Saturday, February 23, 2008

"Definitely, Maybe" Brings Me Back to the Clinton 90s

This past Sunday, my friend asked me if I wanted to see a movie. I jumped on the chance to go out and see something outside the four walls of my studio apartment. You see, I have ALS/Lou Gehrig’s Disease and I am confined to a wheelchair. Can’t really go anywhere alone, without a friend or my home attendant. My home attendant is nice, but she doesn’t share my taste in movies. I like independent films, and films I can talk about later. She prefers films that take her away from a boring hum-drum job, silly films that remind her that she can dream of a better life than taking care of me. I have many friends, and they do care about me, but from a distance. Since becoming disabled, I’ve had to accept that most of them can’t be bothered to spend time with someone who requires advance planning, can’t pick up anything I drop, and communicates by writing notes or typing into a machine that converts my text to speech [Lou Gehrig has robbed my ability to speak]. Most of my friends have raised their children already, and being with me brings them back to a time they don’t have energy for anymore in their 40s or 50s; they have to put the straw in my drink, fetch what I can’t reach, and help me put on and take off my outerwear. They’ve been there and done that, and they don’t want to deal with that, for someone who is older than first grade.

When I can take along my home attendant, it helps. But some people don’t want an extra person along. Furthermore, I have to pay my HA’s way, a hardship on my fixed disability income. So when this friend e-mailed me, I jumped. She is one of the rare people who will take me out, cut my meat if need be, and even deal with bathroom issues. But we had to choose a movie house within walking distance because wheelchair-accessible paratransit has to be booked the day before, and it’s not easy to get me and my foldable wheelchair in and out of her car. Pickings were slim in the immediate neighborhoods. There were lots of silly movies playing, but no thought-provoking fare. So I picked the lesser of the evils, a film called “Definitely, Maybe” because the TV ads were cute, and featured Abigail Breslin, who was adorable in the title role of “Little Miss Sunshine”, one of my favorite quirky films.

Well, it delivered as promised: a silly romantic comedy where the girls were cutesy and glib, and had those fabulous Manhattan apartments in the right up-and-coming neighborhoods. For anyone who is not from NYC, or has never apartment-hunted there, these apartments do not exist anymore, so don’t bother looking. At one time, you could brave an “edgy” barrio, complete with junkies and bodegas, in the hope that your persistence paid off if you stuck it out [and lived] for the next ten years. At least in Manhattan, there is nothing like this anymore. And even when it did exist, no young person without a trust fund could afford anything without one or more roommates, and for a stair-climb below the third floor.

But I managed to enjoy this movie. The two quirky love-interests, played by Isla Fisher and Rachel Weisz, weren’t gorgeous. And the guy, played by Ryan Reynolds, was cute, but by forty he would look as tired-out and world-weary as any guy you know.
But the part I liked most about this film was the time setting. You see, the main character moves to NYC from the Midwest to work on the Clinton campaign. By the way, that’s Bill, not Hillary. Yes, think back to the presidential campaign of 1992, which was an unbelievable 15+ years ago. Remember when we all wanted change from Bush? Does this sound eerily familiar? I remember it well, but what I really remember vividly is where I was the night of the election.

On that Tuesday night in November of 1992, I was watching the returns in the lobby bar of the Pier 66 Hotel in Fort Lauderdale. I had to get an absentee ballot when my boss at Cayman Airways told me I would be out of town for a sales blitz. I was Northeast USA Area Sales Manager, and I knew this trip would be my last hurrah with this company because they announced they would no longer be flying non-stop out of New York. So it was a time of change for me too. In fact earlier that day I set up an interview with another company by phone; I would meet with them when I returned home to New York.
What was so momentous about that night in the Pier 66 bar was that I was the only one happy about the outcome. My bosses were all staunch Republicans, and this was terrible news to them. My immediate director kept insisting I would keep my job, despite closing up the JFK Airport operation. But I didn’t trust that. When I found a job with another airline, I learned that they never hired anyone in my place.

I remember where I was on Bill Clinton’s Inauguration Day. Now a sales manager with a Chilean airline, I was making a sales call to a travel agency owned by an Ecuadorian immigrant. She had brought in a TV that day to watch the swearing-in of a new president. She felt, as did I, that this was a new era for her adopted country. We both watched William Jefferson Clinton take his oath of office amid a feeling of hope and optimism.

