Research News Update from Steve

"Intrathecal Cyclosporin is one of the new protocols being developed for the treatment of ALS that I referred to in our last newsletter. While only in Phase 2 (dosage/efficacy), having succeeded in Phase 1 (safety), the intrathecal usage of Cyclosporin is, in my opinion, one of the leading opportunities to have come to the forefront in the past several years. Whereas Cyclosporin has been considered for ALS since the early 1980's and was trialed by Dr Stanley Appel in 1988 as an oral medication, it is only since its use as an intrathecally-delivered medication (injected into the spinal cord) that its promise seems more relevant. I intend to meet with Maas Biolab in December at their facility in Albuquerque to gain more information, having first become interested in their approach to Cyclosporin A through intrathecal injection (Mitogard) when meeting with them at the MNDA Symposium in Toronto in November 2007."

We hope you find this information useful and that you visit ALS WORLDWIDE frequently.

Barb and Steve Byer
September 7, 2

SATURDAY AND SUNDAY

Saturday, my sister comes over and helps me clear out my apartment.
I send her away with lamps and lampshades, a tennis racket, cds, an electric piano, a tent and sleeping bag, a used bike. We gather a mound of paperwork (I've saved receipts and tax returns for the last 20 years). We build a pile by the couch.  I am to slowly go through it and throw most of it away.

Sunday,  JD takes me to IKEA.

We drive through the Holland Tunnel to a desolate land of off ramps, factories the size of small communities, a cold treeless world and then we're at IKEA.

IKEA chills me to the core.

He pushes me around in a wheelchair.  As I'm rolled around I disappear. I am invisible.

The human need to create a quick homey world. No one has time to gather things to create a home but you can buy the look of a home for very little money if you will spend the day staggering in this windowless convoy with more merchandise than is (right or good) and it's everywhere.

Everything I saw I thought, "I could use that" but I don't dare stop and look at it or even consider buying it because IKEA never ends.

When we got to the check out line with my little sheet (I thought I lost it), I asked JD if he wanted to bag it.

"Wanna just get out of here, pretend we never came here today?"

And I kind of thought JD would quietly say and with some small shame,

"yeah, lets get out of here. I can't stay here another minute."

But he didn't.  JD is a competitor, he enjoys fighting for parking places, he got good grades in engineering school. We are not two peas in a pod. So JD perseveres. He gets us through check out.

I buy a tiny dining table, three sets of shelves, matching storage boxes, and a gimmicky red IKEA wall clock. I almost abandoned the clock at checkout but JD insisted I get it. (It was cheap and you feel like you have to buy things, you've spent the day there).

And we drive through endless broken parking lots with acres of plastic parking barriers to the pick up the loot. JD loads the back of the car and I concentrate on not letting the desolation, the existential angst of spending the day shopping for cheap plastic furniture, get to me. I think I was actually a little shaky.

________________________

My friend CAR left a message on my cell phone objecting to my thoughts on IKEA.
My friend Olivia left this email.

Just wanted to let you know that I USED to feel that way about Ikea. I still hate going there but now that I've started to master the catalogue I have started to appreciate it. It's not a defeat. It's not the same way of decorating as collecting antiques through the years but it still counts towards making your living situation better and cozier.

Me

Gabriel's Office

photo.jpg
Originally uploaded by Charlie Roberts

SIMPLE

I am stepping over kitty litter, errant lettuce leaves, mounds of dirty laundry mixed in with clean laundry (never properly) put away. The walls of my apartment are blackened in places from where I reach out to steady myself.  I can't find shoes. It's like the elements of my apartment, the sofa, the piles of newspapers, the discarded pants and tee shirts, are tugging at me as I pass them and I take the position that there is nothing I can do for you (all of you inanimate objects pulling on my emotions) - you'll just have to live in your state of confusion and neglect because if I attended to YOUR needs, I will destroy what energy I have for the day, whatever hope and imagination I have stored up. No, you will have to wait until my cleaning person arrives. And you maybe carted away permanently because I can't take care of you anymore.

This morning, I don't bother to shower or shave. There isn't time. It's supposed to rain today but I get on my electric bike anyway to meet Gabriel, my cranial sacral therapist.  I am in that state where I haven't prepared for the day. So I throw anything I might need in my bag, in my coat pockets, my pants pockets: the Glutathione spray bottle and literature, a water bottle, both sets of keys for my electric bike, my journal, some fish oil, a flash light, the New York Times, a pear (in the same pocket with the keys).

Gabriel calls me during my mad rush and leaves a message (I don't get to my phone in time). I play the message on the elevator ride down and Gabriel says, "Charlie did you just call me? I think you just called me. Are you okay?"

