Advice

[Greg Anderson]

Hi, I first noticed symptoms in early 2016. Finally diagnosed in Jan 2017. Progression seems to be right on schedule. Walking is getting more difficult and I've advanced to a cane. Along with staying active as much as possible I've had physical therapy and used Nautilus. It seems perhaps the therapy either isn't helping and may possibly be hurting....? If it helps of course I will continue but I don't want to waste precious time and limited physical energy. Any ideas?

 

[Firefighter58]

Hello Greg, so sorry to meet you here, you say your progression is on schedule, no such thing we all progress at a different rate. I have not changed now in over a year, I'm happy about that. As far as exercising goes I found the same thing. A therapist had been sent in for three weeks to exercise my lower half and I felt it didn't help just made me sore. But some it helps, again we are all different.
Al

 

[Nikki J]

As Al says everyone is different and if you search exercise here you will see lots of opinions.

My clinic has a rule on exercise/ activity. If it takes more than an hour to return to baseline you did too much.

You can't rebuild dying muscle in ALS. There is thought that trying to do so may accelerate progression. Stretching is definitely good. Cardio as tolerated is almost certainly good. Resistance work in unaffected muscles might be ok but proceed with caution because you don't know what the motor neurons are doing.

A lot of physical therapists do not know how to treat ALS. Is yours a specialist? My sister had several PTs and OTs. All were clueless. A couple were willing to learn. The rest insisted on their way. Fortunately my sister refused to do what she knew was bad for her

I have a theory ( mine only and from anecdotes) that those with mostly upper motor neuron problem tolerate exercise better than lower motor neuron dominant PALS.

Most people seem to do well with water exercise. Consider that especially if you can find a warm pool

 

[bkite]

When I got a second opinion confirmation from Dr. John Ravitts, one take home message he gave me, was that PALS have a limited amount of energy for the day. When you use it up, it's gone. And the problem is that your energy allotment for the day, is continually declining.