Physiotherapy in early stages?

[gnat]

Hiya, I am still mobile but feet are getting weaker. Diagnosed 6 months ago. I've heard using a physiotherapist regularly can be beneficial but my neurologist seems to think not. Can anyone tell me what benefit a physiotherapist was in the earlier stages, eg maintaining or even regaining a little strength for a while, reducing muscle cramps/spasms, reduced pain (I get a sore neck and back at times) aiding balance? Keen to keep active as long as I can. Thanks.

 

[Nikki J]

which mnd do you have? With ALS you can’t regain strength in affected muscles. PT can be helpful for things like balance and range of motion but you need to be incredibly careful to find one who understands ALS and isn’t going to push you to do dangerous things. The general rule is if it takes you longer than one hour to recover from any activity it was too much.

that said there was a really well done exercise study a few years ago that compared a regimen of range of motion only to ones of aerobic exercise and resistance training. The exercise and resistance people had slightly fewer falls. HOWEVER the resistance arm was incredibly carefully designed and monitored the weight was selected based on a percentage of what a person could lift one time and frequently readjusted based on what they could do as they progressed ( so most lifted less actual weight over time). It wasn’t just handing them a weight and sending them away. The aerobic exercise was a Pedal exerciser and they were given instructions about level of exertion. I think the time was 15 or 20 minutes 3 times a day.
I think that some activity is good for pals but you need to be clear on goals and the limits on what you can accomplish. Reducing pain and maybe cramps is something you probably could do

 

[KimT]

PT helped my knee to straighten out but the lady doing it was also a licensed massage therapist and used a lot of massage on my glutes, calves, and thighs. I went to another PT for my foot and he hurt it. Like Nikki says, please find someone who understands ALS.

If you can do stretching and even some easier yoga poses, it might help balance a little.

I've had to change up my exercise routine periodically. For example, I was once able to do a mile on the treadmill or walk a mile. I can't walk that far now. I get some exercise in the pool and use light weights (5 pounds) for my arms.

 

[ReginaS]

"...find one who really understands ALS" - yes! That's very important - and it can be really helpful when you find someone who knows ALS for any kind of therapy/evaluation.
We met with not only one person (hospice nurse) who thought they understood ALS simply because they had heard of it or new a definition of it. They might say they know/understand and truly mean it - wholeheartedly. No bad intention.
We mostly did range of motion exercises. Swimming/being in water (without PT) seemed to be fun and bring relief.

 

[Meyermihi]

I can strongly advocate physical activity, especially in the early stages as you are still able to move. Do as much mobility exercises as possible, including movements that are new to you. I started using my left arm/ hand more and more for teeth brushing, writing, etc., which positively impacts neuroplasticity and will come handy as my right arm further deteriorates. Morover, my experience with regular cardio-vascular exercises, frequent stretching and regular strength exercises is also a very positive one. If you still can do running, cycling, or rowing (in the gym), do it, it also helps mentally. Let your experience and that of fellow sufferers guide you more than the words of a neurologist who is unable to help anyway.

 

[Nikki J]

I will reiterate that people with ALS need to be careful and preferably work with an ALS expert PT. If you push too hard ( especially if you are lower motor neuron dominant ALS) you can do permanent damage. I left my toe walk ability in the spin room literally lost it at the end of a session and I had it before. I have heard similar anecdotes from other PALS. My experience was I got away with it until I didn’t

 

[affected]

I agree - there is a huge case for remaining active as long as you can, but understanding how different ALS is when doing this is important. I watched my husband push and lose abilities.

 

[Jimi]

In my experience, regular exercise like I had done all my life was helpful in keeping me mobile ,for as long as possible. My progression seemed to worsen as soon as I stopped using a muscle. Of course there was no getting around the fact that no matter what I did I would not get much stronger .

 

[KimT]

You have to also weigh the psychological benefit from exercising and getting sun every day. I go in the pool even on days that I'm tired or sore. I walked as far as I could as long as I could. I'm lucky I'm still walking at all.....but I am.

 

[affected]

Definitely my Chris would push himself too far, then pay for it with days of fatigue, followed by a noticeable loss that was never regained. There is definitely an important balance that needs to be struck, and I would never advocate for just stopping doing anything at all.

 

[ShiftKicker]

As others have said, it depends on whether your MND affects upper or lower motor neurons. I would hesitate to tell you to push yourself to fatigue (which is how those without MND usually exercise), but I would 100% recommend you do see a knowledgeable physio or physiatrist to maintain range of motion. They can assist with continued flexibility, circulation and supported exercises to assist with balance. One red flag though would be a physio who thinks you could regain strength or you can exercise to improvement- that would be a sign you need to try someone else.

While your strength and muscle control may be affected by MND, it's still very important to make sure your circulation and joint mobility is maintained- whether passive or active exercise depends on your capabilities and how your MND is affecting you. Depending on current deficits and strengths, you can work with a knowledgeable physio to keep moving as long as possible and adjust your routine based on your responses.

 

[Nikki J]

This may be helpful to read Exercise and ALS