In the film “Definitely, Maybe” the scene jumps to 1994, and then the Monica Lewinsky affair. By then, I was a sales manager for a hotel chain, and I remember sitting around with my colleagues discussing this scandal. There is also a scene from the movie where the couple is listening to Kurt Cobain, and then she gives him the sad news some time later about Cobain’s death. I can recall sitting with those same co-workers discussing that death. For me, the optimism and change represented by those Clinton years was so real. As I write this, it doesn’t look as if Hillary is going to perpetuate that legacy. We are once again anticipating an era of change, albeit not with a Clinton in the White House, but with Barack Obama. Once again, I am hoping for a change from Bush, this time the son. “Definitely, Maybe” transported me back to a time of hope and optimism. I want that feeling again. I am hoping November’s election can give us that.

Thursday, February 21, 2008

blood pressure, movies, blinds

I have been taking my blood pressure faithfully every day. Despite the 25mg of toprol daily, it still stays at 155-177 over 90-120, which is a potential stroke-in-the-making. I have been trying not to eat junk, and we even cut down on my tube feeding formula. I went with my aide to the grocery yesterday and bought low-fat yogurts to snack on. It’s so tough to get the weight down when you can’t exercise.

This weekend was a long one for the working people out there. So on Sunday Louise was able to take some time, due to the extra day to do errands, and we went to the movies to see “Definitely, Maybe”. It wasn’t my first choice, but I limited myself to the two theaters within “walking” distance [i.e. not needing Access-a-Ride]. Anyway, I’m not a fan of romantic comedy, but this film takes place in the Clinton years, particularly 1992, 1994, and 1997. I know exactly where I was in those years, so it all brought back memories for me. And it means so much when anyone takes time out to get me to Starbucks or a movie, or anyplace outside my four walls. I am never alone, because my aides are always here, but companions to go with me to the mall, to lunch or dinner, coffee shop, the movies, are special. Without that, I can certainly keep myself occupied and even amused, but I am limited to my apartment, which needs improvements [see last paragraph].

I had a triumph this week. For months now, I have not been able to shower or wash my hair. I have been using dry shampoo, and doing sponge-baths with a product called “No Rinse” which I now come to find out is not for long-term use due to the fact that it doesn’t slough away dead skin cells. Therefore if I were bedbound, I would be more prone to bed sores. Anyway, that dry shampoo could never take the place of water and shampoo, and my scalp was always itchy. A couple of weeks ago, I convinced one of the aides to let me get into the kitchen with my wheelchair, which just makes it but if I’m not careful it scrapes the walls [ the walls are a mess, by the way]. And we managed to get my head close enough to the sink that she could use a pitcher to shampoo my hair. But it was a mess, because I couldn’t get my head over the sink, so there was lots of water on the floor, and my clothes got wet. Well, yesterday, after 10 days of no hair-cleaning [I really hate that dry shampoo], I found a better method. I found that I was able to stand while holding on to the sink long enough for the aide to shampoo my hair while my head was totally over the sink. It was fast, it was easy, and now I have clean, shiny hair for a while. Now if only I could get my body into the shower I would be very happy!

I heard that my fellow patient, Mark Nurse, was in the hospital with pneumonia, but he is recovering at home. His wife, mom, and aunt took turns staying with him at the hospital. An ALS patient should never be left alone in a hospital, especially if he can’t speak. I learned this when I was in the hospital having my feeding-tube put in. Nobody knows about ALS, and I had nurses yelling at me, and talking around me as if I couldn’t hear or understand. Even though I had a sign over my bed that said that I could communicate with my writing board, my board had been moved out of my reach, and it was horrible. So an ALS patient must have someone there at all times that knows the disease. Next time I land in a hospital, I will make sure there is someone there with mr always, even if I have to pay my aides out of my pocker!

On Friday, I had my reassessment interview for Access-a-Ride. I was interviewed by a psychologist. Did they think ALS is a psychological illness? Anyway he kept asking me how far I am to the nearest subway station. I said “it is not accessible, so why are you asking me?” He said “just tell me where it is, and what the name of the stop is”. Then he kept asking me for the names of my medications. I pointed to the part of the application where I listed all my drugs. He said “Just tell me the names of your medications. I want to see if you know what medications you take”. Maybe I should have played dumb.

