playreading

Charlie,

Received package. Very excited! Will feed back asap. Any back ground on either play?

-Blue

________________________

Blue,
I really enjoyed "August: Osage County". It won the tony and the pulitzer a couple of years ago. When I read the play last week, the plot twists seemed melodramatic, but I didn't experience it that way in the theatre. The dining room scene is killer. I've experienced dinners like that with my own drunken family. The mother is a great character. And it was really fun to see it on Broadway because they presented the entire three story house on the stage.

"Beauty Queen" is from that Irish hitmaker Mcdonagh. He's a great writer, although his most recent offering "A Behanding in Spokane" wasn't good. The Times thought that he didn't fare well writing outside of his native Ireland. I did a scene from it three years ago. (Last thing I worked on in a class). You can see my line markings. Lots of kissing, as I recall. I worked on it in Austin Pendleton's class. Not so fond of Pendelton as a teacher -love him as an actor though.

When you read plays, by the way, if you can, the best way to read them is one act at a time, take a break to eat (or something), and then continue on with the second.

Today, I got on the effing bus #11 and went to the High Line. They have elevators. I also wheelchaired into my favorite barbershop in Chelsea and my barber, Max cut my hair and I remained in my wheel chair. Then, some shopping at Chelsea Market ... and took the #11 home. I feel like I've flown to Paris and back (in a good way). It was my first time on the bus with the wheel chair and it was scary only once.

When I got off at 24th. There was a car in the bus lane so the driver had to put the ramp down onto the street, the ramp was REALLY steep and I almost fell over as I wheeled off. The driver chewed out the driver in the car. I felt all vulnerable and noble as I wheelchaired by her.

And trying to cross streets in Manhattan? So many losers (cars) blocking the walk way! I wheel chair right up to the driver and point to the walk sign and then make the "what gives?" sign. They just look down.

Still reading "Howard's End". Not unlike present day New York. All of old London is being torn down to make room for modern apartment buildings.

-Charlie

Book Cover

Book Cover
Originally uploaded by Charlie Roberts

I enjoy the simple graphics on old paperback books.

summer

summer
Originally uploaded by Charlie Roberts

THE MAGIC FLUTE

This July day is hot and muggy and yet I wheelchair to the florists at the end of Actor's Plaza at 43rd and Tenth. But I don't go in. Once there, the idea of buying flowers seems flaky.

So I continue on to the new park by the Intrepid across the highway. I sit under a shade tree by some tables and chairs and a kind and warm woman with a small, obedient dog, points to a parakeet hidden at the top of the tree. There's a smiling Spanish man sitting beside me and some fat German tourists standing nearby.

We stare at up the bird, changing our positions to get the best possible view.

We then begin a small conversation of what the bird is called in our native languages.
Someone mentions a word that sounds like the  word  Papageno, and I mumble to the warm and kind woman, who is clearly our leader, "isn't that the name of a song in Mozart's "The Magic Flute"?

We kick that question around and then break apart.

I continue to look up to the bird, escaped - no doubt, and try to form a metaphor relatable to me but  decide we're not really in the same boat.

I wheel away to the other end of the park and duck under an evergreen to read "Howard's End".
I can hear the parakeet near me in the evergreens but I can't spot him.
But it's hot and I get sleepy and go home. As I leave, the bird soars away back to the other end of the park.

Later in the evening, Mattie comes over and we discuss possible treatments. These discussions are helpful but what I really need is a full time partner to implement these ideas because I simply do not have any energy.

The evening disintegrates, as it often does, with me calling out requests to straighten the bed, empty the trash, etc.

the Netherlands

Monday

Hi Pater,

Charlie Roberts here,

I am at that point where I am considering treatment. I just don't know what kind? I would participate in Monterrey but I haven't heard a single thing about outcome.

I know you went there. Has it helped?

And, have you ever heard of a single person with ALS getting better? through Stem cell or any other treatments?

Sorry to ask such blatant questions but I feel lost. (Like everyone else).

Life is pretty good.

New York is very hot these days, but I live on the Hudson River, so I scooter over to the river every day. It's great!

___________________________


Hi Charlie, 

Thanks for your message. Yes, i know where you are. It's very hard to find things that are hopefull. I found a lot of personal satisfaction in trying to find things together with my group. We found stuff about cholesterol that make sense, but no clue yet. Also we found the stemcelltrial in Monterrey. We believe it is one of the, or maybe the only credible trial at this point in time. though advancement is to be expected in the US I still think Monterrey is worth trying.