Maybe Gabriel is a telepathic mind reader. I didn't call him, but I did think really hard about him and his schedule and mentioned to him (in my mind) that I might be late.

I bike with ease to 15 West 30th. I can't find Gabriel's office. I call him in the cute confusion of Broadway and 30th.

"I'm at 115 West 30th near 6th Avenue." - (not 15)

Getting around requires me having face to face exchanges with people any New Yorker would normally  ignore. To get off my bike, I need to lean on the side of a truck. When the driver comes around and sees me moving in protracted slow motion, holding onto the truck, he's alarmed. He thinks he hit me.

I smile, my old man smile, "no, no, I'm just trying to get off my bike, hope you don't mind me using your truck."

When I enter the building, the lobby guy (who hasn't seen my come in) looks up, runs over to keep an elevator door open and says, "hurry up! I can't keep this door open forever!

I slide like a slug onto the wall of the lobby and begin my impaired walk toward the elevator.

"Let it go, this is the best I can do.

"Oh sorry man, I had no idea."

This all feels familiar but also temporary. My brain continues to communicate to me that I'm in better shape than the lobby guy. The drama of my immobility, the simple knowledge that this is the best I can do, keeps me safe and protected from the wolves of fear, the wolves of the unraveling understanding of what my future might be.

As I enter Gabriel's studio on the twelfth floor, (his studio is on a floor with small offices of architects, scenic designers, and start up web companies,  the  open doors of the offices reveal spare and open white spaces with big industrial windows. The people in the offices are quiet, tapping at computers, spending their days in (what seems like) stress- free, creative solitude.

I knock on Gabriel's door. He opens it. I step in and fall at his feet. Like a building being imploded, someone has placed 150 pounds of gun powder in my core and detonated it just as Gabriel opens the door. It is a slow unraveling. (Or) Like I'm a solider who has traveled hundreds of miles to deliver an important message, and just as I reach the General, I fall at his feet from dehydration or consumption. The look in my eye (I imagine) must contain the same alarm and surprise that I see in Gabriel's eyes. Our expressions mirror each other.

I apologize to Gabriel and his female colleague. She doesn't look up. Gabriel lifts me back up by the elbows and I am standing once again.

Cranial Sacral therapy is both physically and emotionally therapeutic. This session gets deep. We contact  a deeper part of me. We ask this deeper part of me for guidance. This deeper part speaks and instructs.

This deeper part is not something I want to talk about on an open blog. But, it was helpful. I think there are many things out there that are helpful, if your open to them and if you are in the right place to receive them.

"Receive." That is a word that comes up over and over again (for me).

Unlocking my bike to travel to my next appointment, a fellow biker is unlocking his bike from the same post (one of those bike locking posts recently installed by Bloomberg).

He is dark skinned and open and easy and nice.

"Hey, how does that work? (referring to my bike battery) Is there a magnet or a motor? Is it working on the back wheel? I can't see how it works?"

My defensive instinct is to make up an answer, but instead, I say,

"I don't know."

"I don't know how it works. I had to get it. Because my legs aren't working right now. I can't really bike up hill. I HAD to buy it.  I used to bike around on an old Schwinn. But now I need the battery to help me get around. So I don't really know. I haven't thought about it."

My frankness disarms him.

"Well, no matter what, it's still a good bike, that's a really nice bike. You're legs will mend and will get better and then after that, you'll still have this very cool bike.

(I laugh) "You think? Let's hope so."

 - ( later I remember reading about what it is to be a good Christian Scientist. To be a good Christian Scientist you must watch your thinking. You must deflect error (evil). Instead of laughing at the possibility of my legs getting better, I might have heartily agreed, known this was true."

I notice that the biker has a modern kind-of basket on the front of his bike. The basket has a sign attached to it. The sign says "Simple" or  "Simple things" or "Simplicity".  He must work for one of the start up companies in the building I was just in.

I get my bike together and leave my fellow biker.  And as I walk away, I think about our conversation and decide I want another look at him. I turn around and he has vanished. It's only been about a minute and I search in both directions of West 30th Street. He is just plain gone.

LOFT WILLIAMSBURG

THE WILLIAMSBURG BRIDGE

WYETH

Jann and Suzy
Originally uploaded by Charlie Roberts
Those are Wyeth prints hanging in my childhood living room.
I found them sad.

COOL BEANS

I didn't want to go to Brooklyn. I didn't think I'd make it.

I emailed Taliah... "I'll be there (maybe)".

But I believe in putting one foot in front of the other.

Ignore the fear until it's unavoidable. See how you feel when you get there!