Oh.I forgot something very important. My neighbor Lisa and her new husband Barry treated me to new venetian blinds, and Barry put them up for me. Thank goodness! There are so many other small improvements to make, like moving things around, hanging pictures, and new area rugs, and it frustrates me because I can't do it. So I am at least very appreciative of the blinds!!! The other stuff, well, I'm sure I can figure it all out...

Thursday, February 14, 2008

Of High Blood Pressure and Another Friend Gone

I went to Dr. Santos and got my blood pressure meds. She gave me Toprol. So now of course I am reading up on a health topic I never had to concern myself with. But I guess that happens when you age. Health concerns that never were an issue become important. It’s no longer just vanity driving my efforts to lose weight and eat healthy. Now it’s a matter of health. So I have had a banana each day, and last night I ate an orange for my nighttime snack. The thing that really annoys me is that I am limited in ways to burn calories.

I got my AFOs [ankle-foot orthotics] aka braces. But now I need special shoes, which are $150 a pop, not covered by insurance. Ouch!! I am hoping these will help me to take a few steps into the bathroom to the toilet and maybe even into the shower [although the turn is torture!]. I would be so happy to be able to take a shower again, and wash my hair. I am also going to try to get a prescription for some physical therapy to learn to walk with the AFOs.

I registered for the DC Advocacy again. But this time I will go on Monday and home on Tuesday after the meetings on the Hill. I have to see if I’m strong enough in May. Ride for Life is the following week [I can only do the NYC leg], and the first Walk to D’Feet in Manhattan the day after the Ride ends. I may or may not form a team for that one, since my Long Island team is sort of a tradition, but I will definitely go there to join in the festivities. That is, if I have enough energy after DC and the Ride. I don’t know if I am as strong as I was last year. I do know that I want to take a more leisurely train time down to DC, and make an earlier train back. The late arrival last year into Penn Station was a nightmare!!

Tomorrow I have my second appointment for my reassessment with Access-a-Ride. A contact at Disabled in Action, an advocacy group for the disabled in NYC, who is also president of the Disabled Riders Coalition, read my story and called some big kahunas at the MTA and Access-a-Ride, and they called me personally to guarantee that I would be seen within 90 minutes tomorrow. And they also extended my privileges again. To paraphrase the H & R Block TV ad campaign, it’s good to have “people”

Paid a shiva call to Phyllis Silver, whose husband Stan passed away a couple of weeks ago. This one hit me hard. Stan and Phyllis and I did the Ride for Life together two years in a row [but Stan did the entire ride both years, the Walk to D’Feet t2 years, and last year we were all down in DC. Phyllis was his devoted caregiver for two years since his diagnosis, and his sole caregiver for all but the last six months when they had to hire some help. I even met them at the Metropolitan Museum of Art last summer for a really nice day.. Phyllis will still come to support groups, and she will still go on the Ride and to DC. The ALS community became another family to her. But Stan will be missing. I can still remember their first support group meeting. Mine was the first face they saw. I also remember how seeing me freaked Stan out. This is always a potential issue with support groups: that the recently-diagnosed [who may not have met any other PALS yet] risks coming face-to-face with the future. In Stan’s case, he wasn’t as spooked out at my wheelchair as much as my inability to speak. He asked me how soon after diagnosis I lost my speech, as if the pattern were the same for all patients and he could plan his future by my timetable. I assured him that even though I lost my speech early, no two patients were alike in their progression. But ever the computer programmer and analytic soul, Stan wanted a formula he could use to predict what was next.

Wednesday, February 6, 2008

No Entry at the Doctor's Office

Ever have one of those days when you knew you should have stayed in bed? Well, today is one of those days for me!

First thing this morning I went to get out of bed, with my aide’s help, and in my wheelchair. This is my routine every morning. Then, I drink down my instant breakfast, take my morning pills, bathe, dressed, and begin my day, such as it is. Well, this morning, my ankles just refused to cooperate. My feet kept giving out on me. I kept trying and trying, but no luck. Long Story short, it took nearly two hours for me to be able to take the two steps necessary to do the transfer. Now it is after 10 and time to bathe. There are parts to the bathing process where I have to hold on and stand. By now, I am so weak and so stiff, that once again my feet and legs refused to behave. Result: it was about 11:30 before I was ready to do what I had to do, and get ready to go to the internist to attend to my blood pressure.

