I Helped Someone! YAY!! Access-a-Ride [almost] Going to LI

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The other night I was at the ALS meeting/holiday party at Beth Israel and I was approached by the mother of a patient who still works as a physician [and the mom goes with her]. Well, they say that they learned from my blog about the accessible taxi dispatch program, and tried it because their wheelchair van is in repair. They were pleased with the service on the first leg. The second leg there wasn't a taxi available in time, so I think they took the bus, because they didn't want to wait too long. But it's nice to know that I helped someone through this blog.

Also, Access-a-Ride is going over the Nassau and Westchester border 3/4 mile to Great Neck, Atlantic Beach, N. Hyde Park, etc....so there are more options! But DNNYC is fighting the fare-doubling promised by the MTA.

Saying From a Bunny Parent -- So True!

There comes a point in your life when you realize
who matters,
who never did,
who won't anymore...
and who always will.
So, don't worry about people from your past,
there's a reason why they didn't make it to your future.

Senior Tour With No Accessibility -- Duh?

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This is an email I received today from my friend Lora Frish:

This morning, December 10,
I went on a tour of Gracie Mansion with other
elderly people from the Van Cortlandt Senior Center. There was one
person with a walker and several with canes. The tour was on two
floors, but the elevator was unavailable. The people who couldn't
climb the stairs had to wait in chairs on the first floor for the rest
of us to finish the tour. The elevator should be available for tours.

D-u-u-h-h???? A bunch of seniors are coming......Now, should the senior center pre-arranged by inquiring at the time of booking? I don't know the level of expertise and experience of whoever arranged this tour, but someone at Gracie Mansion, upon hearing a bunch of seniors were coming, might have made the elevator available?

Word to the wise for anyone reading this who may be in a position now or in the future, to arrange events for seniors and/or disabled. Check on accessibility.

Is "Gay" the New "Black"?

Can the Proposition 8 struggle in California really be compared to the civil rights struggles in the 1960s. Read this article from an LA Times blog, which asks the question.

Accessible Taxi Dispatch Program Needs Users

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Almost two decades ago, disability advocates went to then-Mayor of New York City, Edward Koch, to obtain his support for the proposed program to make New York City's public bus system wheelchair-accessible. To everybody's astonishment, Mayor Koch, who had a legacy of liberalism and progressivism, was not supportive. The reason Mayor Koch objected to the accessible-bus program, which would equip each bus with a motorized wheelchair lift, was not because the mayor was not sympathetic toward people with disabilities [PWDs]. He objected to the costly modifications because he believed PWDs would not use the accessible buses, and the expense would be for naught. Moreover, he was afraid that able-bodied riders would object to the extra time spent to get a PWD boarded, and would resent the new system, and the PWDs.lifts ta Koch feared the resulting backlash of able-bodied riders venting anger toward PWDs would be counter-productive, and cause increased alienation and isolation of PWDs.

Several years later, Ed Koch had to admit that he had been mistaken. The accessible-bus program became a success. Today, every MTA New York City bus is equipped with a motorized ramp. It takes very little extra time to board a wheelchair, and the able-bodied riders rarely exhibit annoyance. As a PWD myself, I am amazed at how efficient this system is. At the beginning, I understand there were growing pains -- broken lifts, or bus drivers who claimed their lifts were broken out of laziness or resistance -- often leaving PWDs in wheelchairs waiting for several buses. But I have had nothing but efficiency and friendly, gracious bus drivers.

Now, there is a new program in place. New York City has an ever-growing fleet of wheelchair-ramp-equipped taxis, pictured at this link PWD advocacy groups are trying to get more fleet owners on board to replace old taxis with newer accessible models. Formerly, it was very difficult to find an accessible taxi to hail from the street. But now there is a dispatch program in place. A PWD can now call 3-1-1 and ask for the accessible taxi dispatch. The call will then be routed to an appropriate dispatcher, who will send out a ramp-equipped taxi. According to a statement from the Disabled Network of New York City [DNNYC] this week "Arguments against adding more taxi and livery services for riders with disabilites have long been based on the low numbers of people using existing services. Based on the figures available, taxi and livery drivers assert that providing taxi service to PWD's cannot be profitable. Ridership of PWD's for the recently launched wheelchair accessible taxi project is below projected levels." So, in order to make this accessible-taxi program viable and profitable, PWDs have to make a concerted effort to use the accessible taxis through the new 3-1-1 dispatch system. Eventually, New York City hopes to be like London, England, a city where every taxi is equipped for wheelchairs.To read more about the Accessible Taxi Dispatch Program, click here.

"American Idol" Contestant Will Donate Christmas Song's Proceeds for ALS

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Former Idol contestant Michael Johns, will release a new song for the holiday season called "Another Christmas" on iTunes December 9. The proceeds from the song will go toward finding a cure for ALS. Johns' interest in ALS came out of his friendship with "Access Hollywood" host Nancy O'Dell. O'Dell's mom Betty passed away this past June, after losing her battle with ALS.
For the full story, and a chance to listen to a preview of the song, clink on the link on top.

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!

Disappointing Results from IGF-1 Clinical Trial

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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.

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

Stem-Cell Interests Buoyed by Obama Pledge

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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!

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

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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]

Update November 14, 2008

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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.

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

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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

Election Day

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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!

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

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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:
"

THIS IS GREAT NEWS!!!!!!!

Disability Review to Have Priority for ALS Patients

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Disability Review to Have Priority for ALS Patients

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ALS Association Lou Gehrig Awards Dinner

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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

My Compassionate Neighbors, Again!

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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!

Forced to Sit Still and Shut Up

Coping in Different Ways

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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.

ALS/Lou Gehrig's Disease Link to Footballers Being Studied in Europe

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Check out Georgina Best's blog. She is a football [soccer] player in the UK who talks about the link they have found between ALS and football players

Update Oct 6, 2008

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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.

ALS Registry Bill Passes Senate

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As researchers and scientists across the country [and worldwide] to find a cure, or even more effective treatments, for ALS/Lou Gehrig’s Disease, it was announced that the United States Senate passed the ALS Registry Act, which will develop a system to collect data and establish a national registry on ALS/Lou Gehrig’s Disease, and other motor neuron disorders. These neuromuscular diseases are often confused for other disorders like Multiple Sclerosis, Parkinson's, spinal-cord damage and other conditions. In fact, there have been numrous cases where patients with misdiagnosed ALS have gone through the wrong treatments for years, or unnecessary surgery, before finding they had ALS. The bill passed the Senate HELP and House Energy and Commerce committees by unanimous vote in 2007 and recently passed the House. After yesterday’s Senate passage by unanimous consent, the bill will now go to the President’s desk. New York State Senator Charles Schumer is a co-sponsor of the Senate bill.


What does this mean for ALS patients?

It means that scientists and researchers are one step closer to finding a cure for ALS, which is currently incurable, with treatment limited to medications that alleviate symptoms. The national registry will help identify the incidence of ALS in the United States by collecting the data which will identify patterns and commonalities. These findings will improve ALS research, management and treatment. This legislation will significantly augment the nation’s efforts to find a cure for ALS.


If anybody remembers my blog entries from May, 2007, a delegation of PALS, CALS, and family members of people with ALS went to Washington DC to lobby for the passage ofthis bill, so I am proud to have been part of that.

