Book on what to say and what not to say, and beware of the "miracle cure"

Listen to this excerpt from a "Today" show segment.  Letty Cottin Pogrebin is a famous feminist and co-founder of Ms. Magazine with Gloria Steinem. She has survived breast cancer.  She talks about things to say and things not to say to a sick friend, and has a new book out about the subject.  My absolute favorite line when I told a long-time friend that my long road of diagnosis had finally come up with an answer:  "Okay, so now that you know what you have, you'll deal with it" and then she followed this up with "you know, they make canes with little stools.  I've seen some old people in the neighborhood using them, and they're very cute".  I was 48 years old, facing a prognosis of 2-5 years and the last thing I wanted to look like, was a "cute" old lady.  It went downhill from there.  She followed that act with a set of emails giving me links to wheelchairs and walkers on eBay. Then, when I was dealing with the loss of my teaching career,  she dropped off a 16-page article she was required to read for her Education Masters at Queens College.  When I looked baffled she said "Here, read the article for me and summarize it.  I'm too busy and you have nothing but time on your hands.  Besides, it will lift you out of your depression and make you feel useful".  I was stunned.  The straw that broke the camel's back was when she came waltzing into my apartment one evening through an unlocked apartment door. It had been about five months since I last saw her.  She just said "hi" and sat her ass down. My aide was horrified.  "Don't you knock?" she asked.  My soon-to-be ex-friend replied, "Why?  Am I interrupting anything important?"  She moved out of the neighborhood to a fancier part of Queens and I never saw her again.  But about a year ago, I accidentally sent a blast message to all my Facebook friends, of which she is one.  She inboxed me: "It's good to see you're still around.  My teaching job is so tiring.  I bought a condo in the Bay Club and had the realtor from hell. Bye". I would do anything to have a job to be exhausted by.

There is an ALS patient who publishes a blog. To protect the author's privacy, let's call her Beth.  Well, in the course of any disease, you will get desperate enough to do anything sometimes.  Although I am following a healthy diet which I blog about in "Meat's No Treat", this is not to cure or improve my ALS.  Rather it is to prevent or help other conditions [eg. cancer, hypertension], and to take off excess weight and keep up my immunity.  The last is because ALS patients often die of infections they cannot fight off.  But Beth started blogging about a Far Eastern "practitioner" who claimed to be able to cure her with some sort of Eastern medicine.  So Beth drove halfway across the country with her husband, blogging that when she returned, she would be back to her "former life" before ALS.  I kept thinking, "does she really believe that?  If it was some miracle cure, wouldn't we all be doing it?"  There is a group of people out there who believe the medical profession is "conspiring" to keep us all sick, because they are "in cahoots" with "Big Pharma".  I subscribe to the lists of some of these people because they are believers in nutrition and natural medicine, but I don't buy a lot of their philosophies, such as anti-vaccination and avoiding cancer treatments.  And I am able to sift out the extremists, like the nut who was emailing me constantly saying he "solved ALS" , until his emails got so weird I told him I would turn the emails over to the police if they didn't stop [they stopped].  Anyway, Beth didn't get cured; instead she ended up in the hospital with some infection [probably from a weakened immune system from the car travel and/or distress at having her dream of a cure shattered].  Moral:  there is no cure -- yet, and won't be for a long time.  I am keeping myself as stress-free and nutritionally as strong as possible to prevent additional diseases, preserve what I have, and not flirt with any more danger than necessary.  Most of all, I want to stay out of any hospital !!  There are always charlatans who prey on the desperate and vulnerable.  Physicians get no nutrition training in medical school, but they have come up with cures for major diseases, with the cooperation of "Big Pharma".  It's big business and profits come before people and compassion, but that's the way it is.  There are many diseases that can be prevented by nutrition and avoiding obesity-- eg. type II diabetes and heart disease.  But once you get these diseases,  the medical profession is the only hope in most cases. 

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.