PLS'ers - How much exercise?

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Reingrey

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How hard do you push yourself in terms of exercise, and what happens when you over do it? A year ago I could walk 6km, and I would be tired, and it would be hard to do it two days in a row. Now I can only do 3 km at half the pace, and by the end my legs are like stiff sticks. And if I try to do that two days in a row, I become "I'm so tired I could cry" tired for a few days (so I don't do that anymore).

I've read that for ALS, over-exercising can speed up progression, but what about PLS? I've heard movement is important for PLS, and I've read you have to "use it or lose it". So how hard should I push...would I be better doing 1.5 km a day, or 3 km every other day, or every third day?
 

lgelb

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A representative statement from the medical literature re PLS: "Attempting to overcome severe spasticity with physical therapy alone may result in torn or strained muscles or tendons. Hence, physical therapy that causes pain should be avoided or modified. Other modalities, such as massage or pool therapy, may provide symptomatic relief."

The consensus is that exercise to pain or exhaustion is not a good idea in PLS or ALS. The focus is on stretching and strengthening to prevent contractures and preserve range of motion, but not on endurance per se.

Another quote in re ALS that applies as well to PLS:

PALS should keep track of signs and symptoms of overuse (eg, inability to perform daily activities following exercise due to exhaustion or pain; a reduction in maximum muscle force that gradually recovers; increased or excessive muscle cramping, soreness, fatigue, or fasciculations) via an exercise log that the physical therapist can review. In addition, PALS may be advised to exercise for several brief sessions throughout the day versus completing aerobic or resistance exercises for a sustained period of time, with sufficient rest periods in between exercise sessions.

So multiple shorter walks during the day rather than a long one that stiffens your legs is likely more the way to go, and I would also work with a physio on a targeted program of home exercise.
 
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ShiftKicker

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I'd like to jump in and make sure, if you get a physio, to recommend one who works with folks with brain injuries/neuro stuff or who is willing to really learn what PLS is and work with you on reasonable and safe goals. Preferably one who understands what "progressive disease" means and doesn't try to focus on recovery, improvement (or will understand only small gains will be made) or some sort of graduated exercise program. One thing I ran into in my search for a decent physio was trying to explain the nature of the disease and then also trying to get them to understand the difference between maintaining/slowing loss of function and "recovery and improvement", which seemed to be the main goal of so many. I wasted a lot of time trying communicate this with over eager physios, so I do recommend talking about this with them right from the get-go.

I've achieved the greatest success with activities that involve range of motion, stretching and "mobility" of limbs. Cardio and strength stuff is no longer part of my routine. Not that I don't get it with normal activities- everything is cardio now! Things like recumbent cycling, swimming, stretching, yoga, tai chi are all excellent. But never do anything to the point of shakiness or pure exhaustion. It's different for everyone with regards to how much is too much, so you will have to pay careful attention to how you respond. And those goalposts may move weekly or monthly, so a log, as Laurie recommends, can be a good reference.
 

KimT

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It's also important to warm up your legs before you exercise. This can be done by taking a warm shower and gently massaging muscles you use in walking. After the walk, it's important to do stretches and ROM. If your muscles are strained, you're doing too much. Maybe take two walks per day that are shorter in duration and don't cause any fatigue.
 

Reingrey

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Thanks so much @lgelb, those links are very helpful. I think that inside I know I should do smaller walks more frequently, but I’m still in denial because I want to be able to do the longer distances. Hiking holidays were my dream vacations and it pisses me off that ai won’t be able to train my way back to doing them!
 

lgelb

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Think about places you could do short hikes with longer segments using other forms of transport, e.g. car, trains, monorails, lifts so you can still see the sights.

Of course, you'll have more endurance on flatter trails, and, over time, walking poles or an outdoor-type rollator (bigger wheels, adjustable-height handles) might increase your distance as well.

The comments above about specialized PT and relaxing your muscles before putting them to the test are both on point.
 

Reingrey

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Thanks again, @lgelb. I'm having EMG/nerve conduction studies done next week by a physiatrist (I'd never heard of that term before!) and his office also provides PT, so I plan to ask him about developing a PT program that is appropriate for this condition. My previous experiences with PT on these issues were uninspired because I didn't know what was wrong, didn't have a diagnosis, and they kept assuming it was arthritis in my knee.

I do use trekking poles on uneven ground and snowy roads, and have been eying things like the Alinker for increasing distances...my walking is also an important social time (local girls walk-and-talk) so I want to keep that up as long as I can, but without hurting myself or making things worse.

Right now I'm only taking a single low dose baclofen (5 to 10 mg) at night to keep cramps at bay a bit. Would it be useful to add a daytime dose on walking days to reduce spasticity resulting from walking? My neurologist told me to discuss dosing with my GP, and I have a tele-appointment with him later this week.

@ShiftKicker , I will have to resign myself to not being in recovery mode either (that's a very hard thing to accept, because I really WANT to recover :( ). But what you say makes sense, so thank you very much. You are so right about everything being cardio now; I didn’t realize how hard I was working doing every day stuff like showering or making dinner until I got a Fitbit a few months ago. It’s especially bad on days I do my 3 km walk - not only does my one hour slow stroll put me in high cardio mode, but every step that I take for the rest of that day (and sometimes the next) raises my heart rate considerably more than on non-walking days, I’m assuming because of increased spasticity. And I suspect that's another sign that I'm overdoing it?

@KimT, thanks for prompting me to stretch afterwards, I’m bad for not doing that.
 
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