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Sunday, January 22, 2012

Wheelchairs -- You can't live with them, and you can't live without them!!

So the old wheelchair is gone, and the new wheelchair is in use, but I hate these new footrests.  Yes, they keep my legs straighter, because they are two separate footrests each with a guide on the side to keep my legs straight, but they keep getting messed up.  Last week, the little latch on the right footrest -- which is the one they just replaced -- that pulls the right footrest out of the way, snapped off in the aide's hand.  Then the left footrest got all out of whack.  To simplify, neither footrest goes over to the side -- the right one doesn't move at all, and the left one, only halfway.  So it makes for a real challenge when standing and transferring.  Thankfully, it doesn't compromise anything else.  I can still go all the way back and put my feet up and stretch out and sleep.  But standing and transferring from wheelchair to/from commode or bed is painful.  Luckily, the wheelchair tech is coming mid-week to see if he can fix it on-the-spot.  If not, then I have to see about getting a loaner.  The woman I used to use at one of the ALS charities is gone, and her replacement leaves a lot to be desired, so I am hoping I won't need a loaner.  Fingers crossed.

I still say that ALSTDI is the research facility to support.  They are in the process of investigating a drug called Dexpramipexole, that is showing promise both in slowing down disease progression and prolonging life, so this looks promising.  It is in Phase II of the drug trial.  I can no longer participate in drug trials, because they usually require patients in the first 18 months of the disease, so I have to wait until FDA approval, which can take years.

The other advancement has been the FDA approval of a diaphragm pacer.  You see, with ALS, difficulties in breathing are not caused by lung problems.  Rather, it is the diaphragm, which is the muscle that goes up and down.  The lungs can be healthy, but if the diaphragm weakens with the progression of ALS, the breathing is compromised and eventually it is the failure of the diaphragm that causes death in ALS.  The diaphragm pacer works for respiration like a pacemaker works for the heart.  In order to get the pacer, the patient must have a Forced Vital Capacity [FVC] of >50.  Well mine is closer to 20.  I was disappointed when I heard I am not a candidate, but I just read an article that showed me that the pacer is not life support.  I thought it could keep a patient going indefinitely, but it can't.  In the article I read, the patient still had to use a ventilator.  Also, the pacer has wires on the outside of the body and I would still have to control it by turning it on and off, and be careful when I shower.   The tracheotomy and invasive vent are still the only measures for life support and that is something I don't want to do for very complicated reasons.

I returned to the writing of my book and -- to my surprise -- wrote two more chapters.  I have two more books in my head so I had better get moving.  In this world of ALS, lack of a crisis and lack of drama, is a good thing.  So I got a little bored and uninspired by anything else, and returned to my writing.  I feel no urgency to go outside, and I have a new writing gig at writing about Rego Park and Central Queens, which I have been lax about promoting.  So I figured it's a good time to finish this book, which is not the book I really want to write.  A professional in the field told me that this book about my journey with ALS should be my first book, to introduce myself to readers, and then interest them in anything else I write.  But I am having a hard time finding the thin line between writing what I know, and writing in a too-snarky and too-angry tone.  The truth is that the first few years were painful and disappointing, and I have since found a valuable path and useful lessons I have learned about many different parts of life.  I have learned forgiveness and how to find inner strength.  But the beginning and middle were not like that.  And the most important thing I have learned is that people say they want to know what it is really like to find out you have a disease like this in mid-life, but they really don't want to know.  Although I sugar-coat or omit a few things, I also want to present the joy and wisdom which comes from an experience like this.   

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