Frustration

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I have had to deal with the most maddening situation this week. Basically, I needed something and it all seemed so simple to me -- a couple of phone calls, maybe a form to fill out, and a professional involved in my case to expedite the whole thing. Well, this process took on an ugly life of its own. Three days of unnecessary emails, doubt, and questions from the "professional", enmeshed in bureaucracy, left me angry, exhausted, defeated, and bitter. In the end, I had to remind myself of a few rules:

1) A definition of insanity is "doing the same thing over and over, and expecting a different outcome"
Well, this person is someone I have dealt with before, more than once! Each time I have dealt with her, I end up feeling the same way I did yesterday. So why did I go to her
again? Does this mean that I am insane? Probably. But it also a control issue, one where I somehow convince myself that a less-than-competent bureaucrat will see things
my way, or at least I can teach her to. Well, sadly, this never works with most people.

2) I seem to forget, at times like these, that not everybody works as I do. Part of this frustration is due to the fact that I can't work anymore, and wish I could. Anyway, I
am always thinking "if I had that job, I could do it so much better.

3) Most importantly, at some point, I just have to accept that my problem isn't going to get resolved with this person and either move on somehow, or find another
resource to solve the problem.

The problem with ALS is that there is often no time for this nonsense! You would think that the people who work with ALS patients for a living, would always keep that in mind. Alas, this isn't always the way!

test post

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2Gs -- Children of Holocaust Survivors

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While I heard stories of growing up poor in the Great Depression and teenage years during World War II from my parents, there were other kids, like my friend Toby Ridzinski, who grew up with a whole other legacy. They grew up with parents who had lived through the horrors of the Holocaust. Every once in a while, while I worked at Key Food, I would catch a glimpse of a tattooed several-digit number on the inner forearm of a customer's arm as she carried away the groceries from my register. I knew what it was-- a number the Nazis had tattoed on inmates of concentration camps.

Some children of Holocaust survivors spoke to their kids about the ordeal, and some never did. I remember learning that there were groups for 2G's, which stood for "second generation"] because they had issues none of us could ever know. Toby told me once that her father would have violent nightmares and wake up screaming. Another friend Anita, had a photo in her living room of a little boy of maybe 4 years old. She was an only child, so when I asked who the boy was in the picture, she put her index finger over her mouth and whispered "shhh, I'll tell you later". It turns out the boy was an older brother she never got to meet. You see, her parents were a good 15-18 years older than my parents, which was kind of embarrassing to her because she always had to correct people when they referred to her mother as her grandmother [which is kind of funny by today's standards, because when Anita was in high school, her parents were the same age as some parents of today. But back then, they were old. A lot of young parents of the Holocaust, especially if they lost children, started second families, often with "replacement" children of a new generation. We never talked about Anita's "older brother". She told me that one time who he was, to satisfy my curiosity, but I sort of knew never to bring it up again. The Holocaust survivors are dying off, many with secrets they will take to the grave. Some talked openly about their experiences, and many never did. And I'm sure there were even some who blocked out all memories of that painful time. And then there are the "2G's", who lived with, and were raised by parents who had lived through unspeakable horrors -- and suffered post-traumatic stress like no other.

Now Published on MyLot

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Read My Review of the Book "Superdove".

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Update: Hoyer Confusion, Gracie Mansion, Phys. Therapy Rocks!

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Before I forget to mention it, I won a competition in one of my online writing groups, where points are turned in for gift cards [I won 1,000 points] Here is the link to read my entries for a "Healthy Living Journal".

So my physical therapist, Michelle, came from Gentiva Home Care. Herein lies the great Hoyer Lift paradox. Together with her supervisor, TJ, they got the Hoyer out of my basement storage. Now, I should point out that this thing is h-u-u-g-e! I have been resistant to having it in my apartment because of its size, and the aides have been resistant to it because I can still stand and transfer. But, there have been moments, especially when I was trying out the lithium, that I am just too weak to stand and pivot.

So we got out the Hoyer, and the two ladies struggled with it, and suddenly TJ says "this is just not safe to do with one person. You won't be able to use it." I emailed my friends at the ALS clinic, because they were the ones who told me to book PT to train on the Hoyer. Antoinette went through the roof, phone calls ensued, and the result was a second visit with another PT. No problem this time : he made it look easy with one person. But I thank God I don't have to use it yet. PT is wonderful, and very beneficial. Michelle stretches me out and I have been doing so well with transferring and standing. I intend to pay her privately once a week, when Medicare/Medicaid stops paying her, which will be probably in a couple of weeks. At $85 a pop, I will have to prostitute myself with any way I can make money on the web! I found sites where I can earn Amazon gift certificates, which are really good. And I am still doing everything I can, to avoid spending money! Needless to say, there hasn't been a whole lot of fun or enjoyment, but that's the way it has to be for now. I look forward to my weekly Starbucks outing. My summer culminates tomorrow with the annual Ride for Life party at the Pendergasts. And on Tuesday my friend Stacy is coming down from Dutchess County. She is leaving her two toddlers in the care of a sitter and driving two hours each way. It doesn't get much more dedicated than that! Wait until she hears that I need her to hang the picture she sent to me at Christmastime. How embarrassing! But I just can't do some things myself!
My wishlist : to have the apt painted, have pictures hung, and of course to get into Manhattan and be able to leisurely roll around. And of course the beach -- this is the second summer I will not have seen the ocean. Special wheelchair-friendly mats have made the beaches accessible, and of course boardwalks are great. I am still looking for a group that does outings for disabled people. I am accepting that I will never again see an ocean, feel the sand, roll on a boardwalk, or smell the salt air. For someone like me, who has always lived for the beach, and never lived far from it, this makes me sad.

Through the DNNYC [Disabled Network of NYC], I managed to get an invite to the annual barbecue at Gracie Mansion, commemmorating the ADA [Americans With Disabilities Act] I met Jody there, and we took a picture with Mayor Bloomberg. That, and the party today at the Pendergasts, will be the only barbecues for me this summer, so I am grateful for both of those. It's nice to be in a place where I am not a scary oddity that people avoid looking at. I am going to look for more events like that in the future.

Oy vey-- Glitch for Accessible Taxi Dispatch Program

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The good news is tat NYC is ready to roll out the accessible taxi dispatch program, whereby a person with a disability can dial 311 to have an wheelchair-accessible taxi dispatched. After all, in London, every taxi is wheelchair-accessible. But there's a glitch -- a big one! Watch Arnold Diaz' "Shame on You" report. My reaction? "Oh, for Pete's sake!" Well actually, I had stronger words that went more like "Can't they do anything f---ing right?"

Obituary For An Old Friend -- Common Sense Click Here!

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I didn't write this, but I had to share! For anyone who has ever dealt with bureaucrats or the stupid clerk at Duane Reade, and I think that's all of us!

For Anyone With Sleep Apnea Click Here

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Green tea for sleep apnea -- here is a great article and it is all backed by research.

Kew Gardens Gets a Lift -- Subway Accessibility Moves Closer to [My] Home

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Check this out!
There is now an elevator in front of the office building at the corner of Union Turnpike and Queens Blvd, to the E and F subway! I know I don't live in Kew Gardens BUT it still excites me for two reasons:
a) Forest Hills and Rego Park can't be far behind
b) I can take the Q60 bus there, and board the subway to one of the many accessible stations in Manhattan......this would be faster than taking the Q60 snail-bus to 60th and 2nd and THEN boarding a snail bus elsewhere....

