Heaviness

[His Joy]

Probably like most of us, one of my first symptons was heaviness in my right arm and leg. It has now started in my neck. Legs getting more unsteady, thankful still able to walk with a cane. I wanted to share a quote from an article my PC gave me a few months ago. "Having ALS compares to donning a full-body suit of wet cement. "
Excellent description!

Wondering if there might be suggestions on physical therapy? Have been going 3 times a week, weight resistance. Noticing really wore out the next day. Any suggestions?

kc

 

[Annie's Phil]

My wife experienced the same prolonged exhaustion after exertion. She was advised not to do strength exercises because it over taxed muscles fibers that were picking up the slack for those that had already been denervated. Unlike normal muscles, those already stressed because of the disease are not able to respond positively to being overloaded by weight exercises. Physical therapy is of great benefit for range of motion exercises, however, and hopefully you can continue getting the ROM on frequent and regular basis. ROM is especially important because of the muscle imbalances that occur as opposing muscles weaken differently, resulting in serious joint stiffness and postural difficulties.

So for what it's worth, my suggestion is to drop the resistance exercises and establish plans for ROM on a frequent and on-going basis.

Grace and peace to you, KC.

 

[Txgirl]

My wife experienced the same prolonged exhaustion after exertion. She was advised not to do strength exercises because it over taxed muscles fibers that were picking up the slack for those that had already been denervated. Unlike normal muscles, those already stressed because of the disease are not able to respond positively to being overloaded by weight exercises. Physical therapy is of great benefit for range of motion exercises, however, and hopefully you can continue getting the ROM on frequent and regular basis. ROM is especially important because of the muscle imbalances that occur as opposing muscles weaken differently, resulting in serious joint stiffness and postural difficulties.

So for what it's worth, my suggestion is to drop the resistance exercises and establish plans for ROM on a frequent and on-going basis.

Grace and peace to you, KC.

That is exactly what I was told at ALS clinic yesterday. You said it much better than I could. Resistance exercises make the muscles worse. I was told to do only ROM and rest the muscles. Make everything as easy as possible on the muscles.

 

[Nighthawk]

I've been told the same thing at our ALS Clinic by my P.T.
Not heavy exercise to tax already weakened muscles which are also in the process of atrophying as the Motor Neurons keep severing connections with such muscles.
They prefer R.O.M. exercises to prevent the joints from becoming frozen and also to avoid...contractures.

The only light exercise my P.T. told me about was to take small walks at home (~15min) to help reduce spasticity in the legs.
But...she warned me to walk as long as I can do it SAFELY (emphasis on SAFELY) without risking a fall and also told me to wear my A.F.O. while I walk (as I'm still somewhat ambulatory) to help stabilize the ankle and avoid losing balance or getting my toes stuck because of the foot drop.


NH

 

[pearshoot]

bear in mind they are now doing the first ever study on exercise. i think 60 volunteers divided into three groups. strength exercise, endurance exercise and range of motion exercise. after a specific period they will rotate through all three phases. monitored and tested. i did strenth exercise until diagnosed then slowly backed off listening to my body, never overworking it. at this point upper body 10 pounds, lower body 30-70 pounds. symptoms appeared in apr/09, short time later started strength exercise, pushing to max five nights a week and really built muscle then backed off when diagnosed. very glad i tackled it this way but it may not be for everyone especially those who never exercised before als

 

[affected]

my PALS has his first assessment with a PT next week.
I've been really hoping this PT will understand ALS clearly and be able to give a good exercise routine to help look after the muscles that are in shape, and help reduce the gradual clawing of the hands that is starting, and help him keep some fitness up whilst he is mobile etc

I'm glad I've read this here so that I'm able to discuss with them next week what kind of regime they are looking at.
I'll post back here with what they say.

Can I also ask how any of you have found massage?
I have found that sometimes I've massage my PALS and he has then had weakness in the massaged areas for up to a day later, and that has scared me off doing much massage at all. Our neurologist however told us that massage is fine. Honestly I cried, months ago after I did this lovely facial massage (before we had a diagnosis), releasing jaw tension, and he could barely speak at all until the next day. It was like the muscles were now so nicely relaxed they wouldn't work at all!

 

[jodierrn]

My clinic also suggested light exercise.it takes all that I have to pick up after my kids. Just doing what has to be done is enough for me. My legs feel as if I'm moving in a mud field.

