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Extremely helpful member
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Nov 18, 2014
The Beach
I had my first appointment with the physical therapist today. I was with him for an hour and a half and he did a thorough evaluation. He has worked with MS patients (one was there at the time I signed in) and he actually requested more information about ALS. He understood the disease but thought he and I could come up with a handout for other PTs and PTAs in his practice and in our area.

Anyway, he said my torn rotator cuff along with the tendinitis might benefit from very gentle, hands-on therapy and some of the high tech soothing devices. He agreed with the orthopedist who thought, despite a negative MRI in February, that I still might have a torn meniscus. We talked about my water therapy routine and he gave me some suggestions. He evaluated my gait and gave me some tips about posture during card games and other events where I sit for a long time. He noticed that I crossed my legs a lot and it was throwing my posture off.

After all the balance and strength testing he gave me a quick massage on my shoulders and said all his therapists were trained in gentle massage and the sessions always ended with a short massage. He also has LMTs on staff if I ever want a full body massage.

So I committed to twice a week for six weeks. Then my neurologist and orthopedist with reassess and decide if they want another MRI of my knee.

Another good thing is that he has OTs on staff and good relationships with a number of doctors in the area, including my local neurologist. He also didn't faint or gasp when I told him I used medical cannabis.

So all things considered, it was a productive and positive visit.

I also met a lady in the waiting room and noticed she was wearing a pair of Nike sneakers with a very wide toe box. I asked her where she got them and she said they were men's size 8. She let me try them on and they felt very stable. She said she was a runner and switched to men's running shoes because her toes always hurt after a run. So I'm going to Dick's and taking a look at men's sneakers. Footwear has been a challenge since I sprained my ankle in 2016. Thank goodness Amazon has free returns on prime.
Forum is acting funny- I swear I posted a reply here already.

Kim, your new physio sounds fantastic. Thorough, careful and focused on making sure you get gentle therapy. Comprehensive assessment- right down to posture changes when playing cards. That's outstanding.

All that and a new shoe recommendation too!
That sounds great! The PT I was referred to really doesn't do much besides equipment, which i find frustrating.

Do you have trouble with the travel commitment for the visits? I wish PTs came to the house instead.
Right now I'm still driving myself around. I sleep in so my appointments are scheduled for late morning or early afternoon. They are very flexible. He told me straight out that they use very little equipment and do a lot of hands on therapy. They do have some pretty interesting equipment.

If your doc writes an order for home health PT (which requires that you find it difficult to leave home, even if you still can), the HH agency sends a PT. They will not come indefinitely but can do some stuff and set you/your CALS up with a regimen. You can ask that the doc write another order as your condition changes. They won't come any more when the agency decides the justification in re potential improvement or stabilization is too iffy.

That's what gets me frustrated about PT. They will come out to the house for only a limited number of visits. At those visits, they train the CALS on what to do, then they're out. You have to get a new script/insurance approval etc. to get them to come out again. You say to ask the doc to write a new script when something changes - well that's all the time with my PALS!

I've also (unfortunately) discovered that the PT/OT pairs (because at least in my experience, they will only send them in pairs) are assigned regionally,not by condition. The ones that (2 different) home health agencies have sent have been woefully under-educated in ALS and one was downright incompetent.

Kim - I wish I could find a PT like you have for my DH. It would do him a world of good. We can still get out, but he needs a hoyer to get out of his chair - and again, most places can't accommodate that.
I've had very similar expereiences here with OT/PT. My first round only lasted about 12 visits with lots of printouts for me to continue to do these movements/exercises/routines at home. I will say that the OT was phenominal with explaining helpful hints for difficulties I was experiencing. For example, how to roll over in bed to get myself up and out without damaging my elbow and shoulder, help with dressing ideas, getting out of chair, etc.

But over time, my shoulder continued to become extremely painful. It wasn't until I proved lack of mobility in the shoulder/arm did I get a new PT order. I am back with a new PT for the rotator cuff damage. However, my nuerologist was able to find me a new PT a little farther away who has experience/specialty with ALS and other degenerative diseases. Old PT didn't quite get my situation. The longer drive is worth it! I am very fortunate to have several friends and my daughter who switch off to drive me there. I can still drive, but it is exhausting.

I only hope to loose some of the pain with this round of therapy.

Physical therapist does not understand what is required for ALS PT. After my diagnosis and before my first ALS clinic visit my PT who was aware of the diagnosis had me do a number of strength exercises. This made my legs rubbery and was before my cane purchase. I fell getting into my vehicle and had to have assistance getting up. After I got home I did some research on PT and discovered that at this time strength exercises are not recommend for ALS patients. I contacted the PT, sending her information from the Cleveland Clinic, and she said that was not the case. After my first visit to an associated Certifed ALS Clinic in another city I gave her the information that exercise should be limited to stretching, resistance, aerobic/endurance, and balance. The Clinic also recommends, “When weakness is present, only exercise those muscles not affected by the weakness (except for stretching).”
Many PTs and OTs are clueless about ALS for sure and you can not rebuild strength in muscles affected by ALS true.

Resistance training though is strength training really. A very carefully monitored and managed program may be ok. Dr Maragakis did a study I think the key is that it was very carefully managed. The strength training group were carefully assessed before the weight was assigned as a percentage of their maximum ability. They were then reassessed during the study and the weight recalculated for their new ability ( which was sometimes lower as they progressed)

One of the people who contributed to the design of the study was a neuro physiatrist who had ALS
I've been going to a PT for about 2 months, specialized in ALS and what he told me for cases like ours is that the most important thing regarding the treatment is to never, ever overexert the muscles. Strength exercises should be very well planned, of low intensity and long duration, with many breaks between routines.

For example, my right pronator teres is on the way of becoming completely paralyzed so what he does is give me a light dumbbell and I try to pronate my forearm a few times, stop for a minute, do it again, stop again... I can no longer get up depending on my position, specifically, if I need to use only my legs as support, so using some metal bars as support I do the movement of getting up and sitting a few times. Very light stuff, because depending on how it is done it can actually accelerate the disease process.

Half of my sessions are basically stretching and balance exercises. Spasticity is running wild lately and it's been debilitating, so the stretching does give some much-needed relief. I do get extremely fatigated very easily and what I found to actually help with soreness are those spiky exercise balls (picture attached), just rubbing it on the muscles. It's very very relaxing :wink:


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Getting the right physical therapist is so important!

It was easy for me, because my wife is a physical therapist who had worked with several ALS patients before my diagnosis.

I also use a physical therapist who had a family member pass from ALS.

If you don't find a PT with ALS experience, keep looking. They are out there.

Yep. Or you can gently suggest they read the info you have gathered and hope they are open minded enough to be ready to educate themselves,which I found they often are. There are some good people !
The ones I use are very trainable. They read through everything I gave them and did their own research. They deal with some progressive MS patients and MD Patients so that, at least, gave them an idea that I would have restrictions to what I could and could not do.
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