Frugal!!

ferncohen.com
Last week the Access-a-Ride driver referred to my aide Lynette [who is one year younger than I] as my granddaughter. I looked in the mirror, and I knew why. I have had to stop coloring my hair and getting haircuts. Before ALS. I colored my hair at home with a $7 box, and had the salon color it when I had extra money. But now, $100 for a wash, color, cut, and blow, is totally unjustified when I am working hard to buy food and toiletries. So I guess I am destined to look like a grandma. Thank goodness my sister introduced me to a site where I can do work online for Amazon gift certificates. I was able to buy Depends through Amazon last week.

A few dollars saved is my big high lately. At support group on Monday, I said that money has been a challenge for me, since the $725.00 that Medicaid allows me to keep every month, is eaten up by monthly minimums on old credit cards, which have gone to 25 or more percent interest due to [in some cases] one month of a late payment. There is no way this can ever get better for me, so I can look forward to scrounging for basics and looking like a grandma of a 50-year-old for the rest of my life. It's a good thing I rarely get invited anywhere anymore. A few people at my support group were my angels last week when I said I didn't know where I was going to get the money for groceries for next week, and so was going to put my fingers to the keyboard for Amazon credits.

Speaking of putting my fingers to the keyboard, reality hit hard last week. I told my sister I needed to make more online to straighten out a miscalculation that is putting me more and more in the hole. She referred me to a site that answers questions from people on mobile phones. But, alas, I don't type fast enough on the laptop keyboard, and I failed the test. My rinJg finger and pinkie on my left hand are stiff, and slow me down. But thank goodness my sister Haley finds these opportunities, because often they keep me going in groceries. And the groceries she sent from Trader Joe [my favorite place!] and the cash help Dad gave, came just at the right time!!

But I did go to PS1 with Jen and Judy. Moneywise, I really shouldn't have.......$5 to get in, $4 access-a-ride, $7 in the cafe. I just really needed to get out of the house and go to a museum. Jen and Judy are two people who still want to explore places with me. Exploring neighborhoods and venues was a big pastime of mine, pre-ALS. Sadly, I am going to have to tell my neighbor I can't swing dinner out this week. It's a real case of "be careful what you wish for", because it will be a while before I can accept fJriends' invitations, if ever! So I don't complain about loneliness anymore; time alone in the house is money not spent. This is all very depressing for me, especially in summer. But it has to be this way. And, as lonely as it gets, the payoff is that eventually the phone calls may stop, and I can avoid getting sued and bankruptcy. Frugality is good for the spirit.

Yesterday, I went to the final appointment at the NYU Dental Clinic. For not having been to the dentist since January of 2003, I was pretty amazed that they found no cavities. And here was the best part: Lynette got them to reimburse my access-a-ride! I don't even know to ask for these things. They even gave me the name and number of an ambulette I can use next time to get transport for free. Evidently, with Medicaid, you get free transportation to and from medical appointments. Why did I not know this, and who was supposed to tell me? The doctor's offices when I booked the appointment and told them I was on Medicaid? The social worker at the ALS clinic? If you don't grow up in a home where family members collected benefits [handouts] from the government, you don't what to ask for, and they don't tell you. It really irks me to see immigrants/refugees in my neighborhood paying for groceries with food stamps, getting into private ambulettes and walking around [often with no cane or walker] with their home attendants. How do they come here, speaking no English, but finding out this information I never know about, even though I have worked hard all my life, voted, and paid taxes???!!!!!

So, I can't justify any unnecessary spending, like entertainment, eating out, beauty treatment. Maybe this was meant to happen, so that I could have more time alone, and not focus on what I am NOT doing this summer, and who is NOT including me in summer fun. Instead, I have to, once again, see what I can sell on eBay.

Living Forward -- A New Normalcy

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Here is a link to an excellent article about "Living Forward" with a disability


and in that spirit, I decided I would just merge my 3 blogs into one, because it reflects who I am, as a whole person. I started out by writing about my life as an ALS patient. Then, I started a blog about my life growing up as a boomer. Then, I recently started a third blog about Rego Park. But then I had less and less to say about ALS, not because I don't have it anymore, but because my life isn't only about ALS anymore. I am forging ahead in a new normalcy. I am lucky to have reached a plateau in my progression, and I hope to stay here for a long time. I have had to find a new purpose, and a lot of new people in my life. Sadly, most of the people I knew before have had trouble dealing with who I have become. Who I have become is not fundamentally different from who I was. But the outside packaging has become too scary and too hard to deal with, for most of my friends and relatives. So I went through periods of intense loneliness, depression, and disappointment. I still go through all of those, but I am able to take it for exactly what it is: that other people can't take my disability or that they can't adjust to the more dependent person I have to be now. I can't just get up and go the way I used to. People have to come to me and do certain things for me. Whether that means that I attracted only takers in my former life, who depended on what they could get from me, and now can't give, or whether these relationships meant more to me than they did for the other person, is neither here nor there.. What is important is that I have a few of the old people who could make the transition with me, most who couldn't, and some new people who never knew me able-bodied, and who befriended me despite, or maybe because of, ALS.

At this time last year, I had hopes -- a cure for ALS, the chance to move to a more suitable [accessible] place to live, fulfillment of a "bucket-list" of things I wanted to do before I die. Now I have no hope of a cure in time for me, I'm stuck by circumstances in a very unsuitable and inaccessible apartment, with no hope of ever being able to get out. And, the bucket-list? Well, let's just say it kicked the bucket! With very few people in my life willing or able to accompany me places, and no more money to pay for alternatives, I have very little hope of going very far away from my four walls, and no hope of my finances ever improving. On the top of my list was to publish a book. I was willing to self-publish to move it along, but that's expensive. It's not likely that a legitimate publisher would pick it out of the millions of manuscripts they receive every year. So I am down to writing 500-word articles for online publication for a few dollars, or gift cards. It's a daily struggle just to have enough to buy groceries and health items, let alone pay the bills and high-interest credit-card debt from before ALS.

Anyway, this is how it's supposed to be with a catastrophic illness. I am supposed to be worried aout where my next penny is coming from. I'm not supposed to be able to buy anything beyond absolute essentials. I'm supposed to be just grateful to be alive, and grateful for the 3 or 4 people who find time in their busy schedules to do my bills or meet me at a museum. I'm not supposed to expect anything more. And I do look at children with cancer, homeless people, and the people in Darfur as much worse off than I.

And I've learned that a lot of those people who come to support groups who claim to be surrounded by friends and "loved ones" are often saying what everyone wants to hear, because the friends don't come as often anymore and the "loved ones" go to the caregivers' group and cry about how exhausted and angry they have become, even admitting that they never imagined what they had signed on for and saying that if they had known, they never would have done it, but in the same breath saying that they don't regret it and would do it all over again [I know "huh?"]. I heard one "loving, supportive" wife admit that her [very wealthy] husband's decision to go on mechanical ventilation made her furios ["what about ME?" she said] [He ultimately went to the ER in crisis, and was not intubated, I imagine on his wife's orders, and died. She is living very nicely on the money he left, which would have been used up if he were allowed to live on a vent, possibly for many more years]. All this makes me happy I am not married, because my decision not to "vent" was circumstantially made for me.