(This credo has led me to auditions I wasn't prepared for, to apartment buildings, where I would wait to go inside to a party or gathering, repressing my fear 'til the last minute, and then the fear would triumph, and I'd shuffle home another sad, lonely human on the planet).

The day I was to meet Taliah,  I was worried about biking over the Williamsburg Bridge.

When I lived in Brooklyn (years ago), the Brooklyn Bridge was a mess of signs and stairs and off ramps. But when I arrive at the entrance to the Williamsburg Bridge (at Delancey Street) it's like the entrance to Oz.

It's so easy to get on the bridge, and the bridge is so scenic and accommodating!

New York is quaint and unpolluted!

When did New York become so damn easy and user-friendly?

I really feel cheated because when I was in my twenties I suffered a daily run through the Meat Packing District where there were still homeless people gathered round burning ash cans. These (new) New Yorkers have no idea.

The Williamsburg bridge is great. It has pink rails and happy, healthy people who look like they're from Seattle. This bridge is ideal.

Taliah's artist's loft is right over the bridge.

I take a right down Broadway.  As  I unseat myself from my bike, Talliah calls out...

"Charlie!"

She's been waiting for me (outside).  That was nice of her. She knows I may need help. I sent her a link to this blog.

I'm glad to see her.  I have a giddy, emotional disposition (these days) like I've just recovered from a state of shock from some great war... and look at me now! I'm alive! I made it and so did you!
It's a sad, warm affirmation that we're together in the present (right now) but OH! That moment just slipped away. (hug, hug)

Taliah is warm and earthy and shy and young.

She wears a zipper down sweatshirt with "B R O OK L Y N" embroidered across the front,

like she was costumed for a TV program.  (When I met her a second time, she was wearing the same BROOKLYN sweatshirt).

She guides me to a freight elevator on the other side of the large old brick building.

I debate whether to bring my bike up to her loft or lock it up outside,  but Talliah lifts the bike up the stoop and puts on the freight elevator and we are intimate and chatty and on our way.

We enter an immense loft lousy with art and couches, paintings, painting supplies and is oh so cozy and bohemian and real and not real. It's an ideal location for a cool indi film. It has the warmth and intricacy of Santa's Workshop. That's right, if Santa was a Brooklyn dude, this would be "Brooklyn Santa's Workshop".

We make our way to her part of the loft and through my (living space envy) I breathlessly an talk about lost real estate opportunities. We trade New York Real Estate stories.

I tell her I used to own a tiny box of an apartment in Chelsea.

I had thought it would never grow in value.

Talliah is unphased by this, to my confession. She gave up a three story brownstone for $1500 a month (the entire brownstone).

Yep! the city has really changed.

I love this loft (just for the the visuals) and would like to wander all over it with my camera snapping pictures, but I don't.

I don't because it would be rude and greedy, and also because it's not why I'm here.

I'm here to discuss her art, not to hungrily create my own. So after getting permission to take a few photos, I stop and focus.

"I saw your paintings hanging in Flat Iron District a couple of years ago, in a restaurant or was it an art supply store?  Normally, being an actor, never knowing when my next check will come ... I'd never indulge in commissioning a painting like this...

but I want beautiful things around me... and not to be morbid, but if I die, I'd like to leave some things behind that are beautiful and that might remind people of me. The Schwinn is a connection to me because it really rescued me."

"Oh, that's really great."

"I mean I think I'll be fine, I plan on being fine, I just .... you know."

"sure".

We talk details.

Taliah tells me she gets commissions, but she also paints for friends. Sometimes she paints just to paint. She paints on canvas, paper, and board or canvas stretched over board.

I ask which one she likes best and she says she likes all of them but right now it's paper because it's easier to store.

I ask her if its hard to just stick to bikes. (Taliah only paints bicycles).

"Do you ever veer from the path? I feel like I've always had a hard time with focus, (as a creative type)."

"Not really, I love bikes. I was living in Cobble hill in the early 90s and just happened to buy a really great little bike and I started biking everywhere and I've always biked since.  I've met some great people through the biking world. I just love how a bike can bring you places, you can see things that you wouldn't see on the subway or on foot. It's been really cool, really good."

"I agree, it's a great invention. It turns the city into a small, little town (for me)."

We turn to her latest work.

Her current model (posing center stage on a table in the center of her studio) is a gorgeous, vintage, British, racing bike. The tire rims are wood! The paint (mustard yellow) has been worn to a thin, exquisite, painterly layer that reminds me of the painterliness of any of the great Impressionists. The handle bars are expertly bent (from years of use). They're tired, but still look masterful and strong, like this bike was designed for greatness, to last for centuries. This bike may exceed the beauty of any painting Talliah paints of it.

