THIS IS (like me)

How are some of you all dealing with fatigue? 

I can sleep for 10-12 hrs at a time. When I wake and then get moving around I tire very quickly. I am trying to keep working (I want to keep working) but I take so long to get out of bed & get dressed and I am already tired and I haven't done anything!

I have sent my doctor a message but I thought I would look to see how some of you guys have dealt with this, short of quitting work. Staying home bores the heck out of me.

Thanks,

Friday

THUMB

Today I wake up and it feels like I broke my left thumb. Out of the blue.

HOT AND COLD

I meet my mother at Penn Station on Friday afternoon on my zippy bike. I wait on the sunny corner of 31st and 8th for about 45 minutes as hassled New Yorkers wade their way through the anxious confusion of that seemingly lawless part of the city.

It's like a tragic MGM Gene Kelly musical. People get in and out of cabs in the same way but with various guises and bits. At one point, a woman jumps out of a cab screaming. She has cut her finger drastically on a metal part in the cab.

"Help! I need something! I cut my finger! I put my finger in that thing and it sliced right through!"
The woman runs toward Penn Station followed by her dwarf son. The cab pulls away and the next cab pulls up.

My mother texts, she is on 31st and 7th directly across from the Pennsylvania Hotel. I buzz around the corner and pass a block-long line of tourists waiting for cabs. My mother is not in this line. My mother is a half a block away.

I ring my bicycle bell. "Welcome to New York!" (ring, ring)

"Hello Son. Why are you ringing your bell?"

"I'm welcoming you to New York, Mother. Welcome to New York!" (ring, ring)

There is a thrill in the air of New York today. New York can take on multiple personalities. Today, the city is not a hassled work place, a crowded city of nasty overpriced rentals, today it is a big, exciting cultural, mecca on a tiny island full of hopeful possibilities.

"Mom, the line for the taxis is over there." I point to a crowd of over a hundred people.

"You mean I have to get in THAT line?"

I spot a lonely cab dropping off a passenger twenty feet ahead and grab it for my mother.

We skip the line.

Mom quickly stuffs herself in the back of the cab like she's making a (get away) and then she commands, "1 RIVER PLACE" - like she's saying 30 ROCK or TRUMP TOWER (Jeeves).

(I explain to the cabby that it's the last apartment building on 42nd Street before the river). We both speed away but I get home (on my electric bike) a full ten minutes before they do.

My apartment has been scrubbed clean for my mother.

She sits down and (at once) begins an adversarial relationship with the cat... and the cat gets it. The cat understands. The cat likes it. She scolds the cat for clawing the furniture (like an angry grandmother) and the cat responds with intense love.

I make a lunch of tuna, avocado, walnuts and apple slices. We go to the roof of my building which has an amazing view of the city. I stand by the door and order my mother (who has the legs and stamina of a forty year old - of a woman (literally) half her age) to stroll the entire roof. I take pictures of her taking pictures.

We grab a cab and go to the MOMA on 52nd and Seventh.

I convince my mother that we need people chi. The bike path or park would be lonely. We need to be with the masses. We need to feed off the excitement and expectations of Friday night. And (besides) I love the MOMA, but feel shame for not discovering NEW art. THIS art has been christened acceptable. Still I like going there.

As we cab to the MOMA, my mother says (staring out the cab window into the dusty gloom of midtown) that the city is filled with a rainbow of different people, a real mix of types. I take the opposite view. Manhattan is filled with all the same people. They all look the same (to me).

My mother points to tall black woman, "she's different."

But in fact, I contradict, everything about her is just like all the other women on the street except her skin. She walks the same New York strut, she wears the same black clothes, she's even straightened her hair to mesh with the rest of the population.

We near 52nd Street by Fifth Avenue.
The cab driver having noticed my disability makes sure to drop us off directly in front of the museum.

The MOMA is packed with sexy, young,  international types. We find our way to member services.

We try to get tickets to "Taxi Driver" but I have the wrong day,"Lord of the Rings" is playing instead.

