Thursday, January 31, 2008

clinic visit

January 27, 2008 was the fourth anniversary of my ALS diagnosis!!

The next day – January 28, I had my quarterly appointment at the Beth Israel ALS clinic. There were several things I wanted to discuss. The first thing was the recent promising study coming out of Italy. All the details are here . Anyway they are using lithium to stop or slow down ALS progression. Dr. Scelsa agreed it is very promising. Lithium is the drug that treats bi-polar disorder, but the dosage they used in the ALS study is much lower than that used to treat bi-polar disorder.

Dr. Scelsa can give me the drug, but it can be toxic. So my blood would have to be tested often—every week for the first four to six weeks, and every month thereafter. Possible side-effects are tremors, seizures, fainting, among others. It can also be hard on the liver and kidneys; that is the reason for the frequent blood testing. I welcome anybody’s feedback, especially if you want to read the info on the above link. I have not made a definite decision yet.

I will be seeing my primary-care physician on February 6, and I will also ask him what he thinks. My therapist, Dr. Livingston, who works with some patients on lithium, is very cautious, and wants to see the studies. The reason I am seeing my PCP next week is not too thrilling. You see, I have always had very low blood pressure. But in the last year or two, it has been creeping up. Now it is at a “dangerously high” count, according to Dr. Scelsa. So next Wednesday I go to Dr. Joseph and endure the three-hour wait to go see him, and get blood pressure medication. Feedback welcome here too. Anybody take blood-pressure meds? Which ones? What are the side effects? Getting old sucks, but consider the alternative.

I also have orders from Dr. Scelsa for a complete blood workup, which I have to take to my local lab. I went to get fitted for AFOs [ankle-foot orthotics] which I hope will stabilize my ankle so I can take a few steps, maybe even get into the bathroom?

I questioned the PT about the way I am sitting in the wheelchair. He agreed that I need serious adjustments. So I am hoping I can go to the wheelchair clinic at Mount Sinai Hospital when the Rehabco rep is there.

AND, I gained weight, which is another reason why I hope the AFOs will help me to take a few steps. I have cut out the nighttime snacking. I have been totally disgusted with myself for a while, so this was a real wake-up call!

So lots of phone calls and appointments. With my diminishing energy level, it hasn’t been easy.

Friday, January 25, 2008

My Dad Turned 80

Today is my dad Irwin's 80th birthday. Yes he was born January 24, 1928. Like all depression-era dads of the Jewish persuasion, his mantra is "Don't buy me anything; I don't want you to spend your money." This would not be so annoying if I knew something he wanted, so I could just send it to him. But the man has no interests besides the Disabled Veterans,of which he is an officer, his grandchildren [my sister's kids], and reading. I was thinking of sending him Tom Brokaw's new book "Boomer" because I know he will enjoy reading about the 60s, when he was a young-ish dad. But he thinks buying books is a waste of money. "I can just go to the 'liberry'", he says. Oh, what to do........

Anyway, I thought it might be cool if a bunch of people wished Irwin a happy birthday. If you would like to do that, email me and I will give you his email address.....

all this got me thinking about a life that began in 1928-- a year before the Great Depression, and lived through WWII, the 1950s,1960s,1970s and through to the new millennium.......
so I wrote an article you can read here

Thursday, January 24, 2008

My Dad's Eightieth Birthday

Today is my dad Irwin's 80th birthday. Yes he was born January 24, 1928. Like all depression-era dads of the Jewish persuasion, his mantra is "Don't buy me anything; I don't want you to spend your money." This would not be so annoying if I knew something he wanted, so I could just send it to him. But the man has no interests besides the Disabled Veterans,of which he is an officer, his grandchildren [my sister's kids], and reading. I was thinking of sending him Tom Brokaw's new book "Boomer" because I know he will enjoy readin about the 60s, when he was a young-ish dad. But he thinks buying books is a waste of money. "I can just go to the 'liberry'", he says. Oh, what to do........

Sunday, January 20, 2008

In Memory of Suzanne Pleshette aka Emily Hartley

I heard today that Suzanne Pleshette died and a few memories came back.
First, I remember how much she was a part of my 70s life, as Emily Hartley, wife of psychologist Bob Hartley of "The Bob Newhart Show". When I was at SUNY Stony Brook, few people were around on Saturday night on campus. Stony Brook was a real suitcase school, one of my biggest mistakes in life. But that's another story. So I and my boyfriend Jeff Nahmias would go over to Roth Quad and look to see if Bob Komitor and his gang were around for the weekend. We would get drunk or high and watch "The Carol Burnett Show", "The Mary Tyler Moore Show", and the "Bob Newhart Show". And of course after 1975, we watched "Saturday Night Live"

So today made me think about the seventies. And also about the first time I stayed up to watch "The Birds", that scary Alfred Hitchcock movie. Suzanne Pleshette was in that too, as Annie the schoolteacher who rents out a room in her cottage to Tippi Hedren. That movie freaked me out so much that my mom had to feed my pet parakeet, Davy Jones, for two weeks because I couldn't go near him!

