COMMON SENSE

John,

I am going to DC. I will bring cameras. Maybe a video camera. I know how to edit video.

At the risk of sounding dense, I simply don't understand CLEARLY what all the issues are.

(In my defense, I live alone and take care of myself (right now). There is little time for me to investigate and research, and when I do, as you know, it's often hard to take).

I understand there is nothing for PALS. I understand the FDA is a lame slow government agency stopping PALS from getting needed experimental medication that has proven to be helpful.

I understand there is no public awareness of what ALS is. One million people contract HIV each year (sadly). People rarely die of AIDS anymore because of awareness and medical breakthroughs.

Just thirty thousand people (a year) get ALS. We have nothing. It is hard to be heard. I get it.

I understand the clinical trial system (as it is), is inappropriate for people with a fast paced lethal disease.

I am UNCLEAR who to be angry with and what steps to take. I hear about how inept ALSA is, but I don't know why. 

I am unclear of what the most important issues are. I suspect I will learn a lot in DC and I bet I will get depressed from what I discover and then enraged by how ineffectual everything is.

I am with you.

I am bothered when health care givers in the ALS world smile meekly at me and tell me to "live in the now! Be grateful for today!" - "Atta boy!" I pay them, and they blithely go off to their happy lives. Nothing is changing. There's something creepy about it. 

From your posts, it appears that you have taken on the research.  It would be helpful if you posted what changes need to be met. An outline of sorts. There needs to be thread about it. 

We need our own version of Thomas Paine's "Common Sense."

-Charlie

CAMERA

THE HUDSON RIVER

park

park
Originally uploaded by Charlie Roberts

LOGAN'S RUN

Jackie (my 72 year old neighbor) pops into my apartment to ask me if I need anything from outside.

I'm sitting on the couch with cushions piled under me so I can stand up again.  I'm reading threads on "Patient's Like Me" my ALS user's site. Jackie stands before me, animated and energized; like she came in to do a monologue. She tells me she had a dream about her father. He winked at her.

"He's trying to tell me something, but WHAT?! I just don't know. And Charlie, he looked so young!"

(pause)

"Do you know that everyone on the other side is thirty."

This I find hysterical. I laugh so hard I cover my mouth so I won't drool.

"WHAT?!!! It's true. Haven't you heard that before? I'm not making this stuff up.
In the next world everyone is thirty!"

"Jackie, what happens if you die at twelve?"

This quiets Jackie, but only for a moment.

"Charlie! I don't know. You'll have to read the book. Sylvia Brown. Have you read her?"

"No."

"You want me to get her book out of the library? I'm going to get you that book Charlie.  Sylvia Brown! She could really be important for you."

LUCY

I sit in the lobby of my apartment building because it's too cold to go outside.
I spread out on a low, round sofa and watch the tenants coming home from work.
I read about Stem Cells.

I find human biology fascinating but as I read, I'm alarmed at how little we know.
(We don't really understand how RNA directs DNA (I guess).

I've never paid attention to medical research.
I'd vaguely heard of the Genome project and Stem Cell treatment.
I assumed we were living in the age of "The Jetsons".

We're not.

There is much to be learned. And what occurred to me after getting through a third "Stem Cells for Dummies" is that in seventy-five years, we'll have it all figured out. People won't die from disease. In a hundred years, people will be appalled that people died from cancer or ALS.  Stem cells and gene therapy will change everything.

(The Bush Administration greatly slowed the progress for stem cell research. People will die because of Bush's religious convictions. I'm not interested in politicizing - but I despise Bush for halting stem cell research because he cozied up to Billy Graham.

* (I just read in "Stem Cells for Dummies" that Billy Graham has Parkinson's, another fatal neurological disease).

* (Bush didn't stop stem cell research. He actually allowed it to begin. But only with existing stem cells.
Most of these stem cells were ineffectual, too sick or too old? He also greatly restricted federal funding for research. Obama, overturned this in March of 2009.
___________________________________

Obama's move overturns an order signed by President Bush in 2001 that barred the National Institutes of Health from funding research on embryonic stem cells beyond using 60 cell lines that existed at that time.

Obama also signed a presidential memorandum establishing greater independence for federal science policies and programs.

"In recent years, when it comes to stem cell research, rather than furthering discovery, our government has forced what I believe is a false choice between sound science and moral values,"Obama said at the White House.

__________________________________


After reading for a couple of hours,  I try to stand up, but I can't. I can't get up from the lobby sofa. I can't find the strength.