My mother is excited, she wants to see New Zealand. I tell her we could go the other film, it's more of an art film, more MOMA-ish. (In truth, it looks confusing and opaque but it IS sanctioned by the MOMA). My mother says she's never been to an art film and she really goes to movies just to look at the background. All movies are visual travelogs for my mother, plot and character, secondary.

We get our free member tickets and are on to the galleries.

We take three escalators up to the Jackson Pollock rooms.

I might have rented a wheel chair but I lean on my mother instead and she is remarkably strong.

(When I was a kid, my mother used to take me to "go sees" in the city. We were about the same height. But during those years, I began to outgrow her, and as I got taller, I would lean on her shoulder which she didn't like. Thirty-six years later I find myself leaning on my mother (again). And I apologize to her but (this time) she says "don't worry about it.")

We stare at Gorky, Rothko. and Motherwell. We talk about what we see and and what we like. I like the sheer graphic beauty. My mother likes discovering the hidden details. "Look there's a duck! And another eye! They ALL like to paint eyes!"

I think about that, why they painted eyes. I think about how vision is a (really) a poor sense, the one sense we overuse, the one sense we use to judge, but really, it is the most deceptive. I've begun to let go of the physical, as it becomes less and less attainable for me.

Also (I think) one has a relationship with a painting.

You eye the painting and the the painting eyes you.

The huge Pollock seems more wonderful to me than ever. Like he stumbled on G-d. This painting represent the beginning, the end, eternity, and everything in the universe.

My mother spots some video art. "I love these! They sell them in the art museum in Naples."

"That's video art." I say to my mother with caustic condescension. "It's a big deal." I tell her "my friend CAR wrote her dissertation on Video Art."

"Really? ... well, I like it. It reminds me of the ocean. You know? Soothing... the way the clip keeps repeating over and over.

We find our way to the shop. My mother buys Frank Lloyd Wright playing cards for her bridge club.

It's time for our movie.
The MOMA movie theater is always filled with the very young and the very old, both groups looking for a cheap ticket.
My mother go to the ladies room while I find seats. I sit in the third row from the back on the aisle. I chat with some young girls. They tell me the movie is three hours long. (we'll never make it)

A little boy with missing teeth wanders up to me asks what movie I'm about to see. I flush and feel on the spot, like it's a trick question. For a moment, I can't remember the title. And the then it comes to me,

"Lord of the Rings?"

He nods and scampers back to his father sitting three rows down. The father gives me a "thank you" smile. It's clear they were afraid they had ended up in the wrong theater. They were afraid they might be in the "art film" theater.

I hear an unfamiliar voice calling out my name. "CHARLIE?... CHARLIE!!"

I turn around and see a MOMA usher with my mother by the entrance, twenty feet away.

I put up my hand up (half-mast). "Yes, I'm right here." If I whispered, they would have heard me, I was that close.

I see my mother make the silent words "There he is" and thank the usher.

She sits down. We sit in silence. My mother is hoping I'll quickly let it go. But I won't.

"Mom, I'm just curious, where did you think I went?"

"I couldn't see you."

"I was sitting right next to the door."

"I know but I couldn't see you. I looked twice, I couldn't see you."

I shake my head using the "I give up" expression. I'm Oliver Hardy to to my mother's Stan Laurel.

(Did she think I was kidnapped? Did she think I ran away?)

Lord of the Rings begins and it is beautiful and engaging. But it is obviously divided into three acts. We leave after the second act. It's nine o'clock. It's time for dinner.

We go to the Modern next door.
I've always wanted to eat there. The dark, chic dining-room and bar is bustling with the rich and the sleek. (My mother notices that everyone is skinny). The modern is filled with fitted suits and sexy shoes. You're plop in the middle of drinky, privileged Manhattan.

The restaurant is always booked but they do have (first come - first serve) tables by the bar.

I hold onto my mother's shoulders as we navigate our way through the bar to a low candlelit table.

We order wine. Or my mother does. I can't read the menu. My mother can. She had her eyes fixed. I found myself the entire weekend asking my mother, "What does this say? What does that say?"

Our waitress is friendly but all business. She tells us the chef, Gabreil Kreuther won best chef NYC this year.