Realizing the beauty of this bike, I think of my own less aesthetically inspired bike, an orange Schwinn from the sixties, gaffers tape holding the seat together.

I tell Taliah,  "I don't want a sad painting. My bike is tired but I don't want it to be like...  say ... a Wyeth. I'm not sure which Wyeth, but you know those paintings that look like sad black and white photographs? I grew up with those, I never cared for those... the peeling New England doors, the hanging dead ducks, the dirty hunting dogs... super beautiful, super real... super depressing."

"No, I see bikes as a positive thing. Bikes are energy.  Friends often offer to bring me decapitated bikes, ruined bikes, abandoned bikes from the street. They think that would be cool, that I would like to paint these derelict bikes, but I have no interest in that."

(My bike is such a sad little beater... I wonder how she'll get around it).

I need water, my tongue feels like I'm going to swallow it.

"Flat or bubble?"

"Flat"

She brings me a glass of water with ice cubes.

It's time for me to go.

On our way down I ask about the building.

"It's from the 19th century and was used to make things for the Civil War. When I moved in (years ago) there were sweat shops on the other floors and people would knock on my door looking for work."

" I used to rehearse children's theatre in the Garment district. The building we rehearsed in also had sweat shops. The elevators were packed with nervous immigrants.  Now Anderson Cooper lives there."

We make our way onto the street.

She helps me down to the curb and I start to cramp up but it goes away.

"Thank you Taliah, I'll call you in the next few days and we'll make plans" and Taliah says,

 "cool beans".

New Zealand

Thank you for your posting and your theories. I'm taking an army of vitamins, eating organic, juicing! And I swim every other day.

Saturday night I went to friend's house for dinner. He lives in, and just redid, an apartment on the fourth floor of a 19th century townhouse.

I climbed the stairs using my arms, my lazy legs following.

Two days later I feel like I broke my left arm (or) that someone threw a punch (as hard as they could) into my shoulder.  I'm afraid to use it.

Hmm...

______________________________

I'd love to be able to swim - just my breathing not quite up to it and I'm always scared of breathing in water and choking. Thats weird about your arms, maybe you've strained something? I know I sometimes get numbness in my hands and arms, but not pain?

Hoping to get back on the exercycle shortly. I'm totally shattered after the long flights, but should recover inthe next few days.

cheers,

mark

______________________________________

Thank you for emailing me back.

It's a lifeline to me.

I still am in the beginning and don't want to confront this.

I am perversely independent.

(not to scare you - I wont' show up out of the blue) but New Zealand has always been a fantasy vacation for me.

I asked my Chinese accupuncurist about traveling to China and he told me if you want to see a beautiful country...  go to New Zealand. So it seems (to me) you're living in an ideal land.


-Charlie

my beater

my beater
Originally uploaded by Charlie Roberts
Taliah is going to paint my old Schwin

October 13th 2009

I do my vata oil massage before my bath.
I juice. Vitamins and eat.

I sit down at my desk for several hours and open mail.

I order a pillow-top mattress from Land's End.
My legs and hips have thinned out. It's difficult and painful to turn in bed.
I love my mattress. I require a very firm mattress and it took me years to find this one, the right one.
Now, this mattress isn't working for me.

I get out my bike.
The wind is so strong behind my building on West 41st that I'm frozen in the street. I straddle the bike, stuck (the battery can't defeat the wind). Traffic is coming. I can't move.  I scan the street. I call for help from a near by deliveryman.

"Hey!"

"HEY!!!!!!!!!!!!!!!!!!!"

The delivery-man ignores me or thinks I'm nuts.  I manage to turn the bike around and use the wind to propel me towards midtown.  I'll go to the Cup Cake.

At the Cup Cake, Andy (my barista of ten years) brings my green tea to my table because I'm too unsteady to carry it myself.  He looks nervous and shy about my present condition but doesn't ask any questions.

Andy is my age. He has a rock band. It's Andy and three younger women.

Andy has curly hair and a kind folksy disposition like maybe he grew up around hippies in the South.
Andy is anchored in ways that I'm not.  I feel like a shallow, money grabbing, suburbanite (around Andy).

He gave up a cheap floor through apartment in Chelsea to move to Brooklyn because he can't stand the way Chelsea has changed.  "Too many people shopping, you don't recognize anyone anymore."

(This floored me).

He loves his new Brooklyn apartment and doesn't mind the commute.

Andy has no cell phone or health insurance. Andy doesn't have cable TV.