And so I will put everything in this one blog, because I am not just an ALS patient, and the people who read this like to read everything else I write. And maybe one day, I can find the resources to publish a book. That's about the only thing left on my bucket listthat is remotely possible, because I don't need anyone to do it with me. The trips, cruises, the one-day excursions, painting my apartment, making it more accessible, tooth whitening, anything not covered by medicare or medicaid -- forgotten!

ferncohen.com
Check out my recently published content on AC:

The Tourist's Guide to the New York City Subway

Good News for Disabled/Wheelchair-Bound People Who Love the Beach!

ferncohen.com
This from my friend Norma Steck:
At Jones Beach Fields 4 and 6, you can get special wheelchairs that go on the sand [free of charge]. And, at certain beaches at Long Beach, as well as Brighton, Rockaway, and Orchard Beaches, mobi-mats have been installed so that wheelchair-users can use the beach. Read about it here

To All My Woman Friends

ferncohen.com
Two warnings: bottled water in plastic bottles in heat, and vitamin D deficiency

first, an email from my friend Dorothy DiBuduo

Bottled water left in your car is dangerous to women.
This is how Sheryl Crow got breast cancer. She was on the Ellen show and said this same exact thing. This has been identified as the most common cause of the high levels in breast cancer, especially in Australia . A friend whose mother was recently diagnosed with breast cancer. The Doctor told her: women should not drink bottled water that has been left in a car. The doctor said that the heat and the plastic of the bottle have certain chemicals that can lead to breast cancer. So please be careful.
Do not drink bottLed water that has been left in a car
and pass this on to all the women in your life. This
information is the kind we need to know and be aware
and just might save us!!!! The heat causes toxins from the plastic to leak into the water and they have found
these toxins in breast tissue. Use a stainless steel Canteen or a glass bottle when you can!!!

LET EVERYONE WHO HAS A WIFE / GIRLFRIEND / DAUGHTER KNOW PLEASE!!!


Now for the Great Vitamin D deficiency!

When I was a kid, my mother always told me to play outside. I figured she wanted to get rid of me while she cleaned the house [she was a SAHM and cleaned house every single day]. And I'm sure she wanted to get me out of her hair, but also the sun had benefits. There was an ozone layer to protect us, and little knowledge of skin cancer. And do you remember the days of no children's TV in the afternoon? But another reason was that we got vitamin D from the sun.

Vitamin D is one of those vitamins we don't get enough of from food. We get the majority of vitamin D from the sun. Problem: we are avoiding the sun these days, either by staying inside or slathering on sun block. Especially for pre- to post-menopausal women, this lack of vitamin D can be a big problem.

According to an article in Slate:

It has long been known that vitamin D is crucial for healthy bones. The presence of vitamin D in the small intestine aids in the absorption of dietary calcium—people with vitamin D deficiency are able to absorb only a third to half as much calcium as those with sufficient levels—and calcium is vital to the hardness of bone. The two diseases traditionally associated with severe vitamin D deficiency—rickets in children and osteomalacia in adults—are characterized by deformation or softening of bone. And chronic vitamin D deficiency is strongly linked to osteoporosis, a disease defined by loss of bone density and associated with increased risk of fractures.

the article goes on to say that the vitamin D in supplements or fortified milk is not enough. We have to eat fish like salmon or halibut, and get some sun! This supports the advice of "everything in moderation", and demonstrates how we can really throw the baby out with the bath water. We hear that we should avoid the sun because of skin cancer, so we stay inside or protect ourselves so well, that we keep the sun out and deprive ourselves of the sun's benefits!

This vitamin D deficiency is most damaging to children and women in pre- or post-menopause. In kids, it results in lack of proper bone formation and in adult women, leads to osteoporosis [which has increased]. I say "everything in moderation" when it comes to sun exposure, and let's not throw out the proverbial baby with the bath water.

update, clinic visit, research studies

ferncohen.com
Went for my quarterly clinic appointment monday. my muscle strength is stable, and I even rated higher on some functions. They are going to order a home PT to come in ad train the aides with the Hoyer lift. I had put it in the storage space because the aides were hanging clothes on it [now they hang stuff on the IV pole], but I ave to get it from the basement. The aides have been fighting using it because i think that they are afraid I will get lazy, but what they don't realize is that it can save their own backs. Also the PT at the clinic said that there may be days when I am a little weaker, and it would be better for all of us if we had the option. I know about those weak days because I Have had them already! I told them I do not want the PT through VNS. and they are going to use Bayada.

Dr. Scelsa told me of an interesting finding. They have discovered that ALS patients with higher cholesterol counts have had slower progression. Therefore, he said that maybe I should stop taking the Crestor. On the other hand, he said he expects me to be around for a while, and wants me to protect myself from heart attack and stroke. He seemed to want to think this one through; he was on the fence about this one. Also, according to the latest MDA/ALS newsletter, the high-dose COQ-10 study showed that the enzyme COQ-10 given in large doses provided no benefit to ALS patients. As for the lithium/rilutek combo [I stopped my lithium], Dr. Scelsa told me that he has 17 patients taking that drug, and they are all progressing anyway, so he questions its effectiveness. Nevertheless, they have opened enrollment at several clinics for the lithium/rilutek regimen's first drug trial in the US.

I met Louis last night. His wife has been coming to our support group for a few months, but last night was the first time he came with her. He wears his bi-pap 24/7, but can still speak, so he still teaches college from his wheelchair. I look forward to speaking to him online, because he is very much like me, in that he reads a lot and wants to do whatever he can to get out in the world and be among the living. He gave me a lozenge last night used by opera singers to clear up phlegm. It seemed to work well and he swears by it. He gets acupuncture and massage regularly, which is a luxury I can't afford, and has found some Chinese herbs that he finds helpful, whose names he is going to pass on to me. I really like this couple because they believe in living life while managing ALS. Of course, it helps to live in Manhattan, which they do, and have money, which they do. It is harder for me because I have to take Access-a-Ride everywhere to get any enrichment in my life, and once I pay my bills, there is nothing left for massage or acupuncture. There isn't even enough left for yoga classes for women with disabilities at the Hospital for Joint Diseases. And it will never get any better either, because I can pay only the minimums at best, and those minimums will never go down. It's extremely frustrating to me.

Death or Disability -- Which Would You Chooose?

ferncohen.com

Disaboom Survey Reveals 52 Percent of Americans Would Rather be Dead Than Disabled

Survey commissioned by Disaboom reveals that majority of Americans think life with a severe disability is not worth living.

Denver, CO (PRWEB) July 9, 2008 -- 52 percent of Americans would rather die than live with a severe disability, according to a recent national survey commissioned by Disaboom (www.disaboom.com) (OTCBB: DSBO; www.disaboom.com), the premiere online community for people touched by disability. Disaboom today announced the shocking results in an effort to educate people about why this viewpoint is so tragic.

The survey, launched in an effort to understand America's perception of disability, asked, "Which would you choose: Living with a severe disability that forever alters your ability to live an independent life, or death?" The survey findings noted significant attitudinal differences based on age, income, geographic location, and level of education.