We order Scottish Salmon with horseradish scallops, and Grilled Diver Scallops with corn, cherry tomatoes and morcilla sausage. The wine glasses arrive oversized (love the drama of the oversized wine glass). The food portions arrive absurdly small. This too is dramatic and would normally suit me except I am losing weight by the minute and need to keep weight on to prolong my life.

We talk about my dad. How one fall in a parking lot has changed their lives.
My mother is worried that HER life will never be the same again.
I mention to my mother that I may have my OWN problems.

So...

I compliment my mother's physical strength, her walk! She's so lucky. I describe for her a recent memory of walking with her, my father, and aunt and uncle, at the Ritz in Naples, Florida. My mother walked like she was two generations younger than the others. I couldn't get over it. My mother attributes this to her years as a dance major, from forming her core strength as a teenager.

After dinner, we walk past St. Thomas Chruch to find a cab. Fresh flowers have been left behind the locked gates for the weekend services. I take a picture of them. It makes New York seem so small and quaint. So "Our Town".

On the elevator ride up to my apartment we run into Karen.

She's an actor I've worked with in summer stock. She watches me struggle into the elevator and can't hide her pity.  She knows. How? I don't know. But instead of saying, " Hey! Wow! Are you okay? Did you hurt your leg?" She pretends nothing is wrong. This is how I know she knows.

I am hot and cold to her.

I'm not sure why.

soho

Nancy
Originally uploaded by Charlie Roberts

Central Park

Central Park
Originally uploaded by Charlie Roberts

moma

moma
Originally uploaded by Charlie Roberts

Happy Birthday

My mother hangs a sign on my living room wall.

It says,

"Happy 80th Birthday!"

(my mother is a child of the depression)

Barack Obama
Originally uploaded by Charlie Roberts

the journey

I bike to East 42nd and Second Avenue to see my doctor at the Alternative Medical Clinic. I go for my weekly dose of gluthotione IV or "a push" as they call it because the glutathione doesn't drip from a bag, a nurse sits next to you and slowly pushes it into your vain. I get a b12 shot too.

If you want to know more about glutathione and why you should eat tons of broccoli and kale, take a  look at this link.

http://www.youtube.com/watch?v=Eh2PYQBICWs

As I bike across town, something's not right.  The ride is no fun. I am stuck at lights at virtually every intersection. I almost get hit by a bus. (If I 'd turned left to look behind me, that would have been the end of me and my terrible disease). The bus and car exhaust is invasive. This can't be good.  I'll use 40th or 44th next time.

At Second Avenue, the the block between 42nd and 43rd, is barricaded. (The CIA, The General Assembly).  My appointment is going to be hard to get to. Abrasive security is everywhere.

I zip past my doctor's office and lock my bike up (what seems to me like) miles and miles away.

As I lock up, a woman with a cigarette says, "nice bike, that's a REALLY nice bike... I like the color... white. That's a really nice bike."

The woman is in her late thirties. She's open and sloppy and flirty, and she looks like the kind of co-worker that you can never find at the office. She looks like the kind of co-worker that when you throw a fit, because you can't find her, it doesn't really phase her, she stays in the ether of sloppy, languid, fun girl.

"How far can you get on it?'

"Twenty miles"

"So... what? That's about from where to where?"

"Well, it's only a couple of miles to SOHO, so you can use it pretty much all day. Next week I'm planning a ride to Williamsburg."

(I've made an appointment to visit the artist, Talia Lempert)

http://www.bicyclepaintings.com

"No kidding, WOW! That's really nice. How you going to get there?

"I'm going right over the Williamsburg bridge. Should be pretty easy."

"Oh, wait. (she stops smoking for a moment to get her bearings, to reconsider)

Wait,  I thought you were talking about Williamsburg VIRGINIA, I thought you were going to go...  I thought you were going to bike all the way to Virginia!"

(my brain quickly scans to see the if this would be possible... I'd have to knock on a stranger's door every twenty miles and politely ask to plug my bike battery into a vacant power outlet.  It would require charm and persuasion.  And then it takes two hours for the recharge.  I'd read and nap!)