 

[lgelb]

My husband has always found massage helpful, and we continue it as he is quadriplegic. I know of no mechanism other than how the part being massaged is handled/positioned during the massage that could account for sudden temporary weakness vs. baseline. I would just make sure that all the joints/pressure points are fully supported through your massage and that nothing is twisted, compressed or over-stretched. Have the PT watch what you do if you like -- do a quick run-through during the assessment.

 

[dragonflydi]

Massage helps my husband immensely. He has a lot of neck pain and stiffness and his head is beginning to turn and droop. His daughter is a massage therapist and she is coming to spend the summer with us which is a real blessing. (She lives in Phoenix, so our western NY weather will be a blessing to her!) She will work on different parts of his body each day and help me with his ROM exercises, which are also crucial. He started to get frozen shoulder and she worked on it when she was here in April which loosened it to a great degree. Keeping up with it is hard, but if we miss a few days, it begins to stiffen again and he experiences a lot of pain. All of this is great for his circulation, too and keeps his feet from swelling so much. Diane

 

[hjlindley]

I take Mestinom, half tab, after meals for the extreme fatigue. It was originally developed for Myesthinia Gravis, and is now generic and cheap. Just don't take it on an empty stomach.

 

[pearshoot]

for clawing fingers place finger tip edge of table, press down to limit of pain, count five, relax then repeat do 5 reps to start do all fingers, claws or not. as you do this you can increase pressure with less pain and increase reps slowly to ten. my little finger started clawing over a year ago but doing this has held it from getting worse. index finger started a little but i can stilled straighten it out flat so hasn't progessed. i do both hands at least twice a day. left hand has zero squeeze, right hand has ten pounds squeeze. happy to be able to type with one fimnger

 

[Barbie]

My husband loves massage--we had a therapist come to the house weekly for several months and he always felt so good and relaxed afterwards. my husband was a noodle afterwards but that would be gone the next day. massage helps with frozen painful joints, circulation, and ROM. (all problems for pals). I usually do ROM for him every morning and every night. . . but he would love it if I did more!

 

[Nighthawk]

@Pearshoot:

The finger exercise for the curling fingers was mentioned to me by my P.T. at the ALS Clinic.
Thanks for bring it up here on this thread.

By the way, if your FIRST finger to curl was your "pinky finger", ALS was not really the cause for this but your Ulnar Nerve, that somehow got trapped at your elbow level. I was told this by a Neurosurgeon.
ALS (in the hand) usually starts by affecting the muscle between your thumb and index finger, not the "pinky finger".


NH

 

[Txgirl]

@Pearshoot:

The finger exercise for the curling fingers was mentioned to me by my P.T. at the ALS Clinic.
Thanks for bring it up here on this thread.

By the way, if your FIRST finger to curl was your "pinky finger", ALS was not really the cause for this but your Ulnar Nerve, that somehow got trapped at your elbow level. I was told this by a Neurosurgeon.
ALS (in the hand) usually starts by affecting the muscle between your thumb and index finger, not the "pinky finger".


NH

That is interesting because the first finger to curl was my pinkie finger on my left hand. Now my pinkie on my right is starting to curl. The index finger of left hand was the second to curl. Middle finger and thumbs are ok.

 

[Nighthawk]

That is interesting because the first finger to curl was my pinkie finger on my left hand. Now my pinkie on my right is starting to curl. The index finger of left hand was the second to curl. Middle finger and thumbs are ok.

What about the muscles between your thumb and your index finger? Are those muscles gone (I mean, atrophied).
A thing you can do, to prevent further damage to your hand (as long as it's caused by the Ulnar Nerve problem mentioned earlier) is to try to keep your elbow as straight as possible. Try not to bend it too much. Also, do not rest your arm on your elbow and do not sleep with your elbow bent.

Your O.T. can also make you an elbow splint to help keep you from bending your elbow and thus, not further damaging your hand.

It also can be fixed by a Neurosurgeon (by elbow surgery) but...once they learn you've been diagnosed with ALS, not many Neurosurgeons will want to "take your case" (I speak from my own experience).

NOTE: A damage in the Ulnar Nerve (which starts in the "pinky finger) can irreversibly atrophy your WHOLE hand.
My left hand got atrophied this way but...at that time I didn't know the trick to prevent further damage and kept bending the elbow like if there was not tomorrow.


Take care.


NH