Dr. Glen House, founder of Disaboom, wants to quash these statistics and is dedicated to changing America's perception of disability. House, himself a quadriplegic since his 20s, founded Disaboom to create the first interactive online community dedicated to improving the way people with disabilities live their lives. As the first student in a wheelchair to graduate from the University of Washington School of Medicine, the first person to climb 14,110-foot Pikes Peak in a wheelchair, and also a doctor, inventor, extreme sports enthusiast, husband and father, House hopes that Disaboom will spark a paradigm shift in the way America views disability.

click the title/link above for the entire article.

I feel overwhelmed sometimes, especially with paperwork. It gets so easy for me to sit in front of my computer, as the day flies by. I have been writing a lot, and investigating opportunities to make some change for the grocery store. I am trying not to spend money; I want to at least bring my accounts to a place where I can at least make the monthly minimums, and not have to avoid answering the phone. Forget about any discretionary money -- I may never have that. A year ago, I had goals and plans for making my life -- what's left of it -- better. Now I just have to get through the day, and amuse myself enough to avoid getting caught up in negative or self-defeating thoughts.

I'm grateful when someone can make a phone call for me, or even come over for a half-hour to help me rearrange something or bring something I asked them to pick up for me. I make no demands, I don't expect them to stay. This apartment isn't guest-friendly anymore. My weekly visits with my volunteer, Judy, are often my only time out. Last weekend we sat in a park, watched the birds, enjoyed just looking at the greenery, and I listened to two conversations she struck up with two interesting neighborhood characters. I forgot how nice it is to stop and just sit. When I was able, I would go to the beach, even in the off-season, and just sit. Now we were in a little park, but it was still the same kind of experience.

I wish I had taken more time to do this in the years leading up to ALS. Instead, I kept running, and doing anything to avoid just the stillness and quiet. I hated being alone, or at least I thought so. I am learning now, when I am seldom alone, that I valued my privacy and solitude. It's a case of being careful what you wish for. Whoever coined the phrase about stopping to smell the flowers was right. Healthy or sick, disabled or not, everybody needs to stop what he's doing, and take time to be still.

Many ALS Patients Have High Quality Of Life, Studies Find

ferncohen.com
ScienceDaily (2008-06-24) -- Patients with amyotrophic lateral sclerosis experience an astonishingly high quality of life. This disease leads to progressive muscular weakness and the clinical course is always fatal. In spite of the continuously increasing loss of control, new studies have shown that many ALS patients are satisfied with their lives.

Wow! I'm on the Front Page of Associated Content

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My article about Tazo Tea is featured today on the front page of Associated Content. That means mucho clickos! By the time you read this it will probably be off the front page. But trust me -- it was there! A bunch of people left comments!
WOO HOO!!!!!

Music Update for Boomers

Thanks to blogger Gumbo, here are updated titles to old classics for aging boomers

Herman's Hermits --- Mrs. Brown, You've Got a Lovely Walker

Ringo Starr --- I Get By With a Little Help From Depends

The Bee Gees --- How Can You Mend a Broken Hip?

Bobby Darin --- Splish, Splash, I Was Havin' a Flash

Roberta Flack --- The First Time Ever I Forgot Your Face

Johnny Nash --- I Can't See Clearly Now

Paul Simon --- Fifty Ways to Lose Your Liver

The Commodores --- Once, Twice, Three Times to the Bathroom

Marvin Gaye --- Heard It Through the Grape Nuts

Procol Harem --- A Whiter Shade of Hair

Leo Sayer--- You Make Me Feel Like Napping

The Temptations --- Papa's Got a Kidney Stone

Abba --- Denture Queen

Tony Orlando --- Knock Three Times On The Ceiling If You Hear Me Fall

Helen Reddy --- I Am Woman, Hear Me Snore

Leslie Gore --- It's My Procedure, and I'll Cry If I Want Too

Willie Nelson --- On the Commode Again

Posted by Terry at 2:43 PM

Thanks for that one!!

Who is This Man?

Answer to the quiz from last time:




Okay, so in my last entry, I posted a picture of a very distinguished-looking middle-aged man, and I asked you who he is.






yep, Mike Nesmith of the Monkees, who is living very nicely off his mom's fortune. Betty Nesmith, Mike's mom, was the secretary who invented liquid paper!

Assisted Suicide Poster Children

ferncohen.com

Here is why everyone is so scared of us. We are the poster children for assisted suicide!

Reprint of a posting I made last week on the "Living with ALS" message board:

All over the media, ALS is presented as a disease that warrants immediate euthanasia...we are flooded with images of Dr Kevorkian assisting patients with ALS to die "with dignity". Everywhere ALS provides justification for support of assisted suicide!
In today's Sault Star of Sault Ste. Marie Ontario, columnist Nadine Robinson writes:

"Should I ever be faced with Lou Gehrig's disease, or ALS, and my perfectly functional brain becomes a prisoner of a body turning to stone, I'd be looking into Zurich-based Dignitas. If my mind stopped functioning properly, I'd be none the wiser and would be unconcerned, but I would only hope that I wouldn't burden my family too long."

for entire article, follow this url
http://www.saultstar.com/ArticleDisplay.aspx?e=1070476

on a recent episode of the TV show "House", Dr. House was ruminating about whether to save a patient from death and said "if he has ALS, he can expect a painful death, so maybe he should get out of his misery now"

On another primetime drama whose name I do not recall, one of the characters relayed that the mother of a friend had just been diagnosed with ALS, and says that the woman "wants to die now before she becomes a "locked-in burden to the family"

Perhaps the reason we are feared and make people uncomfortable around us [I even detect some anger from others when I am around] is that we are constantly presented in the media as someone who is going to die anyway, in misery, and better off dead, sooner rather than later.

I am going into my 5th year of this disease, am NOT a burden to my family, who live 20 miles away, and want to live as long as possible. Sure, I would never have chosen this, and life is not easy. But there are some of us doing remarkable things, yet the media portrays us as inutile burdens to society who should be euthanized. It's totally Hitler-ish!!

We need to do all we can to show that we continue to contribute to society even after ALS, are not writhing miserably in pain, and not all waiting for the grim reaper to deliver us from misery


and here is an article from the Associated Press

Assisted Suicide; Good or Bad?
Washington state mulls assisted suicide measure

By RACHEL LA CORTE
The Associated Press




OLYMPIA, Wash. - There isn't much John Peyton can do on his own except speak, and soon he'll lose even that.

The former Boeing computer programmer has Lou Gehrig's disease, which progressively paralyzes its victims. His doctor gives him three to six months to live.

He is using his last months to oppose a ballot initiative that would allow physicians in Washington state to help terminally ill patients end their lives. Only Oregon has such a law.

"What we're really doing I believe, is attempting to eliminate the sufferer so we don't have to deal with them," Peyton said.

Supporters need to collect about 225,000 valid voter signatures by July 3 to get the "Washington Death with Dignity Initiative" on the November ballot. The campaign has raised more than $1 million, more than enough for a successful signature drive, setting up a fiercely fought and emotional campaign.

Those in favor of the measure say that it's not meant to encourage people to prematurely end their lives.

"They are realistically accepting that their death is imminent," said Barbara Coombs Lee, president of the Portland-based group Compassion and Choices, part of the coalition supporting the initiative. "Knowing that, they want to protect themselves from unnecessary and unbearable suffering."