Thursday, January 17, 2008


This is a quote from an email sent to me by a friend who is caregiver to her husband who has suffered multiple strokes:

“A stupid thing that someone said to me recently - "I had a really fun party but didn't invite you because I didn't think you would want to upset your schedule." This person has a ramp going into her house (was used by her deceased husband).”

This goes in my “stupid things people say when they don’t know what to say” file.

Something nice happened last Saturday. My friend Michelle stopped by on the way to have lunch with her uncle and dinner with some friends. She only had about an hour to spare but stayed a little longer. Finally she said she had to leave because she would be late for her lunch appointment. But then she said something nice. She said that she really wished she could have stayed longer, because we were having a nice discussion about why it is so hard to make friends nowadays, how rude cellphones have made people, and how the way a person interacts with us can indicate the other person’s hidden agenda and shortcomings. So, even with my Mercury augmentative communication device, we had a thought-provoking discussion. And, I was amazed at Michelle’s patience with me and the Mercury!! It was so nice to hear someone speak positively about spending time with me, and not looking uncomfortable at all.

Speaking of which, at my support group meeting Tuesday night I told Jody that if I feel a coughing fit coming on, I am going to leave the room. What people don’t understand is that the coughing is the way my body gets rid of secretions, since it doesn’t “come up” normally, due to the ALS. These coughing episodes always end in a productive elimination of mucus, but it takes a lot of coughing to get to that point. I am not dying or choking to death. When I am home, I use my Emerson Cough Assist to do this. That machine has become my best friend. But when I am out of the house for any length of time, the accumulated mucus causes my body to spasm into coughing until it all comes up. The irony is that when I am no longer able to cough, I am in trouble. So if I can, I will leave the room, stay away from the machine for shorter periods when possible, and understand that certain people just can’t take it, and not be hurt when they don’t come around. I can’t help this any more than I can help being in a wheelchair. If this “freaks” people out, it is their right not to be around it. It doesn’t make me, or them, bad people.

On Sunday, Judy Lewis took me to lunch at Appleby’s. Since they always sponsor the ALS Walk to D’Feet, I am trying to patronize my local Appleby’s on Queens Blvd as much as possible, and I would like to encourage everybody to do the same at their local Appleby’s.

On the other hand, I am distressed to find out that Barack Obama did not sign onto the ALS Registry Bill. Our people at ALS National are trying to contact him to find out why. Jody tried to call his office, but they wouldn’t speak to her because she is not Obama’s constituent. However, this does become an issue outside of Illinois when the man runs for President of the US. I am urging all of you to see how these people voted on the issues that are dear to you, whether it be ALS, breast cancer, animal rights, gun control, health care, or whatever. Actions speak louder than words. Look at what they have done. Hillary, by the way, supported the registry, albeit a little late in the process.

Sunday, January 13, 2008

Lessons from "Law and Order" About Being There for Someone

"Forced to Sit Still and Shut Up
Last week I was watching an episode of the TV show "Law and Order". A detective was killed, and Eames, a regular character on the show, went to pay a condolence call to the widow. Eames is a female detective, whose police-officer husband was also killed in the line of duty 10 years earlier. Eames' husband and this latest victim were partners. After the death of her husband the then-widow Eames received the obligatory visits from the police officers and widows; but after that, everybody became strangers to Eames, who stayed in the force and had to look at a lot of them every day.

Anyway, when Eames went to see the widow, the widow told her that she was so sorry that she just couldn't come to see Eames when Eames was mourning. Furthermore, she admitted that, when Eames' husband was killed, all she could think about was how grateful she was that it wasn't her own husband who got killed. Now the tables are turned, and Eames is there for her. Then she said those familiar words, "I just didn't know what to say"

That really hit home for me. In 1976, when my mom was first diagnosed with breast cancer, and at a time when people didn't talk about breast cancer as easily as they do today, my mom told me that people said those words to her. She once told me that a long-time friend, whom she ran into a few years after her mastectomy, said "I'm sorry I never called, but I didn't know what to say". I have heard that too.

When a friend is going through a serious illness, divorce, or even a death in the family, we often don't know what to say. I once called a friend, whose father had just died and said "I dont know what to say, but I'm so sorry", and she replied "just what you said was all I needed". Maybe when we don't know what to say, we should express that. But I learned that we need to say something, even if all we can say is "I don't know what to say."