Last year, he married his longtime girlfriend but they didn't make a big  deal about it. I think they did it for legal reasons (taxes or something?).  But I saw him the day after he got married and he looked different, calmer, handsomer.  Like he saw something he wasn't prepared for and was pleasantly surprised.  I was jealous.

I pay for my tea. He always charges me less. I then always tip what he saves me. This is our ritual.

"Ahhh...  thanks Charlie." As if he never expected it.

I sit with my tea at the front table that is just one large white marble slab. I read pamphlets about the Vata Oil I massage into my skin every night (Ayurveda), the glutathione spray, and my (top of the line) juicer.  I like this juicer, something I should have acquired years ago.

And... I pull sheets from various catalogs for looks that I might like for the apartment.
(This new look may never happen).

Before going home, I stop at LONGO Brothers Liqours at 36th and 9th and buy red wine. I like that place. I choose the Chillean Cabernet "DUO".  I hate it.  Don't buy it.  (I'm sipping it now).

At home, I put away my delivery from Urban Organics.
And I e-mail Taliah Lambert, the artist is going to do a portrait of my bike!
She will come by tomorrow and ride my old Schwinn back to her Brooklyn loft.

__________________________________

Taliah!

I checked out the bike. The tires are a bit soft, but ridable.
There's a pump in the bike room and we can fill the tires before you go.

I really have a love for this bike.
It's served me well in the city.

It's a good bike too. Better made than newer Schwinns (I think).

There is one thing. The seat is a bit frankenstein-y.
It fell apart years ago and I taped it up with black gaffers tape.
Maybe I should cheat and but a new seat for the bike's sitting.
I don't want my bike to look ghetto-ish (I guess).
We can talk about it when you get here tomorrow.

Charlie (Yay)

STEM CELL

Unfettered by regulation, India pulls ahead on stem cell treatments

A controversial New Delhi clinic deploys advanced therapies that are unavailable in the U.S. to cure Americans suffering from MS, diabetes, paralysis, Alzheimer's, Lyme disease and cerebral palsy.

By Mridu Khullar

Published: October 9, 2009 15:35 ET

^-A⁺A

NEW DELHI, India — In December 2007, Californian Amy Scher got on a plane to India, wheeled herself into the Nu Tech Mediworld hospital in New Delhi, and started the first phase of an experimental embryonic stem-cell treatment.
 
Her American doctor had warned her against this untested procedure. But 27-year-old Scher was making no progress with conventional medicine, and she was fed up with the constant visits to hospital emergency rooms.
 
Scher suffered from chronic Lyme disease, which had gone undiagnosed initially, causing serious damage her nervous system. After researching her options for months, talking to several people who had benefitted from these treatments in India, and reading up about therapies available stateside, Scher decided the American medical system couldn't help her. She chose to travel to India.
 
For eight weeks, she was injected with stem cells and underwent extensive physical therapy. The treatments cost an average of $20,000 to $30,000 for a first round of injections. They were not covered by insurance.
 
Today, Scher's U.S. physician, Dr. Steven Harris considers her "asymptomatic." He is uncertain whether the disease has been eradicated, or if it’s just dormant, but he says the treatments appear to have helped.
 
From India, Scher brought back a SPECT scan, which measures blood flow in the brain. Before India, Harris says, the blood flow in her brain was impaired. "At the end of her stay, a repeat scan showed normalization of her blood flow — in effect, an improvement in brain function." Scher no longer takes nerve stabilizers or cardiac medication. The chronic pain, a constant companion since 2001, is gone.
 
Unknown risks 
 
But some scientists and stem cell researchers in the West believe that patients like Scher are putting themselves at a huge risk by coming to India to get these experimental treatments. The problem, they say, is the lack of legislation governing the use of stem cells in the developing world.
 
The Indian Council of Medical Research (ICMR) allows the use of embryonic stem cells if the condition or disorder is considered incurable. But Dr. Satish Totey, Chief Scientific Officer at Stempeutics, a private stem cell company, and the Secretary of the Stem Cell Research Forum of India (SCRFI) believes there needs to be tighter regulation.
 
"There is nothing in those ICMR guidelines that can actually be called a guideline," he says.
 
Unlike in the West, there has never been a controversy about the manipulation or destruction of human embryos in India, giving the country’s doctors a head start in the field.
 
The growth of private hospitals providing stem cell therapies, however, is breeding a rift of a different kind. Given that most of these treatments have not been proven safe or effective, medical professionals dispute whether these clinics should be allowed to exist at all.
 
A controversial doc
 
At the heart of the controversy is Dr. Geeta Shroff, the doctor who treated Scher.
 