Outside Oregon, advocates of the idea haven't fared well. California, Michigan and Maine voters rejected the idea, and bills have failed in statehouses around the country. In Washington, voters rejected physician-assisted suicide in 1991.

LIC and Dinner for My Birthday

ferncohen.com
I find my stomach constantly in knots these days over money. I have some old debt and I have to use my $745 that Medicaid allows me to keep every month, and it isn't even enough to cover the minimum payments. A few months late and they put me up to the highest interest rate. So I wrote letters and said that I want to pay them off, but I need a better, more manageable payment plan. They don't respond, but keep sending me letters saying that my credit rating will hurt if I don't pay. Well, what do I need a high credit score for? It's not as if I am buying a house or a car any time soon.

I'm not looking for help, because somehow I have to get myself out of this. I incurred this debt when I was bringing in more than twice what I am getting in disability now. And I always paid more than minimum, or in full, on time. But now, I have to scrounge money sometimes just to be able to buy groceries. As I said, this is my problem, and my problem alone, but it has my stomach in knots, and telling my aides not to pick up the phone when it rings. Maybe it's a blessing that I am stuck in the house most of the time, so I am not tempted to spend money. And it's not going to get better any time soon -- it can't. Oh well...I've investigated refinancing, but I am told that any extra money I get, will be income, and will have to be given up to Medicaid, who always looks to be "paid back". And now they are telling me that I have to start paying $109 more to the home care agency. I don't know where I am supposed to get that money from.

On a positive note, I passed another birthday, so I am grateful to be here another year. And I am not saying this to get birthday greetings -- the birthday is over. Last Saturday, my dad took the whole family to dinner here in Rego Park for my birthday. His cash gift saved me until my next disability check. Yesterday Louise and Judy gave up an entire day to go with me to the Long Island City waterfront, and treat me to a beautiful lunch at the Riverfront Restaurant. The nicest gift anyone could have given me was to get me out of this apartment, so I am grateful my birthday was a good excuse to go to dinner with the family and out to LIC for the day. And I look forward to Judy's weekly visits with me to Starbucks. I accept the fact that going out to dinner and a movie, or just out in the fresh air, is not something I am going to be doing this summer. And I'm grateful I got to see water yesterday and at the ALS Walk a few weeks ago, because I used to live for the beach. It was a hard thing to hear the truth a few months ago-- that I wasn't a very nice person when I was healthy. But I needed to hear it, so I could let go my feelings of abandonment from former "friends". It makes sense that they wouldn't want to come around with me in this condition, when they weren't crazy about me before. I guess they're not such uncaring selfish people after all. I always laugh when I hear caregivers say that they want to get their patients out, but they don't want to go out. I want to say to them "Come on over, and take ME out". It takes a special person to go outside with an ALS patient because we inspire such discomfort in other people. I wish I could say it was different, but it's not.

Thank goodness I stayed in my apartment. I have come to accept that I just won't see the inside of the bathroom or kitchen again. There's nothing I can do about that. Remodeling is out of the question forever -- costs too much. I ave been using my time inside to write,, but that is becoming the dream that won't happen either. Self-publishing costs an outlay of money, and I'm not sure anybody would buy my book anyway. There are so many books out there by ALS patients who have huge networks of support, and a lot more to say. Anyway, I trudge along, grateful to see another birthday, but wishing I could find a way to make it a little more pleasurable. I feel that I have no right to self-pity when other ALS patients are dying around me. I try to be grateful just to be alive.

Who is this man?

a- German ambassador to the UN
b- millionaire businessman
c- serial killer
d- politician
e- all of the above
f- none of the above

answer next week. in the meantime, send your guesses.

No more lithium, thank you Ted Scott F*** You Too

ferncohen.com
please go to my content producer page at Associated Content, read, or at least click on, my articles.....I need clicks!!

Yikes! I didn't know so much time went by since my last update!
On Saturday, May 17, a few of us went to the first Walk to D'Feet ALS in Manhattan. We really lucked out on the weather. especially since I was out the night before in the pouring rain [more on that later]. I didn't really put together a formal team. I wanted to go also because it was a walk along Hudson River Park, and it turned out to be a beautiful walk.

The night before, I and my aide Lynette went as invited guests to "An Evening with the Stars", thrown by ALSTDI [Therapy Development Institute]. I am going to be an Ambassador for them. I had my training in a videoconference call.

Last week, I met with Jim Presbey from Extra Hands for ALS. This is a program that has been running in the mid-West for years. They run it with a local high school, and match a pair of students with a patient. The students do tasks for us, like chores, or helping do a project, or just go out with us. I figure they can do certain things the aides don't do. Maybe I will even have them paint one of my walls, which is a mess.

I'm giving up on lithium. This was experimental. According to an Italian study, low doses of lithium showed promising signs of slowing progression I am being weaned off. I noticed that I felt weaker since I have been taking it. Also, I was having trouble getting in the extra fluid. So since it was probably making me feel worse, and drop off to sleep several times a day, what's the point?

We lost another of our group. Mark Nurse was 36. He had been a surgical technician and wasn't married all that long when he was diagnosed. In fact, his 3-year-old son was born right before he got ALS. His aunt Sheila, mom Molly and wife Laurian used to come to our group. Last month Mark came with the family and we all knew he didn't have much longer.

Awkward moment at the annual shareholders meeting of my co-op. There was some stupid woman complaining about the automatic door downstairs [the one they installed as a result of my 21-month journey with the NYC Commission on Human Rights] Recently the door was out of service for several days, and you do have to make an effort to pull it shut. Well, this woman yells "What do we need that door for anyway?". Ted Scott, our brilliant [not] board president, must have repeated 5 times "that door was not our choice. We have a lady in a wheelchair who brought Human Rights here, and we had to put it in"...gee thanks Ted! and at one point he added "we tried to fight against the door, but we lost the fight".....am I being totally delusional when I think "isn't he embarrassed to say that? why can't he say 'we put that door in to accommodate our disabled residents"' mind you, i see people being pushed in manual chairs in my building. They need that door more than I do. Have you ever tried to push a wheelchair and hold a door at the same time. And I'm sure the mommies with strollers appreciate the door, as well as people using canes and walkers. I wanted to scream out "if it were you or a member of your family, you would want that door". So when the board president, idiot that he is, singled me out, don't you think everybody turned and stared at me? And if you think one of my neighbors said "you know, that could be YOU in a wheelchair some day", think again. Not one neighbor came to my defense or to challenge our ass of a board president. Thereby solidifying my belief that each of us is truly alone. If we don't fight for ourselves, nobody will.

more on Feb 0७, १९६४

Apparently I didn't know the extent of the mania at JFK airport that day. The Beatles arrived on PanAm at 1:00 that afternoon....It is still freaky that my class was on a field trip that day, unsuspecting that there was such pandemonium!

Anyway, I found a great video of the Fab Four when they arrived at JFK
check it out here

Saturday, I did half of the last day of the Ride For Life. It was so nice to be out and around the city. Lately, I have only seen the city from the inside of an Access-a-Ride bus. We met the group at Columbia University and rode to Columbia Presbyterian Hospital. At the University, there was a moving ecumenical service. Then we walked or rolled to Columbia Presbyterian, where there were sandwiches and salads for dinner. It was so nice!

