Wednesday, May 26, 2010

MDA's "Anyone's Life Story", The NYC Walk to D'Feet, My VIP MTA Q60 Private Bus

May is ALS Awareness Month, so every May they dedicate their website to one ALS patient each day from all of their regions.  This year, I am their representative from the New York City region and May 26 is my day.  Go to Anyone's Life Story  for my profile.

So Fern's fighters raised about $2,000 [and still counting] for the NYC Walk to D'Feet ALS alon the Hudson River.  It was a beautiful day -- as a matter of fact, the weather was perfect!!  We took Access-a-Ride from home to the West Village, and figured it would be easier to just take the MTA NYC bus from the Hudson crosstown to 2nd Avenue and then the Q60 Queens Boulevard bus from East 60th Street and Second Avenue home to Rego Park [it goes down Queens Boulevard].  We figured this would be easier, but we never dreamed HOW MUCH easier it would be.

You see, when we reached East 60th Street and 2nd Avenue, where the bus route originates, we boarded an empty bus [me via the ramp of course] and to our utter surprise, the MTA dispatcher told the driver he was running late and needed to get "back on schedule" [you mean there is actually a schedule?]. He ordered the bus driver to put on his "out of service" and not pick up passengers until Woodhaven Boulevard, which is only two stops from my stop -- 63rd Dr.  That meant that I and Louise and my aide Cheryl had a private bus for 99% of our journey.  For those of you who don't take the public buses, this is a huge time saver, since stopping at every bus stop and picking up/dropping off passengers can take a lot of time.  So, a few red lights [Queens Boulevard is pretty well synchronized with traffic lights if you stay at a steady speed], were the only stops we made.  And, Queens Boulevard is a six-lane mini-highway with a main express road and a service road, so we got to ride the service road.  In short a normally 45+-minute ride was about 20 minutes and we were home in a jiffy.  So that was really good transportation karma.  All in all, it turned out to be a very successful day.  I'm happy to report that, at the starting line I only ate a half-bagel with a cream-cheese smear.  At the end point, I only had a few mini-muffins [yeah, I know -- sugar], and a diet coke [yes I know, I know]

On Saturday, May 22, I did a half-day with Ride for Life, a wonderful organization based out of Stony Brook University of the State University of New York [which happens to be my alma mater] in Eastern Long Island.  Every year patients ride their motorized wheelchairs, with friends and family members walking alongside, from Montauk to Manhattan.  Some people did the whole route and others did parts of the route.  Since I really don't have a way to get my wheelchair outside New York City, I do the NYC portion when I can.  This year, I met the group at Washington Square Park [West 4th] and we went all the way to Columbia University [West 116th] --approximately 5 miles. Louise walked part of the way and rode part of the way in someone's van [recent knee surgery] and my aide Cheryl walked the whole way!! [yay to both of them!!].  We had refreshments at Columbia and lunch at Washington Square Park.  The weather was perfect.  Ride for Life is a fantastic grass-roots organization that was started by Chris Pendergast, a former teacher in Northport, Long Island [fellow alum from Stony Brook University].  Each year the Ride, and other smaller events, raises money for research, patient services, and grants for things like respite care and home modifications. And, another important accomplishment of Chris and Ride for Life is the establishment of an ALS clinic at Stony Brook University Hospital.  Formerly, Long Island patients had to go to NYC [Columbia, Beth Israel, or Cornell] for their interdisciplinary team care.  As parts of Long Island [Suffolk County] can be 70 miles from Manhattan, this was a major hardship.  So the Stony Brook facility is a godsend!! Chris has been living with ALS for 17 years and, despite the hardships of living with this devastating disease, still runs Ride for Life year-round, with his wife Christine and a small [but dedicated] office staff and volunteers. Check out their website and see what one man has done despite a disabling illness, and with a team of volunteers and little overhead expense.

Tuesday, May 4, 2010

Home Care, Chuck Schumer Rocks, Two new passings, MDA Gives Me An Award

First of all, Senator Chuck Schumer rocks.  Read this letter he wrote to the disabled community of New York endorsing the Health Care Reform Bill and the Community First Choice Act, which helps chronically ill and disabled people stay at home and avoid institutionalization [i.e. nursing homes].

I humbly announce that I am the recipient of the NYC MDA's ALS Division's Personal Achievement Award for this year.  I could very likely appear on the annual tri-state NY metropolitan TV broadcast of the MDA Labor Day Telethon.

May is ALS Awareness Month and for every day in May, MDA presents a picture of an ALS patient and his or her "story".  I have been selected from the NYC area to represent my region. Its called "Anyone's Life Story" and you can see my story on May 26, on the MDA/ALS Division's website.

My condolences to the families of Maria Pizarro and Julie McCourt, two wonderful ladies who attended the Beth Israel ALS Association support groups with their families, and who lost their fights with ALS on the same day -- Sunday, May 2.  I will miss them.  This disease is so cruel!! They both had loyal spouses who were involved in their care, and a group of friends and family members who were there to support them.  They had everything to live for.

Unfortunately, I probably will not be able to participate in the Ride For Life this year.  They don't have enough volunteers to walk with the riders, and they will not be able to provide van transport to family members and friends who get tired.  Just the segment from Washington Square Park to Columbia Presbyterian Hospital which is half of one day, is from W. 8th Street to W. 168th street. At 20 blocks = 1 mile, do the math -- 8 miles.  The friend I had who went with me every year, had recent knee surgery and can't walk that far.  Even if she could take a bus part of the way, they won't let me ride alone with no one at my side, which I could do but they won't allow it.  My high school friend, who teaches in the Lawrence School District wants me to do the Lido Beach to Lawrence segment, which her school is doing.  They are going to see if they can make special arrangements to transport me to the starting point and from the ending point.  In that case, she or someone from her school will walk beside me.  So we'll see.  In the meantime, is anyone in the New York area free on May 25th to walk the 8 miles alongside me from Washington Square to Columbia Presbyterian?  Just let me know.

Last call to join my team "Fern's Fighters" at the Walk to D'Feet ALS on May 15th along the Hudson River!!  You can walk, donate, or both.  Just go to the team webpage to sign up or donate on line. Also, they need volunteers at the Walk to direct traffic along the route, give out water, and to work at the start and end points.  Please contact me if you would like to do this.  And, remember, we plan to walk at the Long Island Walk to D'Feet ALS in Eisenhower Park on September 26.

And finally there is a really great site that explains the Consumer Directed [Community Care] Program and the history of how it came about.  For anyone who wants to know how they can keep a sick family member or friend out of a nursing home or other institution, and not have to deal with the restrictions and other nightmares of a home care agency, it is a must-read!