Being both fiercely independent and intelligent has earned Dr. Shroff the criticism and scorn of many. A pioneer in many ways, she developed a technology through which, by the use of a single donated embryo, she has been able to treat 600 patients for conditions such as Alzheimer's, multiple sclerosis, renal failure, cerebral palsy, and diabetes. What's also unique about Dr. Shroff's technique is that's she's been able to grow embryonic stem cells without the use of any animal products.
 
Dr. Shroff converts the stem cells into a clear substance that can be injected into her patients. The treatments include four to eight weeks of injections with intense physical therapy. In a progressive disorder, such as multiple sclerosis, the aim is to first stabilize the patient, in order to stop further deterioration, and then eventually, to start rebuilding through the use of stem cells.
 
The greater the damage to the body, the longer it takes for the stem cells to start regeneration. In a static injury, such as a stroke or a spinal cord injury, the stem cells have to bypass the thick scar tissue and form connections around it. Patients who come seeking a "miracle cure," are often disappointed, she says. The stem cells need time to regenerate the body, and often take months or years depending on the injury.
 
Dr. Shroff started out as an infertility specialist. That, and her practice as a gynecologist, helped fund her early work, which was carried out in her garage. It also gave her insight into embryonic stem cells.
 
In the nine years that she's been treating patients using this technology, she says that not one has reported any side effects. For GlobalPost Passport, several of her patients were happy to lay out their medical reports, wiggle their toes where they once had no feeling, and share details of their stay in the hospital — including complaints about the food. The scientific community, however, remains unconvinced.
 
In what is probably her most controversial move, instead of publishing her findings, Dr. Shroff decided to patent her technology. (Her patent application is available online.)
 
Totey says Shroff is taking advantage of her patients’ desperation. "Under the pretext of patents, she says that nothing can be shown," he says. "Why does she not publish a paper?" He believes that by not doing so, she is putting her patients at a risk of getting a teratoma — a type of tumor “that may contain several different types of tissue and sometimes mature elements such as hair, muscle, and bone,” as defined by medterms.net. (Teratomas are a common challenge for embryonic stem cell researchers.)
 
Initially, Dr. Shroff explains that she did think about publishing her results. "You do try and get out there and at the end of the day, I am a doctor," she says. She tried to present at some conferences, but was rejected and told that there were already too many people presenting on embryonic stem cells. That's when she decided to patent her work instead. "With the patent, I could protect the technology. I could make sure that somebody who doesn't understand the business can't stop it." Once the patent is granted, Dr. Shroff will be able to move forward with the next step.
 
The dream, she says, is to make stem cell injections available in pharmacies across the world, so that the process of stabilization and treatment can be started right at the onset of disease. She likens it to the discovery of penicillin. "That was the beginning of the antibiotic era, and it changed the entire face of infection around the world. This is similar to that."
 
Favorable outcomes
 
Of her 600 patients, 30 percent are either doctors or have physicians in the family, she says. Despite her critics' claims, Dr. Shroff says she has always put the well being of her patients first. An ethics committee at her hospital evaluates every case that comes in. The first two years, she says, were spent exclusively in the lab, testing repeatedly to make sure the treatments were safe.
 
In time, she's sure the controversy will die out, as laws will come into effect. "It's important to have certain guidelines or laws, but they shouldn't curb research," she says. "The law has to be such that the work does not stop."
 
But Dr. Totey rejects proceeding with treatments before the science has been published and vetted. He points out that no one knows what she is putting into those injections. "If it is intravenous, I can use river water and inject that," he says. Until she shows the scientific community what she is putting in there, he says he'll remain unconvinced.
 
Some doctors argue that the U.S. puts up too many barriers, and that India's regulations are appropriate in allowing stem cell treatments for incurable and terminally ill patients. One such physician is Dr. Laurance Johnston, who in 2007 was the first American scientist to visit the Nu Tech Mediworld clinic.
 
Dr. Johnston’s credentials make him well-placed to judge: he is the director of the Spinal Cord Research and Education Foundations, Paralyzed Veterans of America (PVA); and he was formerly director at the Division of Scientific Review at the U.S. National Institute of Child Health and Human Development, a division of the National Institutes of Health (NIH). He told GlobalPost Passport that he's convinced she's sincere and conscientious in her endeavors.
 
"As you probably expect, there are a lot of politics, agendas, and economic interests when it comes to various emerging stem-cell programs," he says. "In general scientists think they are being good scientists if they point out what is wrong with a program rather than its potential."
 
