Physical Therapy for ALS

[Tomswife]

I have been thinking and reminiscing about physical therapy. After dx Tom was referred for PT. The referral from the neurologist at the clinic did not provide much specific advice. I had difficulty finding a PT provider with MND experience. I was walking the dog one day and a neighbor recommended a small practice that had one PT provider, and a great reputation. This was the right choice for Tom. The therapist called the clinic and spoke with the neurologist to understand the best approach. All therapy was one to one, no machines. We went there until it was no longer feasible. Then we switched to home PT until it was too painful for PALS.

What prompted this post was for PALS N CALS to share PT experiences. And also to share a very important article. Yes, it was written in 2018. But. It has a lot of helpful and relevant info about the complexities of ALS and physical therapy. I found it very interesting.

The article is here:

ncbi.nlm.nih dot gov
/pmc/articles/PMC6065609/

Physical therapy for individuals with amyotrophic lateral sclerosis: current insights
Vanina Dal Bello-Haas

 

[Nikki J]

My experience with both therapists and care aides is that willingness to learn is the most important thig. My sister had pt ot and st a few times the two st were awesome. Knew ALS. The first pt had her doing strengthening exercises ( 🤦🏻‍♀️) the next one said up front you are my first als patient but I did some reading and this is what I think we should do ( had a good plan). The ot also wanted to do strengthening and when told why that wouldn’t work said there is a nothing I can do here then and left.

 

[Anne827]

I go to PT and wonder whether the right exercises are being done. Pt, primary physician and orthotics for leg brace have had no experience with als patients. I feel as if I know more than they do. Very frustrating.

 

[SteveO]

Anne827
First off I'll echo what Nikki said and the fact that willingness to learn is the most important thing. Since the onset of my symptoms over four years ago and 3 witch hunt surgeries that were not necessary, I've had a lot of physical therapy that was pretty much useless in the sense of strengthening muscles. The main benefit of the physical therapy that I have had and felt that it was beneficial was range of motion and maintaining the flexibility of joints that will become painful if they don't move on a regular basis.
Given the fact that ALS is still considered a rare disease a lot of PT/OT's will have to be educated in the fact that once the nerve function is lost, the muscle function will not be capable of maintaining or increasing strength. And yes I agree with you that very often we as the patients are the educators in this instance and the ability to learn from us is very important as far as patient care..

 

[Tomswife]

As we know, there is not one ALS but many ALS manifestations. ALS is considered a complex syndrome. Therefore developing a physical therapy plan must require that the therapist have an understanding of NMD, and the goal is to preserve, enhance rather than rebuild. The therapist must know the patients body and their abilities/disabilities that they develop working with them over time. (Have one therapist dedicated to PALS). Discussions between the therapist and neurologist are beneficial.

"The prescription of an intervention plan can be challenging for the physical therapist, considering clinical phenotypes, individual prognosis and the rapid, progressive and deteriorating nature of amyotrophic lateral sclerosis (ALS). In this context, therapeutic exercises (eg, resistance and aerobic exercises) for patients with ALS remain controversial and may influence the treatment plan."


"Patients with ALS widely accept physical activity involving range of motion and stretching exercises. Resistance exercises for the unaffected muscles (or affected muscles with strength of at least grade 3 or higher) using low to moderate loads and aerobic activities at submaximal levels (ie, 50%–65% of heart rate reserve), such as swimming, walking and stationary cycling, can be safe and effective to achieve therapeutic goals. Aerobic and resistance exercises should be prescribed early after diagnosis and may be more suitable for patients with slow disease progression and those in the initial or intermediate stage of ALS."
From pub med papers

In my PALS case, he is Bulbar onset. He was prescribed hands on manipulation of his body by the PT while laying down. He also did leg raises standing, and ball lifts standing and easy squats. He did no aerobics except walking. Even after dx he found therapy tiring.

The only caveat we were given is do nothing to the point of exhaustion. Dont get too tired. Stop if in pain. Keep a journal.

 

[Nikki J]

My clinic is extremely specific if it takes more than one hour to recover fully ( return to baseline) it was too much.

historically only rom has been recommended but there was a study comparing rom , specific aerobic activity and very tightly monitored resistance training. The results showed slightly fewer falls in the last two groups and nothing else. The aerobic exercise was a pedal exerciser. I think it was 20 minutes 3 times a week at a moderate level of exertion.

the resistance training had a hand weight determined as a percentage of what a person could use for a single rep. The percentage increased during the study but the starting value was reassessed frequently so some people decreased the actual weight used as their ALS progressed during the study

 

[Nikki J]

A randomized controlled trial of resistance and endurance exercise in amyotrophic lateral sclerosis - PubMed

This study demonstrates that SROM, resistance, and endurance exercise are all safe to be performed with the specified regimen without any worsening of outcomes as related to ALS function. All three forms of exercise were tolerated with resistance and SROM exercises showing the highest compliance...

pubmed.ncbi.nlm.nih.gov

the third author of this paper was a physiatrist at Spaulding Rehab ( Harvard affiliate) she was a PALS

 

[SeaGunny]

Bricks, Bricks, Bricks and more bricks. A flat car can only handle so much of a load. My PALS has had Home Health Care or something like that. They all showed up and helps PALS do her exercises of which there are now 3. 4 if one counts a hand exercise.

I am not saying this exercises do not help a PALS. They absolutely do! But everyone is expecting the CALS to "pick up the slack" when it is the CALS who are strung out like a banjo wire! 3 days ago, I caught some kind of mild flu. Who came to help?

Sorry, You all are discussing Physical Therapy (call it OT, PT or whatever - Exercise). The PALS very definitely needs and can benefit from this. However, this is a brick in the heavy load a CALS already bears.

It is 2:30 AM, I have written pages on this topic and erased them. It was going to sound like I was complaining about work hours rather than the topic. In a way I am.

God Bless You all. Sorry we are having to deal with this. CALS / PALS need a lot more help than "How to".