My UTI still won't go away. I am on my third round of drugs. I feel wiped out, and very depressed, like a black cloud following me. I just wish I could hire a companion to go to a museum, a park, or a neighborhood to explore. I am grateful for Judy who comes to take me to Starbucks once a week. I wish there were field trips for ALS patients. Anyway, I am grateful to be able to stay in my own apartment, and not have to go to a nursing home.be But I wish I could make it nicer. Little things like hanging pictures would make it more attractive.

Monday my aide Cheryl [Ellita's mom] called Verizon for me to take features off my landline telephone, and put me on a per-call basis, because I hardly use it and I don't use long-distance except to fax my bills to the NYSARC Trust. I am trying to get some of my other bills trimmed, so that the $725.00 I am allowed to keep can go a little further.

Saturday May 17 is the NYC Walk to D'Feet ALS. This is the first one in the city so, even though I always do the Long Island Walk in September, I am going to this one it's a good excuse to spend part of a day along the Manhattan waterfront. I wish I didn't have to depend on events and friends to get out. I have always been able to make things happen on my own. The worst thing about ALS is loss of independence, and having to wait to be invited somewhere.

I am disgusted by the way I look. Because I can't get in front of the bathroom mirror anymore, I don't often get to see myself. I caught a glimpse of my reflection in a store window yesterday and I can't believe what I have turned into. Suddenly I understood why relatives and friends are staying away. I have lowered my food intake so much, but the pounds are just not coming off. There are exercise classes for disabled women, but they are pricey. I just can't figure out how to burn off the calories. Of course it's hard for me to apply eye makeup, and my skin color looks unhealthy from too much time inside. And I didn't think that hugely obese blob in the store window was really me, but it was! I am just ashamed I let it get this far, and lost such pride in myself. And I can't figure out how it can ever change.

My kitchen is not my own. I got to take my first shower on Tuesday in several months. It took two aides, but we did it. I can make the situation better by replacing my sink and vanity with a wall hung sink, and by removing the wall hamper, but the cost would be prohibitive. The aides don't want to get me in the shower again. The "no rinse" solution is drying out my skin, and I am reading that showers are essential to slough away dead skin, and prevent pressure sores. We took the bathroom door off, so I can get the wheelchair right up to the doorway, but once inside, it's a cooperative effort of two aides working together, and they are afraid of dropping me. I'm sure my new elephant-sized body is doing nothing to ease that fear!

Wheelchair Woes

ferncohen.com
Wheelchair Woes:
So my wheelchair has been at Rehabco for more than 3 weeks already.
Yes, I got a loaner from ALSA, but of course it had no mount for my Mercury communication device, so that meant that everywhere I went, we had to load the Mercury in the carrying case and put it on the back of the wheelchair, then take it out and set it up everywhere. Poor Judy. On our weekly trips to Starbucks, she had that duty. AND it was so slow, if you were walking beside me you had to move in slo-mo!! To go take blood and have my hair done on Austin Street, it took one hour to get there! Good thing it was a nice day! BUT then, on the way back, one of the footrests fell off in the street. So I emailed ALSA and they just brought me another loaner and took the slow one back!!

BUT, I just heard that my own wheelchair is coming back Thursday!! yay!!

Ride For Life is up in the air. RFL doesn't have loaner chairs this year, so I have to make sure my wheelchair is right and if all is okay, I will join the ride on Friday afternoon in Queens, and up to Yankee Stadium. It all depends on my wheelchair battery. I may only do half-days because I don't if my battery will hold up, and there are no back-up wheelchairs if I get stuck. Then on Saturday I hope to ride over the Brooklyn Bridge and up to Columbia for the closing ceremony, or at least to the end of ride party at Columbia Presbyterian..But this is all very ambitious, so I have to play it by ear. Since I haven't really done the fund-raising I did last year, I might scratch the whole deal. I am becoming very casual about plans and goals, because when you are in my position, things rarely go as planned.

I am into my second week with the lithium. This is an experimental treatment for ALS. It is the same lithium that they give patients with bi-polar disorder, but it is a smaller dosage than for bi-polar disorder. But nevertheless, lithium can be toxic so I have to be carefully monitored. It can affect the liver, kidneys, or thyroid, so it wouldn't be worth the risk if it damaged any of those organs. Also, I have to make sure that I am taking in enough fluid, and you know what that means.....

I am going into the "Ambassador" program for ALSTDI [ALS Therapy Development Institute]. I am invited to a big fundraiser at the Museum of Natural Hitory on May 16 [$200 a ticket], which is going to be very nice. For information on ALSTDI, click here

Nutty Neighbor, Clinic Visit, Medicad is Bleeding Me

ferncohen.com
It's been an interesting week for sure!
First of all, please show your support by clicking on my newest articles. On Associated Content, I wrote about finding your "googleganger", which is someone with the same name as you. You can also read about the day I met my googleganger at college, and the maddening result. Use this link
and you can read my metblog posting about a new African restaurant in the Meatpacking District. It's not a review because I will never get to go there and try it out, but maybe someone can, and report back to me. Check out this link.

Saturday night, I went to an extended-family seder given by the family of a friend and her husband [he has ALS]. It was nice; we took Access-a-Ride, and Ellita liked gefilte fish -- go figure! And because we had to leave before the main course, Sue sent us home with three containers of food. True to Access-a-Ride, we had to be outside at the scheduled pick-up time, but waited for forty minutes outside when we preferred to be inside eating. But, if you are not out in front when they arrive, they leave. I have frozen in sub-freezing cold, gotten soaked in pouring rain, and sweated in sweltering heat waiting for transportation.

Monday was my quarterly visit at the ALS clinic. I will be starting the low-dose lithium as soon as my pharmacy gets it in. I have to have weekly blood tests for a while, then bi-weekly, then monthly. My biggest challenge will be taking in the extra liter of water daily. I will either have to thicken it, or put it through the PEG. And then there is the peeing.....ok TMI....

Monday night I saw the urologist for my persistent UTI. I have to have two sonograms -- pelvic and stomach. For the stomach, I can't eat for 6 hours before, which I can do. But, for the pelvic, I have to drink [or put through my PEG tube] 10 cups of water, and then hold it until the test is over. I've done this before, and it's not fun!! I hope I can do this!!!! I'm not in my 20s anymore......

According to Dr. Scelsa, my muscle function is stable from my last visit, which is great news! My next visit is July 14 [Bastille Day]. It's hard to believe how this year is flying by!! I am starting this week on the experimental low dose of lithium that was studied in Italy. I will have to get my blood tested every week for a while to make sure it is not damaging my liver and kidneys. On top of that, the urologist says i have to go for two sonograms -- a stomach and a pelvic. For the pelvic, I have to drink, or put in my tube, 10 cups of water, and hold it until the sonogram is over. I don't know how I am going to manage this.

And there is another thing I don't know how I am going to manage. Out of the $745 that I am allowed to keep every month, which is used up by old debt payments at the highest possible rates, I now have to pay $109 every month to the home care agency to keep my home care. I don't know where they expect me to get this money. My hair is already a multicolored overgrown mess, because I have not had the money to get it cut and colored. I have nothing but Old Navy tee shirts that fit me, because I can't buy anything new. I guess it's a good thing I lost friends, because I wouldn't be able to afford to go anywhere with them anyway. I just don't know what else I can possibly give up!

