This is why I don't like to make New Year's resolutions: there are so many distractions to keep me from fulfilling said resolutions.  I know I should update more often, but then I have to manage my bills, my emails, and frequent naps.  Then there are the phone calls for doctor's appointments and prescription refills.  Not to mention the doctors' appointments themselves, especially if I have to take Access-a-Ride.  If I have an appointment in Manhattan which takes a couple of hours, I am literally out of the house for at least six hours, between the cushion I allow to arrive early at my destination in the event of delays, waiting time for my return trip, and the return trip itself -- especially during rush hour traffic, and including other pickups and dropoffs.  In theory, you would think I could use my ipad to field emails and write articles, but in reality, the wheelchair tie-downs don't keep me steady enough, and the ride is so bumpy and jumpy that I can't even read.  The only thing that works is listening to an audiobook.  I am often too tired to concentrate on even that.  When I finally get home, I am pretty wiped out and often starved and need to eat something.

New Years Eve I went to the annual get-together at my friend Nancy's house.  She has a bunny rescue out of her home in Great Neck.  Most of the people who attend are rabbit-rescue people I only see once a year, which is more often than I see most people anyway.  Nancy caters in Italian food from a great restaurant in the area, and it's a low-key evening with some really nice people.  Louise drives and she used to drop me off and pick me up, but a couple of years ago, she just started staying with me.  Now she looks forward to going because the food and company are so nice.  It takes two  to transfer me into the car however, and Diane was luckily up for the task.  So she worked that night and came with us.

The weakness on my left side has become more pronounced and my latest wheelchair modification addressed this, providing guides on either side, to force me to sit straight.  And on Thanksgiving, I rode in a car for the first time in almost 11 months.  I typically ride in a car to the Walk to Defeat ALS in late September, the Rabbit Care Conference in late October,  Thanksgiving,  Christmas and New Year's Eve.  In 2012,  my team didn't do the Walk to Defeat, we didn't go to the Rabbit Care Conference, and I didn't go anywhere for Christmas.    I feel badly about not going to my family for Christmas for the last two years, it looks like the Rabbit Care Conference is a thing of the past for me, and I don't know how much longer we will be doing the ALS Walk to Defeat.  In the best of times, people move on.  The problem with a disease like ALS [especially when there are speech issues] is the opportunities to bring new people into my life, are slim to none.  I noticed when I rode in the car Thanksgiving and New Years Eve, that I lean to the left, without the benefit of the guides I have in my wheelchair.  So I have to sit against the left end of the back seat, or devise some kind of stiff pillow or wedge to hold up my left side.

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 Examiner.com 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.