I'm not sure if i can answere your question. No, no-one is cured yet. And stemcells can't be a cure since the disease process will continue to destroy neurons, even the new ones. My progression was on hold for about 6 months after the trial. Now i sense it's coming on a bit. But i'm also a bit depressed the last few weeks. So i really can't tell you weather it's the disease or the mind that makes me feel weak now. I have slow progression.

I sent my MRI after the 6 month follow-up to the university of Utrecht to see if they can confirm that some new nerve tissue is growing, that's what the mexican neurologist states. But i just want to know if this can be confirmed. At the moment i'm considering to go back to monterrey for the spinal protocol. this makes more sense since i have spinal onset, so the damage will be mainly in the spine. The first 6 patients in the phase I of this protocol have been transplanted and i'm in touch with the staff to see if the procedure is safe. If it is i'll probably be in phase II early next year. I do want to give it a try and also help advance science. I can afford to pay the cost so that's not a big issue for me.

Also we are still waiting for the publication of phase II of the cortical protocol. This apperently takes much longer then expected. Perhaps it would be wise if you wait for this publication before making a decision about participating.

Be good and any questions welcome.



Best, Pater, The Netherlands

___________________________

Pater, 

Thank you for responding. It does seem like Monterrey is the only thing worth pursuing. I'll consider it.

I went to see a (famous?) naturopath in New York City. He is not out for money. His fee was minimal and there is a waiting list to see him. He's quiet and Russian (I think). He works from a holistic approach. I think he uses Ayurvedic and Chinese ideas. He has a doctorate in bio-chemistry. He told me he has helped many people with neurological disorders. He says that Neurologists look only at the disease. He looks at the whole person. He says that his patients who refuted the idea that they were sick, did better. 

Complicated. Right?

He looked at my tongue and took my pulse and prescribed an elaborate protocol for my spleen, liver and intestines. He rightly diagnosed that one of my lungs is weaker that the other. (I had a partial lung collapse three years ago). He recommended such an elaborated schedule of pill taking and colonics and cranial sacral therapy, that to follow it would be very expensive (which is okay) but it would take up my most of my time to stay on top of it.

I would go ahead and do it, but I hear the voices PALS on PLM and ALS doctors saying that it's useless -that food and antioxidants have nothing to do with ALS -that I will be wasting valuable time and money. And frankly, I would rather devote my days to reading and creative projects then standing by the sink three to four times a day, mixing concotions, swallowing pills, and sitting on the toilet.

I currently take many herbs and antioxidants of my own design. And I juice vegetables every day. It makes me feel good. It gives me energy, but I don' think it's stopping the ALS. I feel better, however, when I take them - like a cup of coffee.

And there is always that idea that - who knows how much faster the disease would grow if I weren't taking all my antioxidants.

All of this is confusing to me and makes me lethargic. 

Any thoughts?


___________________________________



Yes Charlie.

I have also considered the TCM treatments and have corresponded long hours with Dr. Ming of the TCM site. I tried their medicine once, but it was so disgusting that i popped it in the bin ;) He also says that TCM (traditional Chinese Medicine) approaches the whole person and not the single disease. I understand and i considered that TCM is already 5000 years old and there should be a nucleus of truth in their points of view. He told me that they consider ALS a condition of the liver and kidneys. So they figure once you are able to heal this condition you should be able to heal ALS. The only thing is that they are poorly documented and all they want is you to get in an airplane and come to them. the stories they publish are poor and very limited. I know one dutchman who went there for 3 months. When he came back he actually felt better, but a simple case of the flew got him and he was back to the starting point. He's on PLM too, his alias is pete-air.

I was very impressed by the dedication and professionalism in Monterrey. I had surgery from a robot so that the MRI guided injections were precise. They don't do that over here yet. Since i have spinal onset, like you seem to have, i want to go and do the spinal protocol asap. I'm still in a good condition so the sooner the better. I was one of the "best" patients they had and they told me it was a good thing that i was so soon. I didn't have progression in 6 months now, it was confirmed by my professor in Utrecht. I can't say it's thanks to the stemcells because i'm slow anyway, but i do believe they play a positive roll in my slow progression.

