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!


Bibliotekaren said...

I'm de-lurking to say congrats on the award. I'll look for your story on the MDA-ALS site.

Also, thanks for sharing Senator Schumer's letter. I'm trying to educate myself more about this aspect of the Bill for my upcoming future issues.

Again, congrats.


Laurie Pringle said...

Hi Fern: I hope you'll ask your readers and followers to please vote for Kinga. She lost her Mom to ALS in January.

If she wins this vote, Mike and Ike's will donate $2500 dollars to ALS Research: http://www.mikeandike.ca/listen-up/ante-up

We need to get as many people voting daily as possible.


Webster said...

It's my first time here, and so far I like what I see. You are far more active with your ALS than I am with my MS. More power to you!

I have a question: Why can't you do the Ride for Life without an escort? It seems patronizing to me, but there must be a reason.

I'll be back.