Friday, November 28, 2008

Mad Men: Not the Beaver Cleaver 60s

Interesting article about my favorite TV show "Mad Men". What do you think? Is its depiction of the 60s accurate? To me, it seems so, although I didn't grow up in the executive-dad world, and my mom was not the wife of a white-collar man. She was a stay-at-home mom and smoked while she was pregnant!

Tuesday, November 25, 2008

Disappointing Results from IGF-1 Clinical Trial

Subcutaneous (under the skin) delivery of insulin-like growth factor 1 (IGF-1) does not benefit people with ALS at a dose of 0.5 milligrams per kilogram of body weight, according to a large clinical trial whose results were released today.
Click link above for full article
You can make a tax-deductible donation to ALS research through the Fern Cohen Fund of the ALS Association by clicking the link on the sidebar to the left, which will take you directly to the website, where you can donate online. All the money goes to the ALS Association for research and patient services.

Sunday, November 23, 2008

Fortune Cookie Chronicles by Jennifer 8. Lee

Okay, Jennifer 8. Lee [that's apparently her real middle initial], has sort of beaten me to it, but not really. In her book, and companion blog Fortune Cookie Chronicles, she talks at length about the rather bizarre relationship between Jews and Chinese food through her own Chinese experience, but I will be doing it from a Jewish perspective. Anyway, she provides a link to a "Last Supper" parody, where Jesus and his other Jews are eating Chinese food -- very funny-- click here

Saturday, November 22, 2008

Stem-Cell Interests Buoyed by Obama Pledge

One of the things Obama pledged to do first when he takes office: lift the government ban on stem-cells! Here is an article about one biotech company pitching in NYC this week!

Thursday, November 20, 2008

Co-op Apartment For Sale in Accessible Building in Rego Park

OK, now this is really funny!
I must admit I laughed hysterically when I saw this.
For those of you who just began reading this blog in the last couple of years, here is a little history.
Way back in 2004, while I still served on the Board of Directors of my co-op, I brought up the issue that the door in the basement was very difficult for someone in a wheelchair or using a walker. To make a long story short, I quit the board and began a 21-month-long battle, with the NYC Commission on Human Rights at my side, for an automatic door. There were other things, but we didn't get them, and I didn't feel up to going to court. Because one of the things we didn't get was a ramp into the lobby, all building functions are now held in the basement. Unfortunately, I still have to brave the elements when I wait for Access-a-Ride" because they won't pick up on the side of the building, where I have to exit. At the time I initiated the process, I had no home care, so often I had to wait for another neighbor to come through to open the door for me [risky at night].

Anyway the door is not the best and breaks down a lot, which angers some of the neighbors. Also, by the time the 21 months was over, I had aides to open the door for me, although I am not the only disabled person in the building. There has been some angry backlash from neighbors who feel the co-op should not accommodate me due to expense and the shoddiness of the door. I won't beat a dead horse, but when I saw the following posting in the yahoo group DNNYC [Disabled Network of NYC], I was intrigued. .... It advertises a co-op apartment for sale in Rego Park, and promotes it as good for wheelchairs because the building has automatic door-entry. So I clicked on the link for more information, because I was curious to see where this apartment was, and guess what! I won't tell you; I will let you click on my link to the posting, and then let you click on the link in the posting to see more info on the apartment which was advertised on a list for people with disabilities [PWDs]

Friday, November 14, 2008

Update November 14, 2008

On Sunday, Judy and I took the Q60 bus to 62nd and 2nd Ave. It was really convenient, and we may do it again next Sunday. Thanks to Maddy, Stacey, Toby, Margie and Nancy, I am paid up with the co-op and in a much better position with my credit cards. I made a settlement with Bank of America, and yet they continue to send me bills for the amount they said I didn't owe anymore. I am really concerned about this, and will have to follow up with letters. It just takes so much out of me to make all the phone calls, write the letters, send the emails, etc. I tend to nap a few times a day. I am mostly doing tube feedings to cut down on the exhaustion of eating, and risk of choking. I am trying not to snack at all, so I can drop some weight.

Some minor modifications-- changing to a smaller wall-hung sink, and removal of the hamper -- may allow the shower chair to fit in the bathroom, and might enable me to have a shower more than once a week. And this would cost a lot less than the $7,000 to modify the whole bathroom. I may be able to save a small amount of money towards that every month. Anything for fun or pleasure is not a possibility for a long time. I can't even think about a movie, a meal in a restaurant, a Broadway show, nothing until all my debt is under control, and my credit score improves. I do as many surveys as possible for gift cards, and Amazon gift certificates. But I now must find a teenager in my building that I can pay to come in daily to do the rabbit litter boxes, because that is something the aides find unpleasant and they really aren't supposed to be doing.

I can't even think of participating in any holiday festivities this year, since I can't spend one penny, and have to stop using credit cards. If I don't have the money I can't have it -- period! I must say I'm pretty proud that I can practice such self-denial. But just because one is sick, the creditors don't stop demanding their money, and they won't hesitate to prosecute me either. I have an application for a rent-subsidized handicap-accessible apartment in Astoria, but I doubt anyone will rent to me with such bad credit, so I have to repair it.

Sunday, November 9, 2008

For New Yorkers: Help Out Obama's Health Care Plan


So now that Barack Obama has been elected President, let’s help him out and show our support for his plan of healthcare for all!

Attend HealthCare NOW’s rally and march calling for a national Single-Payer health care system. At the rally there will be a Phone-A-Thon supporting HR 676, the United States National Health Insurance Act. Let’s get it passed.

One Nation, One Plan!
Thursday, November 13, 2008
4:00PM - 5:00PM Rally
Corner 42nd & 7th Ave
5:00PM March to GHI 34th St & 9th Ave

Tuesday, November 4, 2008

Election Day

Got back a little while ago from my visit into the Land of the Living. I love just sitting and people-watching, not always from the window of an Access-a-Ride bus. And to talk about something other than ALS. But I accept that my apartment is not conducive to entertaining. It's embarrassing to have a commode and certain equipment in full view. Two of my former students came to visit me and cook me dinner, and I didn't think about how inapproriate this place is for visitors.

And leaving the apartment seems to make others feel, well, a little uncomfortable. I thought my mission was to be out there and show that one can live with ALS, but I guess it didn't work out that way. This disease makes other people very nervous and confused. I am getting tired of hearing how people don't know how to act around an ALS patient, and what a frightening disease it is for people to look at. And most of all, I am sick of hearing "well, what is he/she supposed to say/do?" when I relate to other people that someone else was disrespectful or rude to me. All I can say is "learn, people!". And it would be nice if "friends" could help set people straight, and it can be done nicely. Yes, it's not easy to be around me;it's even harder to BE me. If someone asks you questions about me, or refers to me in the third person, with me sitting right there, would it kill to say "you can talk to her; she hears and understands". Recently, when an ignoramus at my hair salon screamed in my ear "CAN YOU PLEASE COME TO THE BACK", my aide politely said "Please don't yell; she isn't deaf".

Which brings me to my polling place. I elevated my wheelchair and STILL couldn't reach the top row to vote for president! Judy had to come in and pull the lever for Obama. AND NO -- don't even go there! don't tell me I should have gotten an absentee ballot! I am not in a nursing home, housebound, or out of town. We [disabled people] are supposed to be able to vote in one of the hundreds of accessible voting booths throughout the city, that obviously didn't make it to Rego Park. Even Judy was outraged because where she voted in Roslyn, they had an accessible booth.

Right now I am praying that tomorrow we will have President-Elect Barack Obama!