have ALS: My take as a former certified personal trainer

Our muscles may seem simple, but they’re not really. There are two kinds of muscle contractions. One is called a concentric contraction. That is when a muscle is shortening or contracting against gravity or w weight. Picture a dumbbell curl.

That contraction will not build muscle. It will strengthen muscle and tone muscle but it cannot increase muscle mass. Muscle mass is increased by something called an eccentric contraction. That is when the muscle is lengthening against weight. Picture lowering the same dumbbell. When you are doing that, there are micro tears in the muscle fiber. Healing those micro tears is what increases muscle mass. For serious powerlifters, they will have someone hand them a weight with their arms flexed and lower the weight slowly to increase more muscle weight.

So when you are standing up, it is a concent trick muscle contraction. When you are lowering yourself into a chair, it is an eccentric muscle contraction. The unknown question in ALS is whether or not we heal the micro tears from that eccentric contraction. The best bet is probably no.

So exercise in ALS, unless it’s aquatic exercise which has no eccentric contractions, has the possibility of doing more harm than good. And it may be does eccentric contractions that verify the phrase “ the sooner you sit the longer you walk.”
 
Range of motion is VERY important...you keep the joints and muscles moving and help the patient stay more comfortable, and I believe it helps longevity and reduce the chance of injury or being bed ridden for longer.
 
Thank you for this explanation, especially the dumbbell part, as it helped me understand a whole lot better. I guess you could call it muscle contractions for dummies, pun intended.

Barbie, you are spot on, while exercise for people with ALS is still under review ROM definitely is not, it is a must.
 
My husband had a PT and OT come to the house once a week. After they left he was absolutely exhausted. They discontinued with that after showing no improvement due to Medicare requirements. He is bedridden and did not benefit at all. As previously discussed, ROM is essential. Not everyone reacts the same.
 
Thanks ya'll. His PT and OT dropped off as well because of Medicare requirements and his lack of progression. The excercises I do with him are basic. They pretty much consist of me raising and lowering his arms enough to give a little bit of a stretch and he barely hols on to a cane and I move it side to side and then around clockwise kind of like a rowing motin and then around counter clockwise. Like I said they are very basic. He also uses a soup can which is about a pound or a 2 pound dumbell he has and does curls and lifts to his shoulder on alternating sides. The weight depends on the day and his level of strength that day. He also has a breathing excercise tool he breathes in through and out of. I guess I will continue with these for now.
 
hjlindley I have used creatine since day 1. is there a remote possibility it may repair some of those tears during later stages of this disease. I still am doing both types of exercises and ROM. at 77 its hard to break old airborne habits.
 
It's just my opinion, but I don't believe the creatine will be of any assistance since the muscles are dying due to lack of a signal from the nerve. Until they can figure out what's happening in the junction between the nerve and the muscle no amount of creatine or other supplements will build muscle. Think of it as trying to run a motor it's not plugged in. And my concern about supplements is that there is no oversight to the contents of their purity. If the creatine is USP, the only thing it can be is hard on the kidneys.
 
I go to PT for a different reason; it tells me what part is failing. A month ago I could do the leg lifts lying on my back. 45 degree angle. 2 weeks ago my left leg barely raised. Today it didn't at all. Its just one little exercise but some of the others have gone through that cycle. It tells me what i have to be careful doing.
 
creatine was tested for ALS before I was DXed, didn't meet acceptable criteria. However, there have been three more trials since I was DXed. Apparently it must show some success. I still do 10 leg lifts everyday, both legs about 75 degrees, heel slides, with hands on counter for balance, marching in place, side stepping, and squats. Use over door pully for limited arm exercise, my weakest area.
 
I exercised before I was diagnosed and have continued to do so. My SVC has not changed. I ride at 70% to 90% max heart rate six days a week, an hour every day. My doctor has told me that there is no evidence exercise helps or hurts. At my last clinic visit I asked them what I should do between now and April, my next visit. I was told to "Keep doing what you're doing". Sadly, they have no desire to monitor my regimen as compared to my physical condition. No data will be collected, good or bad.
 
I quit ROM exercise on my wife because no matter how careful, the range was getting less and less and the pain afterwards was increasing.

She went from no pain meds to Ibiprofan, to prescription pain killers to STRONG prescription pain killers.
At that point I quit her ROM exercise completely and reversed her pain medication back down to none.

I'll take the benefits of a pain free existence/life
over ROM everyday.
 
Franklin I think you are right in this, it's all about the stage and type of progression I think.

In the early stages ROM as much as possible is going to help - not help slow progression, but help reduce the pain.

I do less and less ROM on my PALS shoulders because 1. his falls have caused injuries and they are only getting worse and the ROM is so bad they can hardly be moved, like your wife and 2. the ROM causes more pain now whereas early it was relieving.

It's adjusting as you go, and when spasticity is involved there is a point where the ROM is not warranted anymore.

I know when he loses his mobility altogether he will start to request more and more pain relief, not so much because he will have more pain but because he resists it because he wants to be mobile and heavy pain relief makes him more unsteady.

He is now only barely mobile with assistance.

I do know that you have to be so careful with what you do.
He won an argument with his son last weekend and drove his tractor for 2 hours - he had a ball, he was SO happy. But the progression in his arms this week is shocking.

At this stage, one has to weigh up, do you enjoy something like that a few more times and speed progression or do you stop and still progress fairly fast ... rock and a hard place.
 
Tillie............I was nodding my head as I read every word of your post.

It so accurately portrayed my wife's condition it's as though you were her caregiver.
 
Status
Not open for further replies.
Back
Top