Patients Medical

Patients Medical
Originally uploaded by Charlie Roberts

JOHN or "CLIPPED WINGS"

Hey John, I don't want to post anything that would be irrelevant.
So I'm sending this to you because you're so read up on everything.
I am slowly making my way there.


http://www.npr.org/templates/story/story.php?storyId=120316010


I realize not a cure, but away to rebuild after the cure?
I am reading Eric is Winning. Gets me pretty nervous.
I'm looking into having fillings removed. I have four.
My dentist said she could do it one sitting.

I am trying to eat perfectly but am losing weight.
I think its hard to keep weight on with out cheese or bread.


Charlie


_____________________________






Hi Charlie,


Actually, this study is not irrelevant for people who are rebuilding after a successful stem cell procedure.


By fillings, I assume that you mean mercury amalgam. Yes, get them out. I found a lot of information concerning mercury fillings on YouTube last night. Nasty stuff.


Early in ALS, there is almost nothing you can do to prevent some weight loss. The objective is to keep it slow. You should stabilize at some point, and this will be your ALS weight. Over three years, I've dropped from 170 to 127!


Regards,


John

__________________________

Sister writes.

I agree that you should have your fillings removed, just concerned that it be done in a way that minimizes your exposure to mercury, so make sure that your dentist knows that this is necessary. I say this because my dentist also said no problem to removing a mercury filling, took no precautions, I swallowed a lot of junk and breathed in vapors, very sick the next day.


We are going to the Cape tomorrow, will be back on Monday.

Will put the hair analysis test in the mail to you. It apparently requires a significant amount of hair. If you have questions on how to do the test call Barry. He's not in on Sunday or Monday as you already know.

Are you going to use any of Cyndy's ideas?


xo *;-) Sister

Is A Cure For ALS Around the Corner?

Is A Cure For ALS Around the Corner?

November 11, 2009 - 1:25 PM | by: Reena Ninan

When New York Yankee Hall of Famer Lou Gehrig died from ALS (Amyotrophic Lateral Sclerosis also known as Lou Gehrig's disease) in 1941 there was no cure. Sixty-eight years later there is still no cure. The disease affects nerve cells in the brain and spinal cord, eventually paralyzing the body.

BrainStorm Cell Therapeutics Inc, a public U.S.-Israeli company that develops adult stem cell therapeutic products, may be on the verge of a significant breakthrough in ALS treatment. Fox's Middle East Correspondent Reena Ninan sat down with the company's chief scientist Prof. Daniel Offen, here are excerpts from the interview:

NINAN: What's the ALS breakthrough you're working on?

OFFEN: In our previous studies we have shown that our newly developed bone marrow derived stem cells can protect neurons in tissue cultures and in animal models. Recently, we found, in several experiments, that these unique cell populations can rescue motor neurons which are the cells that degenerate in ALS, as well.

NINAN: What makes you optimistic this will work with ALS patients?

OFFEN: Instead of using embryonic stem cells, which have ethical and safety issues, we take adult stem cells, differentiate them and transplant them into the patient. Our focus is to change the environment of the cells at the site of damage in the body. We also use cells taken from the actual patient with the disease, which greatly reduces the chance of rejection. We know of no other company that is doing this. We are extremely optimistic about our approach and its chances of success in helping ALS patients.

NINAN: If this research proves affective how will this change how we treat ALS patients?

OFFEN: We believe that within a year, if not sooner, our cell-based approach will be proven to be safe. Then, after controlled studies and FDA approval, ALS patients, both in early and late stages of the disease, will be able to enjoy alleviation of the symptoms and have the benefit of a better quality of life.

NINAN: Why has finding a cure for ALS been so difficult?

OFFEN: Because the exact cause of the disease is not known. Today there is no effective drug that is able to slow down the progression of the disease. Our new approach bypasses our lack of understanding and utilizes the patient's own cells to secrete high doses of natural protective factors to the cells affected by the disease.

NINAN: You've also had success with neurodegenerative diseases like Parkinson's disease and Huntington disease. What's new there?

OFFEN: In studies we have shown that neurodegenerative diseases share the same damage pattern. Therefore, a specific therapeutic agent can potentially ameliorate the symptoms of several distinct neurodegenerative diseases. We used our unique stem cells in animal models of Parkinson's disease and Multiple Sclerosis and found that indeed, the transplanted cells rescue the degenerated neurons. Brainstorm plans to continue to study how our stem cell technology and methodology can be further utilized in the treatment of other neurodegenerative diseases.

