Wednesday, October 29, 2008

Under "Compassionate Allowance", Social Security Disability Review Now Fast-Tracked for ALS/Lou Gehrig's Disease

Anyone who has followed this blog from the beginning, or has seen a friend or family member apply for Social Security Disability, knows that it takes five months or more to get that first check. And, it takes two years to get Medicare coverage. Well, for someone diagnosed with ALS, that two-year period is waived, as it was for me. That "presumptive" status, and waiver of the two-year waiting period were granted to ALS as a result of advocacy efforts by the ALS Association.

But, until now, there was nothing anybody could do about the 5 months it took to review the case and get that first check. Well, that has changed According to an email I just received
"The ALS Association secured another victory in Washington, DC this week as the Social Security Administration (SSA) implemented a new initiative designed to speed disability applications for people with ALS and other serious conditions.

Under the new initiative, called Compassionate Allowances, SSA has included ALS on a list of conditions that automatically qualify for expedited reviews. When fully implemented, SSA estimates the initiative will shorten review times to an average of just six to eight days.

The ALS Association has strongly supported this initiative since it was first proposed in July 2007 and The Association testified in support of Compassionate Allowances during a hearing convened by SSA Commissioner Michael Astrue in December, 2007. (Our testimony is available on the Social Security website, here:


Disability Review to Have Priority for ALS Patients


Disability Review to Have Priority for ALS Patients


Tuesday, October 28, 2008

ALS Association Lou Gehrig Awards Dinner

I was fortunate enough to be invited to the Lou Gehrig Awards Dinner given by the ALS Association of Greater NY at the Marriott Marquis, which raised over $3.9 million for ALS research and patient services. Attendees paid $1,000 each, so it was an honor to be invited as a guest of one of ALSA's board members. The honorees were Chris Chambliss [whose award was accepted by Graig Nettles, and Sandy Koufax and John McEnroe [who were both there].
Read about it in this article from the Yankees website

Friday, October 24, 2008

My Compassionate Neighbors, Again!

Just when I thought things were looking a little clearer, I opened my mail yesterday to find a letter from my co-op board informing me that if I don't come up with a few hundred dollars, they will start "legal proceedings", which I assume means eviction. Another reminder that I am living among neighbors who are not -- well -- very neighborly. Eviction will take a long time, and I will probably be able to get back on track long before they put me out on the street, but this is something I never thought could happen to me. Then again, I never thought ALS could ever happen to me either. Judging by the news of the millions of people losing their homes out there, I am in good company. Suddenly, $7,000 to renovate my bathroom to enable me to take a shower, or even $1800 for a portable "Fawsitt" shower, seem as far out of my reach as any other dream. Of course, neither of these would be an issue if I lost my apartment anyway. Are there wheelchair-accessible homeless shelters?

I had my quarterly appointment at the ALS clinic. I am still stable. The neuro even said he rated me higher in some strength tests. When we both figured it was probably due to the physical therapy I had, he gave me a prescription for some out-patient PT for range-of-motion work. And a couple of angels gave me funds for in-home massage and stretching therapy with Michelle. Courtesy of another angel, I was able to get a haircut and color last week, just in time to attend the Lou Gehrig Awards ALSA Fundraising dinner. It will honor John McEnroe and Sandy Koufax, so I'm pretty excited at being invited to this $1,000-a-plate dinner!

Today on Oprah's show, they featured the Amazon Kindle, a machine that allows you to store and read books online -- very portable. What a great thing for people with ALS who can't hold books and turn pages. At $349.00, it's absolutely prohibitive for me. But on Oprah's site they are offering a $50-off coupon code for the next 7 days. A wonderful item for anyone who can afford it [the books to download are much cheaper than a paper book, and you can also download music and audiobooks]. When I get the co-op off my tail, I can start saving for a Kindle, which is much cheaper than a portable shower!

Saturday, October 18, 2008

Coping in Different Ways

There is a very interesting posting on another blog about another ALS patient, who has 3 daughters, each of whom are handling their mom's illness very differently. Please check it out.

One of the things I have learned is that each person has his/her own way of coping with a friend or family member with a serious illness. I'd be interested in everybody's take on this entry above, after you read it, either in a comment on this blog, or a private email.

Monday, October 6, 2008

Update Oct 6, 2008

Check out my new articles "Where to Donate Christmas/Chanukah gifts", and "Best Places to Volunteer for Christmas/Chanukah in NYC"
Wishlist: A quiet place to continue and finish writing my book[s]

I always wanted to study Anthropology, but I got hung up with the "what are you going to do with that?" syndrome
when I was in college. So I found free courses through MIT, and looking for free courses elsewhere.

A decent digital camera or time to master using the crappy one I have. I still mourn the loss of my Nikon Coolpix that was
stolen by an aide in the early days

Wish I could: Hire someone to go with me once a week to the city for a few hours, just to explore

Hire the PT once a week to stretch me out and massage me, and maybe just exercise me a little. I said good-bye
to her on Wednesday, because Medicare/Medicaid won't pay for her anymore, due to the fact that I do not have the
kind of illness that can improve, and even though I have actually gained strength, according to the PT.

Just get all my pictures sorted out so I could just scan the best representatives in the computer.

Connect with more old friends and family members to clear up some fuzziness of memories, or should I
write from the fuzziness? [might be an interesting effect]

Find an author/mentor to guide me in this journey of writing this book.

Find someone to just do some things the aides don't do, i.e. clean windows, behind furniture, under things, clean and
soak bunny litter-boxes with vinegar weekly.

Hire someone to remove the bathroom hamper, retile that part of the wall, and replace the vanity/sink with a wall-hung
sink. Although first I need someone who can measure the dimensions of the shower/tub-slider chair. You see, I am sure
if I do those two little modifications, I could use the tub-slider. Better yet, if I do those two things, there might
just be a small enough transfer chair that the aides can use to wheel me into the bathroom, at least part of the way.

I now: Have a handle on my financial situation, and know what I have to do. This doesn't mean I have more money,
just that I know that I had to contact my creditors and make a plan, and NEVER be late on a bill again! Suze
Orman says that is what everyone must do now!

Am totally committed to not buying anything but the barest necessities UNLESS I HAVE THE CASH!

Feel completely okay with being alone to accomplish my goals, above. I just wish I had access to some minimal
help with some things I can't physically do.

Know the direction of my first book, or books, but I wish I could decide if it's going to be one book or two. So
what I am doing is writing the chapters of both, and figuring out if I can somehow ibtertwine the two to make
sense, i.e. memoirs segue-waying into present.