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