But maybe the conflict is deeper. We are happy it's "not me" who has cancer, found out the spouse is cheating, getting a divorce,lost a job, etc. But another point I think this "Law and Order" episode was trying to get across: it may not be "me" this time, but it might be some day. And Eames, while she was holding the hand of the widow who never came to hold her hand ten years before, was saying "I forgive you for not being there for me." I got the impression that Eames could be a comfort to this new widow.

And maybe, there was an even bigger message here: People cannot always be there for us because of their own personal agendas. And we can't always be there for them. I was forced to think of everybody who went through bad stuff. I paid the condolence calls and sent the cards. But I don't know how much I was really "there". But I do know that after my mom died, I made more of an effort to "be there" when a friend lost a loved one. Because now I can say "been there and done that; I know how it feels". And it's natural that no one knows what to say to me or how to act; they've never been around ALS before. When I cough, they think I'm choking, and probably afraid I am going to die. I just say "I'm okay. It's just ALS".

That said, I have decided to put memoirs on another blog, entitled "Forced to Sit Still and Shut Up", which is another way of saying "ALS forced me to stop running and look at myself, and stop running my mouth and start to listen."

Forced to Shut Up and Sit Still

I thought I would start by telling why I chose this title.
All my life, I have been running, always busy and always talking.
In January of 2004, I was diagnosed with ALS/Lou Gehrig's Disease. But this blog is not about that; I have a separate blog for that called Living With ALS, which you are welcome to read too.
But since I am now confined to a wheelchair and cannot speak anymore, I have been forced to shut up and sit still, and reflect on my life as a boomer [born June 7, 1955]

I will first open with a paraphrase of a question posed by the John Cusack character in the film "High Fidelity"



Wednesday, January 9, 2008

Strong in the Broken Places

When I was in DC in May, we met up with Richard Cohen, who is the husband of the Today Show’s Meredith Vieira. Richard was in the process of writing his book, which is now released. Called “Strong at the Broken Places”, it is an account of five people who are living with chronic diseases. Richard himself has multiple sclerosis.

One of those five people, Denise Glass, is living with ALS. You can watch a video online about the book, and Denise here

The Today Show has been profiling the five people from Richard Cohen’s book all week. According to Cohen, the book shows that chronically-ill people are not their disease and should not be defined by a set of symptoms. He also says that, although the book deals with the changes that come about as a result of a chronic diagnosis, the person inside is still there. Amen!!

Saturday, January 5, 2008

A New Year

A New Year. The only resolution I am making is to make no resolutions. I will try to live one day at a time, and have no more hopes of anything getting any better or any easier. It’s freezing in my apartment. There is a huge draft coming through my air-conditioner. The building management says the staff isn’t allowed to do any private work for any of the residents. I never heard such a thing! I can’t hire them to cover the damned AC!!!! And Chelsea’s corner is really cold, so I have to move her whole housing setup/ And I can’t hire them to do that either.

I had to go to Manhattan Thursday for an appointment and stood in front of the building in the bitter cold waiting for the Access-a-Ride van. Once again, I looked at the lobby that I couldn’t enter without a ramp; it’s times like these that really remind me of inaccessibility and barriers. A simple thing like shelter from the cold is so out-of-reach because of two little steps, and a co-op board that refused to put in a small ramp. I can’t help thinking that, if one of the board members or a member of one of their families, was suddenly wheelchair-bound, that ramp would be there in no time flat.

Nancy’s house for New Year’s Eve was great. Nancy, MaryAnn, and the other guests did everything they could to include me in their conversations and other doings. Even though I had Gulshan with me, These are not people familiar with ALS; I am the only person they have ever known with ALS. And they are not a community of social workers, just a group of people of different ages, occupations, and backgrounds. A few of the people have known me a few years, and some had just met me. I wonder why it’s so easy and natural for some people, to deal with a disabled person in their company, while for others, it is so difficult and stressful.

Another patient, Stan Silver, is in Calvary Hospice in the Bronx. A couple of weeks ago I went to visit him. He had a urinary tract infection and recovered, but he is too weak to go home. His wife Phyllis was his primary caregiver. She is at Calvary all the time, and other family members come in from other states to see him. I am praying that he will regain enough strength to go home and sit at his computer again.

Ethel Crowley, a fellow rider on the Ride for Life, passed away last week. She had children [who were also caregivers] and grandchildren. Some other people I know online have passed away too. We are not any closer to a cure, or even a more effective treatment. Every morning I wake up and know that I have another day to try to get through with a positive attitude. But it’s so hard when I have lost so much hope.

There are still little triumphs. Last week I was actually able to wheel myself close enough to the kitchen sink for my new aide Keter, to manage to wash my hair with real shampoo. We did have to use a pitcher, and we got a towel really wet, and water on the floor too. But it felt good not to have to spend a fortune at the salon.