"No, just Brooklyn." - I'm losing patience with smoking girl. She's just using me for idle entertainment while she gives her job the slip.

"Well, I gotta get going,  I don't move fast so... so... I gotta get going."

And like a physical punch-line in a vaudeville sketch, I move from my bike to "get going" and I move at (half the speed) of the (slowest turtle).  After about a minute or two, my smoking friend has not moved and I haven't got more than 15 feet away.  She watches me without changing expression or giving up the rhythmic comfort of her cigarette inhilations. She's figuring -  but she's not letting on that she's figuring.  Finally she asks, "Hey... you want some help there?"

And given my epic journey ahead,  I say .... "sure."

I put my hand on her shoulder and we begin a sort of dance, a pas de deux, down 44th street."

"Hope you don't mind the smoke."

This partnered walk is strange and intimate. This is the opposite of who I am (normally).

This kind of shared closeness is usually reserved for longtime friends and elderly parents.

But given my situation, I gotta be open to anything that will help me get to my destination.

I gotta improvise.

As we near Second Avenue we pass her co-worker. (I brace myself for the "and who is this? conversation but the co-worker doesn't notice me (really).  She's racing back to work from lunch.

(So her co-worker is helping out the handicapped, who has time for details).

"Hey, did you hear they called a meeting?" she asks without stopping.

My smoking friend mumbles something, but not much, she is still intent, still enjoying our small journey.

But after a nine or ten more steps, she ruminates, "Meeting" she says to no-one in particular,  "I don't like that sound of that.  A meeting around lunch? That's not a good sign.  Never a good sign. Not these days... if you know what I mean."

I feel so removed from THAT kind of anxiety,  that in a way, I DON'T know what she means.

At Second Avenue, she steps on her cigarette and leaves me at a police barricade.

"Thank you so much. I really appreciate it." I say, not looking her in the eye.

"No problem, have a great day, okay?"

Our journey completed, we must both face the near future alone.

She'll get into a lengthy and sloppy discussion with the lobby doorman at her office building and be late for her meeting. I'll have a chat with the elevator operator about where O'bama stays when he is in the city.

"The Waldorf, there is special suite suite for the president at the Waldorf."

LITHIUM, results are disappointing

A Randomized Clinical Trial of Lithium Carbonate with Riluzole versus Placebo with Riluzole in ALS Shows No Benefit.

In February 2008, Dr. Francesco Fornai and colleagues at the University of Pisa, Italy, reported in a pilot study that lithium carbonate at dosages of 300-450 mg daily (titrated to a plasma level of 0.4-0.8 mEq/liter) combined with riluzole showed a large positive effect in people with ALS (Fornai, F., et al., Lithium delays progression of amyotrophic lateral sclerosis. PNAS, 2008.105(6): p. 2052-2057).

To further investigate lithium carbonate as a possible treatment for ALS, a randomized, blinded, multicenter trial of lithium carbonate with riluzole versus placebo with riluzole was conducted in people with ALS in the U.S. and Canada. The study used similar dosing to the Italian study. The study was conducted by the Northeast ALS (NEALS) and Canadian ALS (CALS) Consortia and was sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health, The ALS Association and the ALS Society of Canada. This unique collaboration between investigators and funding organizations resulted in a novel study design and expeditious execution of the trial to efficiently answer a critically important clinical question. Study leaders included Drs. Swati Aggarwal, Lorne Zinman, Jeremy Shefner and Merit Cudkowicz.

An interim analysis was conducted after enrollment of the 84th subject and presented to the NINDS Data and Safety Monitoring Board in September 2009. Based on the interim analysis the trial was stopped for futility. This study did not show the same beneficial effect of lithium carbonate on the progression of ALS as the prior pilot study conducted in Italy.

Although the results are disappointing, it was very important for the ALS community to quickly and efficiently determine if the large benefit first observed for lithium could be replicated in a well controlled trial. With the ongoing assistance and commitment of patient volunteers, researchers can now focus on other promising therapeutics for patients with ALS.