I also found that beeing hopefull is good for your physics. I can notice that when i'm in a bad mood, my fasciculations are worse.

there's another thing. We found that people who progress slowly and have spinal onset are often males who are overweighed. (that's me) We think there is a connection to cholesterol. We reported our findings in Utrecht and they are investigating right now. My dietician also is convinced and more evidence is coming all the time. In Berlin there were a few interesting theories as well. I believe that lipids in the bloodstream are beneficial for us because they maintain the myelin sheeth that surrounds the neurons. Which makes the neurons less vaulnerable for ca++ ions causing the oxidative damage. I hope you can use and study this information, i truly believe it is positive for survival. FYI, M&M's with peanuts contain 2% cholesterol ;)

I'm calling it a night, it's already way passed midnight here. Let's keep in touch.

Be good

Pater

pier 84

pier 84
Originally uploaded by Charlie Roberts

A view of my apartment complex from pier 84

hudson

hudson
Originally uploaded by Charlie Roberts

phone

phone
Originally uploaded by Charlie Roberts

ROAD KILL

I've been reading plays.

After baking chicken and zucchini in a white fluted pyrex casserole dish, I text Jackie and ask her to take it out of the oven for me, and put it on a plate, because that part is the most tiresome.

Jackie comes over, gathers the oven mitts, squints and holds her breath as she opens the oven.
(Jackie never uses her own oven).

I wait in my chair, calling out instructions but Jackie gets lost in a story about going out to dinner to an Italian restaurant in the West Village, Her son-in-law paid for a lavish group dinner.

"Must have cost $400!" Jackie says.

Jackie gets so carried away with the details of the dinner that she loses purpose and I am left, hungry and teased waiting for her to serve it up.

After dinner, I sit in the park outside my building on the very most west end of 42nd Street and read a play by Tracy Letts.

And after reading for some time, I check for an email (on my iPhone) from Blue Skies. She'd emailed earlier to ask how I liked my new doctor at Beth Israel compared to Mitzumoto at Columbia.

Recalling what I wrote to Blue Skies, worrying that I upset her (she works with Mitzumoto and loves him)  and  then recalling that final meeting with the Japanese doctor, I get into a rage all over again.
I wheel-chair back inside (lost in my head to the echos of our final confrontation).

Once inside the cool marbled lobby, I decide to read.

I choose a spot near the mail room.

Tenants come and go. Almost everyone calls out to Spiro, (our tireless doorman).

And then, two young women in summer dresses with lovely hair and makeup, approach.  And as they approach, they beam, in fact, they smile so openly and sweetly, I think, "my gosh, I MUST know them, otherwise their intimate smiles would be impertinent or plain crazy".

So, I lightly nod back at them, hoping they'll enlighten me and say, we met you through Jackie, or we live down the hall, or we know you through theatre - we go to NYU.

But the first one just beams, and the second one cozies up to me and points to my lap.

"I love that!" she chirps. She's in love with herself and her sunny, confidant pluck.

I look down.

"The play?" I mumble.

"Your chair! What you're sitting in! That looks like a lot of fun! I want one of those! "
(She may as well have winked and stuffed a dollar in my hand).

I can't retort. My voice is too weak.

And the ladies bustle off, high on life (no doubt) for taking time to boost the lame and disempowered.

Left for emotional road kill, I think, "Was she drunk?  No,  (I realize) she's clueless.
________________

I met with my cranial sacral therapist this afternoon.
After our session, he said he noticed anger in my body.

hudson

hudson
Originally uploaded by Charlie Roberts

grass
Originally uploaded by Charlie Roberts

BLUE

Hey Blue Skies,

I'm okay. I feel better today because it's cooler and rainy. Air conditioning gets to me.

How am I doing (ALS-wise)?

My speech is getting noticeably worse. My right arm is weaker than my left. I fell asleep on a magazine (a month ago) and I have a sore spot on my back that will not go away. Odd.

It's getting harder to do stuff. Putting pants on (a trial). Getting into bed (many stages to get myself there).

I've been on this big vitamin therapy (self prescribed - guess work), and some suggestions from a naturopath, but lately I've given up on it.

I guess I'm down-ish. Not terrible.

You know, I crawled into a bubble of my own making and I think it keeps me in drowsy denial.

Still, I've been short with people. A little.

______

I like Beth Israel. They are a little more together in terms of therapists and contacting me. The visits are smoother. And its a breeze for me to get there. The clinic is on Union Square. I like the doctor. McGowan. An Irishman in natty clothes. Kind and funny, but dismisses anything alternative. I told him about the naturopath and he had no real interest in the naturopath's suggestions, he simply asked me how much he charged. But I don't think he's up on things. I have this sense that all neurologists have given up.