Dr. Harris, Scher's physician, is also impressed. After advising his patient not to go, and being pleasantly surprised on her return, he decided to travel to India himself to see Dr. Shroff's work. "She has been able to accomplished two feats quite advanced in the field of stem cells," he says. "The ability to freeze and thaw her cells to allow storage and transport and the creation of an immortal cell line without animal feeder cells." Harris was most impressed with Shroff’s success treating patients with spinal cord injuries, and children with cerebral palsy.
 
According to a report by the SCRFI, India’s stem cell industry — including mainly research, but also stem cell therapies deployed by Shroff, and other stem cell therapies — is expected to grow at a rate of 15 percent, to $540 million by 2010.
 
"I think India is at the forefront of emerging stem-cell treatments in many ways," says Dr. Johnston. "Convinced of their superiority, American scientists hate the notion that the hottest breakthroughs may be happening in other parts of the world and vociferously denigrate them."
 
Dr. Totey agrees that it would be a mistake to base India's stem cell guidelines on those of the U.S. "The way we work is different," he says. "We should look at our own system and make our own guidelines. There is no point in looking at the U.S. and thinking that they're the best."
 
Scher, who spent years going in and out of U.S. hospitals, shares this sentiment. "I had really tried," she says. "I had tried all the traditional things, but I had also tried alternative therapies. And then, when you don't have any of that left, you have to be open-minded. It's ignorance to not look anywhere else. You can't think that the U.S. has the only good treatments in the world.
 
 
Editor's note: this article was originally published on GlobalPost's premium content section, Passport. For more articles like this, please join Passport. 
 
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JD at home.

Condo
Originally uploaded by Charlie Roberts

CAUGHT ON

In the afternoon, JD comes over.

I called him because I have to redo my apartment.

It needs to work in a more integrated way. Right now, it's clumsily put together and confusing.

I can't find anything.

JD drives over after his (afternoon yoga class) in the west village. We pour through Ikea, Room and Board, and Crate & Barrel catalogues.

JD is a builder and just finished converting a (never touched) 19th century townhouse into three apartments. He took the top floor for himself and has spent the last year collecting new furniture, staring at paint chips, buying - installing (and then returning) fixtures, until he finds the fixtures that look just right.

His condo is about as nice as it gets.

It has a yoga room, fireplaces in the bathrooms, a new garden deck off the master bedroom (the wall facing this garden is all glass and has a theatrical curtain to pull across it, at night.   JD kept most of the original details. But on the parlor floor, there were original frescos painted directly on the walls over all the fireplaces. JD painted over them.

JD is fifteen years older than me and we're quite different. But, we're both romantics and we both like to make things. We're nerdishly fastidious about our projects.

JD is a bit of a hetero-nerd who at one time was soap opera handsome. He was on a lot of soap operas.
Maybe he was kind of a mean straight dude, but after years of therapy, and now couple therapy, he's in touch with himself, and opens up easily. (But) he can fall back to being a tough talking, (slick and/or sleazy) - real estate guy when it suits him - (I mean... who isn't in New York - it's a deal with the devil just to dwell here).

A month ago, an angry tenant - a tenant he went to court with - (a tenant he got rid of) - sent him a kit in the mail for increasing the size of his d*ck). JD (to his credit) genuinely found this hilarious.

JD is randy, always watching the women who cross his his path as he drives through the city.

He has this game. The game is this.

If he's stopped at a red-light, he must choose one of the pedestrians on the crosswalk to have sex (with*).

* I hate ending a sentence with a preposition but sometimes  can't figure a way (out).

Even, if there are only men, even if there are only old, handicapped hunched over men, he must choose which of the old hunched over men.  I guess this keeps him sane it the manic Manhattan traffic. He encourages others (in the car) to join in.

This juvenile game leave me tongue tied for reasons I won't go into here.

JD keeps himself in great form. He surfs every weekend and teaches yoga during the week. He gets his haircut often and it often looks good. At age 61 he just got a retainer to fix his bite.

JD is kind. He is self conscious. He can't read out loud without stumbling over the words.

JD is a good listener and hands out advice. Often this advice goes on forever.

(Sometimes) JD over does the helping thing, insisting I take his arm even when I don't want to.

It bugs me. Having to act out the role of the invalid. I feel like I'm putting on a show. I've never had tolerance for other people's physical weakness.

As we finish up my improvement list, JD insists I come over TONIGHT to see the improvements he has made on HIS startling gorgeous condominium.

The spotless wood floors, 19th century encasement windows, six panel wood doors with copper doorknobs, the very LATEST and best modern kitchen, make his home look like the kind of rooms you see as backdrops in Pottery Barn catalogues.

Susan picks me up and we drive through the Lincoln tunnel to Jersey City.

I climb the stairs as Susan and JD watch or (smoke).  My arms propel and my legs are lazy followers.