(www.ALSA.org)

WHOLE FOODS

photo.jpg
Originally uploaded by Charlie Roberts

LABORATORY

My electric bike saves my ass. I love it. It really gives me complete freedom.
Everyone should get one.

Today, I biked to Staples on Sixth Avenue.
So fun and (normal feeling) to be wandering around Sixth Avenue.
(Wandering is stretching it) teetering, is what I mean.

The good part about being (disabled looking) is the attention you get from store employees. It's almost like they're trying to head off a lawsuit or protect their display tables from the klutzy blind man. As soon as I make my entrance, I am attended to. I play it up.  I act the role of the the humble, soft spoken gimp with a heart of gold.  I can't be a bad person, I can barley walk. I couldn't hurt a fly.

At Staples, they immediately escorted me to a handicap elevator in the back storeroom. They sent me down in the tiny dismal chute alone. It was like going down in a trash compactor.  At check out, the cashier randomly gave me a $4 discount.

And people continually ask me (strangers on the street) "Are you alright? Do you need help?"

Which is a good sign for society I guess, but it leaves me continually swatting people away.

At the vitamin store on Seventh and twenty-fourth, I sat down by the window as a lovely lady with an elaborate polish accent ran around and got all of my requests.

She told me to take Boric Oil? and recommended the book "Anti-Oxidant vs. Cancer" by Ralph Moss.

My terrible disease allows me to become chummy and intimate with strangers in seconds.

She asked me the name of  my disease, and when I named it (I almost whispered it) she told me " Ife neveaire he-ared uf tat bevore."

"It's rare" I again whispered.

There were people around so I didn't want to get too emphatic about how terrible a disease it was.

And there was some absurd relief at her ignorance. Maybe if I moved to Poland I wouldn't have this disease.

I told my polish friend that I am now taking so many anti-oxidants I am worried (I said suppressing a smile) that I would die from vitamin poisoning. We BOTH found this funny.

(Lately I have found myself smiling for no good reason and this worries me. This is how sweet, dying, old men act - (of course I'm taking three tablets of St John's Wort, a day - so maybe that's why I'm giddy).

I went to the Whole Foods next door and bought all rice products because I've decided to go (no-gluten or dairy) again, to see if it will help. Now that I eat at home (mostly) the diet will be easier. On PLM, losing weight is a big topic. So now I eat even when I'm not hungry.

And finally, I went to CVS on 42nd and Tenth and picked up baby Tylenol. It contains Acetaminophen. Which (in theory) protects neurons from oxidative stress.

I came home, cooked a whole chicken (organic free range) and swam in the pool.
My juicer came in the mail, as did my urban organics food box. (One of the doorman carried it up for me without asking). My kitchen is a laboratory of organic fruit and vegetables, supplements, herbs, oils, filtered waters and wholesome nutrients.

I need to see a neurologist to ask about meditations and get my FVC tested and check my blood, etc.

But I feel pretty good.
I'm starting to do more research. For instance, calcium can actually cause problems for
my disorder. So I stopped taking calcium magnesium and just got the magnesium (today).

MY HEAD

Send me your cell when you have a chance. I got laid off 2 weeks ago and suddenly have bountiful time on my hands...want to hang out? I could come by...I'm going to LA for some loving from G this Sat and am back Oct 1. How's your head? 
KC


Sorry to hear about your job. You'll do great. Don't worry. If you can, pray or meditate about it. The right thing will happen. Sure I want to hang out. I can meet for movies and coffee. You just sort of have to hold me up. My life is eating full time and taking vitamins full time and reading shit about my shit on the internet full time. And my head is okay. It could be the insular bubble I'm in, but right now, I feel okay. I bought a battery operated bike which is so great. I love it. I can get anywhere in the city no problem; I hired a cleaning lady. We clean together. And I am living just one day at a time. I want to travel but my head is in permanent "now". I can't seem to grasp future. Future tense never enters my language or thoughts. So that's me.  
CR

KITCHEN CLOCK

photo.jpg
Originally uploaded by Charlie Roberts
I bought this at the Darien Thrift Shop for $4. Meh.
Phoebe put a new battery in it and hung it up for me.