Thursday, April 15, 2010

fernsfightersnyc10 Tiny URL for fernsfightersnyc10 Tiny URL for Greater New York Walk To Defeat ALS(TM):

Fern's Fighters
scroll down to the list of team members and use the link for "join team"

this is the link to sign up for the Walk to D'Feet ALS in NYC on Saturday, May 15th in Hudson River Park with my "Fern's Fighters" team. If Long Island is more convenient for you, we will be walking again on September 26, 2010 in Eisenhower Park.
The NYC walk is a one-way walk from the Village to the 50s, with celebration at the end-point. Unfortunately, there is no arranged transportation from end point to starting point. So, if you park your car at the starting point, you have to take public transportation back.

If you do the Long Island walk, it's a circular route, with a celebration back at the starting point, lots of food before the walk and hotdogs and lunch after the walk. Either walk is a lot of fun!! You can walk, donate, or both. And when you register, there is an area online to enter the names and addresses of your donors, who will then receive letters of acknowledgement from the ALS Association.

if you care to run a fundraiser before either walk, contact me and I will contact the ALS Association, who wants to assist with any fundraisers. If you are on Facebook [who isn't?], I suggest you become friends with ALS of GNY [Greater NY], and receive all the updates and tips from the Association.

Tuesday, April 13, 2010

Updates:Budget Cuts Affect Nassau Able-Ride and People With Disabilities in General

Sadly, I received notification that due to budget cuts, Nassau Able-Ride will no longer offer door-to-door service.  They are only required by law to provide service to people with disabilities along bus-routes, so that's what they are going to do.  This means that there are whole towns in Long Island that will not have Able-Ride paratransit service.  I'm happy to be living in New York City, where Access-a-Ride still offers door-to-door service.  It enabled me to go with my friend Judy to the kickoff party for the NYC Walk to D'Feet ALS at Yankee Stadium, and to the baby-naming of my friends' babies in Bayside, right on the border of Nassau and Queens.  But I would not have been able to go to my traditional New Years Eve party at my friend Nancy's house in Great Neck if not for the connection to Able-Ride.  This is very sad news for people with disabilities in Nassau County who don'thave use of a wheelchair van.  Budget cuts are hurting everyone.

Budget cuts could really hurt me in a big way too.  I am getting a visit from a nurse who works with NYC home care [CASA] next weekend, and she is going to evaluate me for continuation of home care.  Right now, I have two aides every day, on a "Split shift" of twelve hours each.  I am not likely to lose that, but they are not giving that arrangement to new applicants.  Rather they want to give everyone a "live-in" arrangement. In that plan, an aide lives in the whole day, usually for 3-4 days in a row. However, they are only paid for 14 hours.  This means that the aide is around in case there is an emergency in the night, but they are "off-duty" for eight hours.  They would rather work a 12-hour shift and go home, rather than have to hang out in a patient's house. I am sure that the aides I have now will refuse to do this.  So, if I am forced into a "live-in" aide situation, I am looking at a whole new set of aides.  That will not be fun, so I am going to have to convince this nurse that I need the two 12-hour shifts, without seeming so dependent that she will have to put me in a nursing facility.  It's a slippery slope, because I can do most things for myself, except I can't get into the kitchen, so the aides have to get everything for me.  So they would have to leave certain things within reach.  And since I don't really have proper sleeping arrangements, I would have to get an inflatable mattress at best.

On other important subjects, Lon Cohen says I can publish a book through Lulu with no cash outlay.  I was fitted for a new wheelchair, so I will get that in a few months. The new season of "The Tudors" has begun, and this season of "The Amazing Race" is coming to a conclusion.  I am going in May to see the "spasticity guru" as he is called by the Cornell ALS/MDA.  He is at the Hospital for Special Surgery.  The pollen count is also killing me, but when I feel I have to take an antihistamine, I can count on falling asleep for a few hours.  I love spring, but it is a double-edged sword for me.  I am comfortable inside with the A/C going.  I remember my beloved, now-retired, allergy doctor Sidney Rand telling me "Always take a vacation at the beach and never in the country.  Take hikes by the ocean on your days off, and never in the woods."  I do always feel best at the beach, far away from pollen and ragweed.  I always imagined myself retiring to a beach house to do my collages and my writing.  I will have to settle for an air-conditioned studio apartment in Queens. My biggest challenge is the TV soap operas in the background all day.  I can't help this, because the aides have to be amused too.