Anyway, I finally got some sleep last night, after several nights of having to call the police on my upstairs neighbor who was blastng her TV so loud all day and night, that my apartment shook! My super finally talked with her daughter, who is going to take Mom for a hearing aid next week, thank God! So if everybody could just click on my Associated Content articles, it would help me! And if you know any crafters, tell them to go on eBay to bid on my rubber stamps and other craft supplies I am selling off! My seller ID is fec139. I have the first chapter of my book done. If I could only have a quiet place to work without the TV going [aides have to be occupied], I would be fine. I am thinking of having the aide drop me off at the library sometimes with my laptop [they have wi-fi], just so I can have a few hours of concentration!

February 7, 1964 [part one]

I remember the day I was born. My birth certificate says I came out of my mother's womb on June 7, 1955, but the date I was born was more than eight years later -- February 7, 1964. We all have days that change our lives, and the world, forever. I do remember a day about three years earlier when someone shot our president, and that was supposedly changed the world. I remember a lot of people on television crying, even men. All of a sudden John Kennedy's face was everywhere. And I remembered he had a little girl around my age. I recall briefly wondering how it would feel to have your dad shot to death, and see it on the news. But my dad wasn't the president, and I couldn't imagine why anyone would want to kill a mailman like my dad. The only person who got angry with Dad was Mom. So, although I felt sad that a little girl and her younger brother had to lose their daddy, I can't say that it changed my life any. I played with my friends and went to school as I had done before the president got shot.

Anyway, these days that change your life always start out to be very routine. We almost never wake up and say "This is the day that will change my life". If we wake up and think "this day will change my life", it won't. I knew this Friday morning was going to be somewhat exciting to an eight-year-old in the fourth grade, but I didn't realize how much it would change me; as a matter of fact, this day would change America, and was part of something that would change the world forever. My world, and the way I looked at life, was about to be flipped around in a way that I could only begin to fathom many years later.

Mrs. Hazelcorn, my fourth grade teacher, took us on a lot of field trips that year --probably one a month. She needed to enlist a lot of moms to go on the field trips. And this was the sixties, when most moms were home. I think Ellen Wallach was the only kid who had a valid excuse; her mom was a teacher. Teaching was the acceptable career in those years for a Jewish mommy; otherwise, they just stayed home, and most of us had a mom in the house when we got home from school. I liked going to Ellen's house after school, because she had a key and her mom would come home a little after we arrived, so we could do whatever we wanted for at least 45 minutes to an hour. I didn't appreciate the fact that my mom was always home. I wanted Ellen Wallach's life, with my own key and an hour to do whatever, with no mom there to breathe down my neck. So Ellen had a valid excuse to say that her mom couldn't go on class trips. After all, Mrs. Hazelcorn couldn't go on her kids' class trips. But she wouldn't accept my mom's reason for weasling out of her duty -- that I had a baby sister at home. "Mrs. Hazelcorn wants to know when you are going on one of our trips", I would tell my mom. "You tell Mrs. Hazelcorn that if she wants me to go on a class trip, she can hire me a babysitter." End of subject.

So I set out that day to PS286, the Jane F. Shaw School, in my neighborhood of Sheepshead Bay in Brooklyn. Dad insisted on calling it Idlewild Airport, even though less than three months before, the name was changed to John F. Kennedy Airport. Dad said he never liked those Kennedys. They were bums. Their old man hated Jews. It was sad that President Kennedy was assassinated, he said, but those Kennedys were no damn good anyway. I didn't care what they called it, I was going to an airport for the first time in my life. Mom told me I might see people in foreign costumes, like the ones in my book at home "Children Around the World". "Look for women in saris, or people in African dress. You might see a Frenchman wearing a beret, or even a Dutchman with wooden shoes, or a Japanese woman with a kimono", Mom said. I told her I would look for those things. I got even more excited as we walked onto the bus, and Mrs. Hazelcorn told us that we were going to try to get into a real airplane!

I got my AFOs[ankle-foot orthotics] and stretchy shoes to wear with them. They make a huge difference when I stand and transfer, but I want to have some physical therapy sessions to see if I can take a few steps with the walker using them. I figured out that if I remove the bathroom door, I can get my wheelchair right up to the bathroom door. Then I can just get a shoki screen at the beginning of the entrance to give privacy to the aides when they use the bathroom. We are not allowed to pay the super or the porter to do odd jobs anymore, so I need to find a handyman. And if I replace my sink and vanity with a wall-hung sink, that will free up more floor space. Also, I need to remove the hamper and fill in the tile where the hamper was in the wall. All this will be way more manageable in cost than the renovation that I had planned. It will probably only cost a few hundred dollars. I am going to the ALS clinic tomorrow, so I will see what the PT there says about PT sessions. I already have a prescription and referral to a place in the neighborhood from the podiatrist, but I want to consult with the ALS PT.

I actually went to a Passover seder last night. Since ALS, I have not been to a seder. So my friend Sue Turin, who is caregiver to her husband Rob, who has ALS invited me. It was a family seder of about 25 people, but they rent a room in a temple in Glen Oaks. Ellita and I took access-a-ride and it all worked out perfectly. I've really felt very left out, every Passover since ALS, because it is my favorite Jewish holiday. I have a lot of Jewish friends, but for whatever reason, no seder invitations. So when Sue invited me, it was a nice surprise, and it really meant a lot to me!

Last weekend, I had my weekly visit to Starbucks with Judy, something I look forward to every week. I also went to Applebee's with my neighbor Lisa. Gulshan called from India to say that her husband's brother, who sustained injuries from the accident he was in with Gulshan's husband, now also died. So she will be over there another two weeks. I really miss her!

I went back to the internist today. The blood pressure was 144 over 88. This was acceptable to her, but it's still too high in my book. It should be more like 125 over 75 or 80. So I am still trying to lose weight, and keep the stress level down.

I am trying out my new braces/AFOs [ankle-foot orthotics]. I have a prescription for physical therapy [as much as they will cover, which usually isn't much] and the foot doctor recommended a PT right in the neighborhood. But since I have my ALS clinic appointment a week from Monday, I will wait until I see the PT there, in case he has any recommendations about what I need, and if I need to go to a more specialized PT.

Something I am perturbed about is the UTI that still persists. The doctor gave me a whole different antibiotic to take for 2 weeks. And I also have an appointment with a urologist the night of my clinic appointment. I am so not-thrilled with this. About 20 years ago, I had persistent UTIs and I was under the care of a urologist for about 2 years -- not a favorite time of my life, I have to say. But, I have felt more weak and tired than usual, and about a week ago I had an unexplained ache in my side. I thought I had pulled a muscle, but it might have been this infection.

Today Chelsea is worrying me. She seems more sluggish than usual and this afternoon she did something that looked like a convulsion, or maybe it was a series of sneezes. Either way, it's worrisome, so I am going to have to call the rescue ladies

Last Monday, Rehabco called to say they were coming the next day, and I was thrilled to be getting my wheelchair back. But someone came on Tuesday and said he was here to pick UP my chair! I said "this chair is a loaner from the ALS Association. It isn't even your chair!". He called his office and sure enough, it was an error. My chair isn't ready yet. I am still stuck with this chair that is slower than molasses.

Donated $20 to Idol Gives Back. It made me feel good to be giving rather than receiving. I am so thankful for everything I receive!