Update August 30, 2010-- Bye-Bye Summer

Well summer is at an end.  I am grateful for the three outings I had this summer, which was really a hot one.  At the beginning of the summer, Louise invited me to the annual barbecue at her church, St. Luke's, in Forest Hills, on a beautiful summer evening.  In July, Judy came out and we took Access-a-Ride to the Rockaway boardwalk. It was pretty empty on a Tuesday, and Rockaway is still very depressed, with a lot of boarded-up businesses right next to the beach on Beach 116th Street.  It reminded me of my home town -- Long Beach -- before it got the HUD grant which facilitated its revival.  There was an SRO right off the beach and therefore some shady characters on the boardwalk.  Originally, we were going to go to Brighton and have lunch in one of the Russian restaurants on that boardwalk, but I thought it would be too far, and there is a city bus from Rockaway to my neighborhood in case we had any trouble with Access-a-Ride. But Access-a-Ride was impeccably on time, and I'd forgotten what a long ride it was from my house to Rockaway, along Cross Bay Blvd and through a long stretch of nature preserve.  I wish I had gone with Judy's original suggestion of Brighton, which would have taken the same amount of time over parkway.   Oh well. But it was hot and the sun was out, and I knew it would be my only opportunity to see the ocean this year, so I was grateful to be there. And Judy is great for having gone with me.

My third and last outing this summer was in mid-August. Jenny Vidoni, who works at MDA in Manhattan and coordinates the MDA/ALS efforts in NYC, came out to visit.  I know Jenny from our support group at All Souls Church, which she co-facilitates.  I was just so grateful that she came out because Manhattanites hate to come to the outer boroughs.  We walked to Flushing Meadows Park, and visited the Zoo.  We had a great day.  Jenny is used to dealing with all kinds of disabilities, so it was fun, and extremely comfortable.

I was invited to be part of the Consumer Board of Concepts of Independence, Inc.  Concepts is the company that runs my Consumer Directed Personal Assistant Program [CD-PAP]  This is something that disabilities advocates fought for, along with the Americans with Disabilities Act.  The CD-PAP allows me to remain in my home and select my own aides [personal assistants], rather than depend on an agency.  Those of you readers who have been following me since the Caring Bridge page I had, know what a triumph it was when I got onto the Concepts program.  The agency I worked with before, through which I met 3 of the aides I have now,  was less than accommodating, sending all kinds of aides to me who were less than satisfactory.  I was robbed of a brand-new digital camera, and plenty of cash.  Some of them were so scary, I was afraid to go to sleep at night.  Eventually, I got a team of aides whom I could trust.  But when any of them called sick, the agency sent strange aides instead of ones I already knew.  It's very difficult to keep training strangers about what to do, especially since I can't speak.  And some of them were intimidated, frightened, or just plain lazy.  I had an assortment of ladies who I am sure were nice people, but they resented being sent to such a "difficult case" and took their perceived misfortune out on me, or just fell asleep, snoring, in my big comfortable chair.  My complaints fell on deaf ears, with the agency supervisor often telling me "I have a hard time finding aides who will go to you at all".  That didn't make me feel very good, and to top it off, I had a nurse who would come once a week and tell me "I have a hard time finding an agency who will take your case on a long-term basis, because your case is so difficult", which made me feel even worse. The day I switched to Concepts was a happy day.

Long-Overdue Update

Once again, too much time between updates.  There have been too many things hanging, and too many things changing minute by minute.  I didn't want to write about something, only to have it change between the time I typed it and the time I pushed the "publish" button, only to have it change still again after publishing and before sharing the link on Facebook and Twitter.

So, I was having trouble with my PEG [feeding] tube.  Since it was replaced in September 2009, at Beth Israel Hospital, it was never right.  From the time it was originally placed in September, 2005 until then it hadn't given me a moment of trouble.  The only reason I had it replaced 4 years later was that PEGs are usually changed every two years and this one was discolored, and the rubber had weakened.  So it was replaced in September of 2009. But when it fell out in March of 2010, I went to my local ER and the tube was replaced by a resident [not GI] doctor.  That was when the situation got worse -- the tube leaked stomach acid, which ate through my skin, making the area around the tube angry-looking and very painful.  The doctor at Beth Israel insisted everything was okay, but I knew it wasn't.  So during my next quarterly visit to the MDA/ALS clinic at NY Presbyterian/Weill-Cornell, I lifted up my shirt for my neurologist, and she was pretty horrified 

So fast forward to July and Dr. Crawford at Cornell, GI doctor.  He says I am best off replacing the tube in a whole new location.  This would mean another endoscopic procedure and going under general anesthesia again.  Of course, I freak out, and Dr. Crawford says he feels bad, but it might not be enough to do a simple tube replacement in the same site.  Anesthesia is always a risk for anyone, but especially for a person with respiratory issues.  When it was done in September, I wore my bi-Pap while I was under anesthesia and all went well, but this is 11 months later and I might not be so lucky this time.  But I resign myself because it has to be done.

I came into Dr. Crawford's office this past Monday with my bi-Pap, fully expecting to have the endoscopy, and Dr. Crawford tells me that he has decided to do a simple PEG replacement to see if that works.  So that's what he did in the same site.    to tilt a bit in order to clearWe are keeping our fingers crossed that this does the trick. If it doesn't, I'm headed for another endoscopy and anesthesia.

My wheelchair is fixed -- for now.  Every once in a while, the tilt stops working, but then it starts again unexpectedly.  This is a pain when I need to nap, and when I travel in the street, because I need to tilt slightly in order to clear bumps and curbs.  I spend as much as 16-18 hours in the wheelchair, so napping and relaxing are very important.  So the technician came to my house last Friday and fixed the footrest, which wouldn't stay in the up position.  Getting the footrest out of the way is important for transfers.  So transfers have been hard on the aides and myself.  Ideally in a transfer -- from bed to wheelchair, wheelchair to bed or commode, etc-- the aide and patient work together, with the patient helping as much as possible according to his/his remaining abilities.  I have a new wheelchair finally in process, but it's anyone's guess how long it will take for that to happen.

The weather has not been good for someone with compromised breathing, so I have been inside much more than I like to be, and much more than any other summer so far.  Judy has come over a couple of times, and we have had to postpone a few times because of the high humidity and poor air quality outside.  I was invited to Louise's church's barbecue one evening, which was a very welcome and pleasant outing for me, but we were careful to get out of there when the mosquitoes came out after dark.  Ironically, the best place for me is the allergen-free beach, but I don't think there will be an opportunity for me to get to any beach this year. This loss has been the hardest for me to accept.