Spiro (my doorman) has taken me on as his responsibility. Spiro is a miracle of human energy. (The New York Times should do a profile on him). He stands by the sofa waiting to assist, my walker at the ready, but no matter how hard I try, I cannot stand up.

Spiro places the palm of his hand on my heart and says with his crazy Albanian accent,

"It's okay."

I shake my head in disbelief.

"No, it's good! Take your time. I'm here. No worries from me."

And I can't help but grin. How is it that I can't get up from this sofa, but last week I could?
It's like some kind of gag. I'm Lucy in the freezer.

After much effort, my upper arms throbbing from overuse, I stand up.

BLUE

I wield my walker through the men's locker room hanging onto towel hooks and doors handles to steady myself. I feel plucky. I imagine the guys in the locker room both pity and admire me.

(My slow, solemn movement isn't me. I'm acting a role).

I shower and use the steam room.

I have a couple of friends in the stream room. Tonight I see .... um .... his name is a simple word like "Here" or "Have" or "Then" or "Above." I can't remember it now. Let's say it's "Above".

"Above" is dark and Israeli and kind of good looking. He's walks around nude and is so relaxed about it, it eliminates any lewdness. There is nothing naked about his nudity.

"Above" is kind to me, almost ingratiating: a gigolo looking for his next mark.

"Charlie! Let me get that. Do you need help. Here hold onto me."

"It's okay I got it. Thank you. I'm sorry I forgot your name."

"It's Above. Like the word! It's Israeli. When you think of me, just think he's not below, he's Above!"

(He must have to say this over and over. I could learn a thing or two from Above's patient disposition. I go dead in the eyes when people ask me about my name, which isn't Charlie, which is something almost as trying as "Above".

"Above! Simple enough. I think I can remember that." (I guess it isn't because I can't remember his name for this blog entry).

"Hey, what's wrong with your voice?"

(I haven't seen Above in a couple of months and my voice is getting weird).

"Don't tell me this thing affects your voice?!"

"Yeah."

Above hangs on and waits for more. He's drawn to me. He wants to hash this out.

I let it hang . What else is there to be said?

"Is that an Israeli accent?"

"Yes it is. I was raised in Brooklyn but moved to Israel when I was twelve. I've spent most of my life in Israel. Are you Jewish?"

"No. I often get asked that. I'm christian. I'm mostly English. But one of my great grandfather's immigrated from Whales. Some people say that the Welsh are the lost tribe of Israel. Have you heard that?"

This delights Above.

"No I haven't. I haven't heard that Charlie but I like that. Charlie, can I ask you something about what's going on with you? You don't mind talking to people about it do you?"

"Well Above, let me put it this way. If I were the color blue, people would be questioning me about my color. I 'd have to talk about blue a lot. It gets tedious talking about blue. I just got off the phone talking about blue. I don't always want to talk blue. Let's talk about you. How are YOU, Above?"

"Well, now that you mention it, I'm feeling very angry. My girlfriend, it's not working. We fight.

I can't take it anymore. But it's her apartment. She's in charge. I don't know if I can keep this up. I feel silly talking about problems with my girlfriend sitting next to you."

After my sauna, I plant myself on the one bench and begin the process of dressing myself.

Above pops his head into the changing area and says,

"Charlie, good talking to you. Feel good."

"You too. And best of luck with your love life."

"My love life yes. I will. And Charlie?"

"Yes?"

"Don't be blue."

STEM CELLS

Olivia -

I'm reading Stem cells for Dummies to catch up.

There is a reputable place in Monterrey Mexico associated with John Hopkins that's doing stem cells for ALS. PALS (people with ALS) rave about it, but there haven't been any meaningful results, as far I can make out. It's NOt the one in Monterrey that was on 60 minutes. Did you see that tonight?

I sent forms into to Louisiana and Atlanta for the FDA stem cell trials. I don't know if I should be bothering with more letters or how people get chosen.

According to some scientists it could be decades until they get a cure but they might discover something sooner to slow it down greatly. Like the AIDS cocktail.

Someone recommended I take cinnamon and honey every day. It's supposed to be good for your immune system. Cinnamon from the grocery store isn't really cinnamon, I discovered. And in large quantities could be harmful? (I don't know).

Thanks for going on the walk. I'm going to DC for an ALS Awareness weekend in May. I think I'll meet my New York state representatives. It should be cool. I'll meet a few of the people I've met on PLM.

Hopefully the weather will warm up.

So I can get to the park this week.

Maybe we can meet there.

I take my schedule a day at a time.

It feels like I have no time. I guess because everything takes me so long.

And I sleep nine of ten hours.

Charlie