STARVING IN SOHO

I bike to SOHO.

I carry my (sky blue) fleece coat (with a periwinkle zipper) into the Patagonia store on Wooster Street. The zipper is broken.  The pretty counter girl and the soft, malleable manager, assist me carefully - me with my cane (made from an apple-tree branch) - me with my modest low energy.
(My gentle composure feels like an act - I'm not soft spoken and patient, I'm a jaded -I want it now! New York type. (I won't go into a store with a line. I just walk to the next one.  The confusion of a store like Macy's makes me mad).

"Would you like to sit down and rest your legs, sir?"

"Thank you, yes,"  I whisper. I'm so dear and fragile.

The kind store manager retreats to the back room to fix the zipper.
I sit on a bench by the display window. I am an old man, over-taxed from just getting to the store.
My normal mode would be to case the joint -paw my way through all the merchandise, try on six or seven things and buy nothing. Today, I sit on the bench and stare into space. I check my iphone.

There is beautiful outdoorsy youth here. Kids in their twenties who get high from the right parka for their weekend tenting in upstate New York. This is something I aspired to. This was next on my list.
I don't dare think past my present situation to what is denied me. Luckily, my mind stops to what is available to me right now. Perhaps this containment is physiologically programmed in each one of us. The sense of loss would decimate.

When the store manager returns, he tells me (more than once) to come back anytime and exchange it for a new coat.

"But the coat you have now is actually made better than the newer ones... you might want to hang onto it."

He tells me they'll donate my blue (azure?) coat to charity or recycle the polyester fleece.  They're not in business to make money, they're here to keep people warm.

Back to my bike, I'm feeling vulnerable. The getting (on and off) of my bike is more precarious (for now).  I will get better. I need to relax, focus, slow down.  Like the tightrope walker in "MAN ON WIRE" (I saw it last night on my laptop) straddling my bike requires great slow precision, which I enjoy.

I'm starving in SOHO and I consider (giving in) and eating at Ben's Pizza. But I've committed to no wheat or dairy.

Voices (in my head) offer conflicting directives.

"Eat whatever you can, whenever you can!"

"You must detoxify, eat only the purest foods and liquids!"

Yet another voice suggests riding around the block. Investigate.
I follow this suggestion and lock my bike up near a quiet, drab restaurant on the corner of Sixth and Prince. I can't make out the sign, but the plain facade speaks healthy honest food.

I cross the street with some trouble and discover that the
it's organic macrobiotic.

Souern (www.souen.net)

Inside, the bland atmosphere matches the wholesome cuisine.
(I imagine Gwyneth Paltrow slumming here).

I have a platter of steamed vegetables (nicely seasoned) with brown rice, and while I eat, I read "Eric is Winning". This book is inspirational.  It gives me ideas. I'm grateful he wrote it.

(I discover the whey isolate protein I've been ingesting daily, is a source of MSG.
MSG releases glutamate to the brain and short circuits it.
I've been eating whey isolate protein to retain body mass, and because (I read) it's a cheap way to produce more glutathione (the main antioxidant) of the body). Argh!

At Church. An excellent meeting. All of the speakers are so articulate!!

(There is no disease. There is only belief in disease).

cane

cane
Originally uploaded by Charlie Roberts

GOOD LUCK

I take the elevator up with a ghostly elfin woman, white faced and white hair (like a fright wig).
She's short and plump in a purple sweater - relaxed and accepting about her peculiar appearance.

"Do you think you can make it?" she asks holding the elevator door.

"Sure,  I think I can make it." (Am I that bad?)

The doors close, a moment of silence and then,

"It's a good life unless you weaken."

"I'm sorry."

"Ever heard that expression? It's a good life unless you weaken?"

An automatic smile, "No, I haven't."

"Yep, it's a good life unless you weaken."

She smiles contently (looking no where in particular) as if THIS is her very favorite epigram and through my disability has fondly rediscovered it.  She is being folksy and warm here,  but the more she repeats it, the more it feels like a rebuke.

"It's a good life unless you weaken."