I told him at my last visit, that ALS clinics need one more person to come through the room. This person would specialize in good news about research. This person would explain the possibilities out there for a break through. And each time you came for your visit, this person would have updates.

___________

I read about RNA in my book "Stem Cells for Dummies". That makes sense to me. I'd have to look at that book. The RNA gives the orders, right?

I want to understand it all. But I still can't bring myself to spend too much time doing research or even following the threads on PLM.

My brain (small and easily tired and distracted) has only so much room for daily focus. These days, I'm cursing myself for not being more well traveled or read. I can't write the way I would like to.

And I think I've been frustrated in life. And now I ruminate daily, trying to figure out how I could have had less frustration and more ecstasy? enlightenment? self acceptance? exploration of my potential?

I may try something serious. Monterrey? A more committed approach to therapies here in the city.

I've had my head in the hole again. Between dressing and eating, the days seem to get away from me.

Right now, I need to redo my apt for wheelchair.
And I'm trying to get away in August. But how? with my new borrowed electric wheel chair? It's too heavy to lift.

Sorry I went on so long.

I have an idea for a PSA. 

Yours,

CHARLIE_ROBERTS

COUCHING BRAD

Brad is my PT or physical therapist (temporarily).

Beth Israel prescribed him to me because a PT often comes with home health aides. If you need a home PT, it's likely you'll need someone to cook and clean for you.

At our first meeting, Brad asked me a series of questions, tapped my answers into a thick, computer notebook (like the kind a FED EX guy would use) and within seconds told me I had been denied a home health aide.

But I still see Brad.

Brad is my age, and looks kind of like me (only slightly heavier). Five foot seven, a hundred seventy pounds, curly brown hair and slightly epicene.

Through our sessions, I've learned that Brad made the move to become a PT in his thirties. (He was in publishing, PR, acting?) Brad maintains a professional taciturn countenance.

Yet it's easy to detect a certain malaise. Brad has a slight exasperated look, (the semi circles around the sides of the eyes, the nervous hesitation) of a man who is not exactly sure what he got himself into. Apparently it takes years to become a PT. Much of what Brad and I do on his forty minute is paper shuffle.

Brad takes my pulse, my blood pressure, my temperature.
He asks me if I'm in pain.  He inputs all of this into the notebook machine.

When I describe to him my former (very physical) life, Brad shakes his head and wallows in my disaster for some time and then says "it's not fair."

He walks me to the bedroom, lifts my legs onto the bed and we run through a series of exercises that would be appalling easy for almost anyone else.  But I huff and puff and (concentrate).

He holds my feet down and I lift my head towards my feet. I turn my head slowly to the right and then to the left.  I attempt to raise my hips in the air.  Brad sits me up and I hold on arm up and then the other. (This is exhausting).

We then go back to the living room to take my blood pressure again and fill out more forms.
I bank these receipts in white boxes I never look at.

I watch Brad pack up. He's slow and sad, like we just had a fight and there's nothing more to say but follow through with the inevitable physical act of leaving.

Brad I imagine, if I think hard about it, is disturbed by my illness. I imagine that I rate a few phone conversations with friends.

"You should see this guy"Brad might say relieved that his own ample body is in marvelous working shape) "it's such a tragedy. And he looks so young, He's getting worse and what am I supposed to do with him? Sometimes this job is too demanding, emotionally."

And because I envision these private conversations, I am distant with him.

But today, before he goes, I ask him if he has ever bought a couch.

Brad pauses and I can tell I've hit something.

"I saved for months" he opens up. " I really wanted something different and I didn't want anything fussy. I bought it from a store on Park and 26th. They're not there anymore. I have a small one bedroom on Westend and 95th. The couch is low and clean and Italian. I've had it for years and I still really like it."

I think about Brad patiently saving his money and choosing the perfect couch. I picture the day it was delivered. Friends coming over to approve of his efforts. Brad being exacting and careful not to spill.
Brad is man who has patiently compromised. You can see it in his face.

And I also wonder what the meaning of the sofa purchase is (beyond the its purpose for resting). Buying a couch is a seminal life event, in the same world as changing careers, or moving. It's declarative and grown up. You're marking yourself.

I've never bought a couch.

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