It can be done! ... the three flights of stairs. It just takes about 15 minutes to climb it.
(The next day I realize that I over did it. My left arm feels broken).

JD makes the natural mistake of flattering me for my progress. "You're doing amazing Charlie! I'm impressed!"-  (Like I'm getting better instead of worse). This is the same mistake my doorman make.

Earlier in the evening my doorman Spiro offers "Glad to see you walking sir, working it out.  Don't you worry, as long as you keep working on it , you'll be better in no time!"

This (of course) is not the case. I don't bother to explain why to Spiro,  but carry on my own withering conversation in the confines of my head.

Now on the third floor, I drink good wine (a Cabernet, Shiraz and Malbec mix) and watch Ross's newest commercial. (Ross is JD's wife and looks like the actress Catherine Ross of "Stepford Wives" and "Butch Cassidy and the Sundance Kid"

It's an Osteoporosis commercial. It was shot in New Zealand. The  New Zealand mountains in the background- (they are camping in the commercial) - are glorious. And Ross is so good in it!
We watch it three of four times.

JD has a new big flat screen TV with hidden speakers through out the two floor condominium so that watching TV feels very important.

We have shrimp and pasta and salad for dinner. Mattie brought an organic wine.

The food is excellent. I skip the gluten pasta.

Being in JD's ritzy apartment is rubbing off on everyone. We're all feeling a bit successful.
I toast JD for creating this incredible home.

"This apartment is magnificent, as great as creating any play, independent film, as great as creating any first rate performance.... Congratulations JD!"

JD blushes.

(When I like something, I can really pull out the stops).

Whenever I speak during our dinner, the table stops to listen, like I'm channeling wisdom from another galaxy. d

"I think it's great that you live in all this physical perfection. When I was young(er) I thought it was kind of cool to live in a sort of ugly squalor or chipped furniture and found paintings. Because when you're young, you live with all this untapped energy and there is your own physical beauty and of those of your friends that surround you - so, you really don't need or crave clean pretty surroundings.

But when you get older, like your energy, you lose your beauty and you need to compensate and have the beauty and order around you.  And I think like viewing a painting, there is a metaphysical dialog going on between you and your surroundings. One needs to pay attention to this relationship and take care that the conversation is good, that your surrounding are making up for your lost energy and beauty. So really...  design is just as important as a healthy diet,  exercise and a positive outlook."

(I said something like that, only through the wine, I said it better).

"Hmm.. that's cool. I like that" nods Mattie.

JD says, "I'm glad you said that because I've been having doubts if all of this was worth it, if I really needed this... but you've given me something to think about."

I am a dying guru.

It's time to go. I climb down the stairs. Susan drives me home back through the Lincoln Tunnel.

We stop in the front driveway of my building and sit like teenagers not ready to go in (just yet).

Susan hates her life (right now). She teaches school and is getting her doctorate at the same time. I try to convince her that it's not the right choice, to be miserable. But I ramble and can't get my thoughts across.

Somehow, I find myself at this question.

"Do you think Christ rose from the dead?"

"No Charlie, it's just a big metaphor! The whole thing is just a big metaphor. Christ was probably some really great hippy with a lot of talent and insight and it caught on."

"Yeah, but it's got to be more than that, it can't be that simple, things don't just "catch on" and then stay caught on for two thousand years!" My brow is furrowed and my mouth is open and I'm making an upside down smile. I rebel against this tiny view of the world.

"I just think we're all living in this very limited consciousness and no-one is willing to believe in anything outside the scope of their own boxed-in reality and I think it ruins your life. Your success, your happiness? ... is based on some (agreed upon) - some (made-up)  reality, where you're either winning or losing!"

(and why should I agree to this reality? Why should I hang around or live with people of limited vision? It certainly won't make my life, my present situation, any better).

Susan is driving to Vermont in the morning.  She needs to get going.
I get myself out of the car and weave to the lobby door. It's always a gamble.

She waits until I'm inside, like a concerned parent, and drives back into the dark city.

I stand frozen at the lobby entrance. It's just me and the doorman, Spriro.

Spiro looks up from the big marble reception desk and sees me pinned to the entrance.

"You wanna hand, sir?"

"No... I'm good... I'm fine."

(pause)

"You wanna use the luggage cart to get across the lobby."

(pause)

"Um.... sure, thank you.  Sure! I'd like that, thanks Spiro."

Spiro brings me the cart over to me and I use it to steady myself, to roll myself safely across the vast, shiny lobby.

I take the elevator home to the 9th floor, discarding the rolling cart as I go.

When I get home, I write this blog entry.