Physical and Occupational Therapy [PT and OT]

With ALS there is a fine line between benefit and fatigue when it comes to exercise.  So for a few weeks now, I had been having PT from VNSNY [Visiting Nurse Service of NY].  Now everyone knows I had a terrible problem with VNS' home care and that is why I switched in early 2007 to Concepts of Independence, which is part of the [CD-PAP] Consumer Directed Personal Assistant Plan, which enables consumers to hire, fire and schedule our own aides.  I had a lot of trouble because VNS refused to allow my aides to fill in for each other, so every time one of my regular [trusted, trained] aides had to call out, VNS would send an aide from their pool of "fill-ins".  This usually meant I would get an aide whom I didn't know and who had no investment in me or my needs.  It's very hard to keep training aides when you cannot speak.

Anyway, VNS has good physical therapists, and this time they sent a man who worked with me about five years ago, and a woman whom I hadn't met.  The thing with Medicare and PT,  is that Medicare will not approve simple stretching and range of motion. The PT is supposed to make the patient stronger and able to be independent -- think recovery from a stroke, orthopedic surgery or accident.  Since ALS doesn't get better, it's hard to show recovery or improvement.  So just range of motion [ROM] and stretching doesn't fit the bill.  There has to be exercise.  So the PT worked me out with light weights and pushed me until I felt I was going to drop.  Every time after she left, I fell asleep for at least two hours.  I was thinking this is a good thing, because in my healthy days, I always felt tired after a good workout.  The PT said I needed to build muscle again, and she assured me she knew all about ALS.

I should have known better from this agency's nurse experience many years ago.  When I had my home care from them, I had a visiting nurse who kept calling me "lazy" and said I was "playing helpless" because I "didn't want to be independent again".  When I asked her if she knew about ALS and that it was degenerative,  she said I just wanted to use that as an excuse to have the aide do everything for me.  I had said "How much do you about my disease?",  she replied "I know all I need to know".  What followed was a letter from my dear friend [and fellow ALS sufferer] Norma Steck, to the head of the agency in complaint of that nurse, who came back with a major apology and an attitude change.  We had done the paperwork already to switch to self-directed care, so we felt empowered by all that.

I do not feel at all empowered by my new challenge with pain management.  Even though the physical therapy supervisor admitted that this new condition was due to the PT working me too hard, my neurologist is suggesting it is all a big coincidence, and tells me to take pain pills.  I want to find out what it is exactly,  and am considering asking my primary doctor to refer me for an MRI.  In the meantime,  all PT and OT has been suspended until my June botox treatment [because the most recent botox of last Friday is too soon to ask for PT again.  On to see who gives the best deal on glucosamine/chondroitin -- Vitacost, Swanson or Puritan's Pride.


Now onto researching my father's dementia and how we can slow it down.  My sister reports that his behavior grows odder and odder and more and more paranoid.  I have been putting off getting his cheek swabbed for DNA for my geneology family research.  He's so paranoid that he will think I have evil motives for collecting his DNA.  I hope we can collect it.