After finding out at my last clinic visit, that my blood pressure has shot up to a dangerous level, I immediately called my primary-care physician [whom I have not seen since right before my diagnosis]. The earliest appointment he had available was today—10 days later. I thought “ok, I would like to take care of this quicker, but I’ll wait.”

So my aide and I set out for the doctor on a day that is unseasonably warm, but threatening rain. Now unfortunately I didn’t remember that there are four steps going to the doctor’s office. I have encountered that before, but there was always another way, eg. through front door of apt building, through basement – something! Well, here, there was nothing! No way for me to get in. I find this surprising, since Dr. Joseph is also a rheumatologist, and thus treats patients with arthritis. And I could swear I have seen patients in his waiting room with canes and maybe even walkers, but maybe not wheelchairs.

So now not only have I not taken any measures re my blood pressure, but I have to find a new doctor!! I hope this day gets better because I don’t think I can take any more!!

Monday, February 4, 2008

Does the frustration never end? Access-a-Ride, NYC’s paratransit system is, in most cases, my only way to get to appointments, the ALS clinic, my support groups, or even that outing to meet up with friends. I am attaching a letter which I am prepared to fax to them if my friend’s phone call doesn’t fix the snafu. But, it isn’t enough to deal with an illness and disability; these ineptitudes are doubly frustrating

I have also posted this on the yahoo group DNNYC [Disabled Network of NYC] which runs the disabled activist group DIA [Disabled in Action]. And if that doesn’t work I will contact my city councilwoman.

I think everybody who reads this will understand why I am having high blood pressure, It’s also hard when you can’t speak fior yourself and have to count on a friend who has a busy enough day without having to speak for me.

To: Access-a-Ride eligibility unit

Sunday, February 3, 2008

Dear Sir or Madame,

I am writing to you as a wheelchair-bound Access-a-Ride member who has just been denied transportation to a very important appointment tomorrow. Since I have no other alternative way to get to Manhattan, I had to cancel this very essential weekly therapy session.

In late November, I received a letter from you that my eligibility would expire on December 31, and despite a confirmable diagnosis of a debilitating progressive neuromuscular disease [ALS], would have to be reassessed at an MTA medical facility. I called to get an appointment immediately and was told that I would receive an appointment in the mail. When I received nothing by early December, I called and your office apologized and said I would get a letter in one week. 10 days later, I called because I had received nothing. I was again apologized to, and promised an appointment again. I finally received a letter toward the end of December with an appointment for January 25 at Woodhaven Medical Associates, which I could only reach by Access-a-Ride van. I was assured that my eligibility would remain active until my assessment.

On January 25th, in bitterly cold weather, I arrived with my PCA for my scheduled appointment at 2:10pm. Following the instructions on the letter, I allowed 90 minutes for the visit; my return pickup was at 4:52. When we checked in at the medical office, my PCA was told that I would have to plan to be there for four hours, as they were backed up for more than three hours. My PCA told the receptionist that I had no transportation home if I waited all that time, so she was told we could reschedule. Please note that waiting at bus stops would have been dangerous for me in such bitter cold. My PCA then called your office and was told that we would receive another appointment in a week, which I still haven’t received. She was also assured that my eligibility would continue until my assessment.

We booked a trip for my therapy on Wednesday, January 30, with no problem. But when we called a while ago to book my transport for tomorrow, my PCA was told that there is a problem with my eligibility.

Please see to it that my eligibility is restored and that I get a new appointment. I am totally wheelchair-bound and need a lift. I go into Manhattan several times a month for important appointments, and have no other alternatives


Fern Cohen

update: Sunday night, I posted this letter to the DNNYC [Disabled Network of NYC] and I immediately got a response from Michael Harris, who heads up the Disabled Riders Coalition. He forwarded my letter to the head of the MTA and the Director of Access-a-Ride. My phone rang at 9:00 am on Monday morning that I am extended until the end of March. In the meantime I had asked a friend [Louise] to call, before I even emailed DNNYC. She called this morning, and they told her that I have an appointment to go back for a reassessment on Friday. February 15, at 3:20pm. This time, I am going to leave a 3-hour window and if I get out earlier, my aide and I can have a meal at the pub we found the last time we were there. When Louise called the Woodhaven Medical Associates to ask them for a realistic turnaround time, they insisted that we left before the van came, and went home on our own [by what means, I would like to know – We were at the pub eating]. And, they told her that if we had stayed, they would have gotten us in [why didn’t they tell me that before we walked out?]