"Well, I've certainly weakened." I say because what else is there to say.

I get off the elevator first and as the doors shut I hear,

"Good luck!"

I'm not sure what luck has to do with it.
I hear this sentiment often. It feels wrong (to me) to bring up the idea of luck when talking about someone's health. Luck is for lottery tickets. Your health is your g-d given rite.

"I'll pray for you," feels dramatic and makes me lonely, but at least it suggests an action to bring about change.

I like what Jackie (my 72 year old next door neighbor) says,

"Charlie, you're going to be fine!! I know it!! I'm never wrong about these things!!  I can feel it in my very bones!!

I'M PRETTY

Jackie (my 72 year old neighbor) lies on my elegant oriental rug on the ninth floor of my towering apartment building (hanging over the west side highway) and helps me tear up ancient tax returns.
Still, I tuck (some things) away in notebooks and boxes, as if (in the future) by studying these yellowed pay stubs, I'll have incite to who I am, and what has happened to me.

Earlier, I biked to a park near Charles Street.

I read spiritual books and a book about my NIKON camera (the menu display is so frustrating, I'd return it if I could).

I started the book on Medicare! Jackie lent me her's. I said to Jackie, "Look! There are only old people on the cover, I'm skipping decades of my life!" Jackie pointed out an attractive hispanic girl surrounded by all the senior citizens (her grandparents?) and said, "Charlie, look! She's young and attractive! Look how pretty she is!"

I'm pretty. (A shout out to Norman).

I also read "Eric is Winning" which offers a dicey plan for ending your ALS. I find the book so overstimulating, it induces such anxiety, I can only read a chapter a day and I have to read it outside of the apartment.

Sitting in that park, I think about plans of action.

Christian Science (of course) has major success with illness.
Maybe I need to follow the protocol, Eric suggests.

(I may need to combine the two, although Mary Baker Eddy advises against this).

This daily haul of eating plain, un-toxic food, (the preparing and cleaning!) the endless vitamins and added protein and fats. The mindful exercise where you never feel a sweat or your heart race. This is all becoming tiresome.

I thought about what that nutritionalist in Connecticut told me. He said, (when asked), these extreme measures are to thwart the illness, or slow it down. Once this has happened, you can relax.
(But what does this nutritionalist know?)

Tonight, I do laundry, scrub the bathroom and kitchen floors.

Jackie, lies on my rug and after tearing up my tax receipts, she helps me organize my possessions.
She puts things back where they belong. She pulls my laundry out of the dryer.

To repay her kindness, I write emails for her.  She dictates and I tap, tap, tap away.
Most of her emails are to the library and her daughter.

Later we play "name that tune" using the Pandora website on my laptop.
We both enjoy this.

Here are some of Jackie's favorite singers. (I can't remember the ones I didn't recognize).

Joe Williams

Dinah Washington

Nancy Wilson

Betty Hutton

Tony Bennett

and

Barry Manilow.

Going to bed in clean sheets is a relief.
I've finished Christopher Isherwood's "A Single Man" - (the previews for Tom Ford's film version barely resemble what I imagined for the novel).

Charles and the West-side Highway

Charles and the Hudson River
Originally uploaded by Charlie Roberts

Charles Street

DSC_6759
Originally uploaded by Charlie Roberts

EAST SIDE

Central Park

San Remo
Originally uploaded by Charlie Roberts

Central Park

Central Park
Originally uploaded by Charlie Roberts

Dr. Wang

Dr. Wang can see me right away.

I'm in his tired examining room sitting across from his desk.

He offers a quick hello and studies my files like an actor going over his lines before a big scene.

He asks me how I am doing, what I am doing, and if I've improved.

I tell him, I (now) eat organically, I swim daily (or every other day).
I take lots of vitamins and antioxidants.

I attempt to explain the website (Patients Like Me) to him.

"And do other people with your disease see acupuncturists?" he asks.

"Some do, but others have given it up because they see no positive results."

"How does this website make money?"

"I'm not sure."

Dr. Wang is concerned with money. Not in a capitalist Donald Trump way, but in a whole-body integrated, health, kind of way.

"No money... not enough money? Feel bad, bad for the body, bad for the nervous system."

And here Dr. Wang makes a sour expression to illustrate his point as if I was the one having a hard time understanding english.

Dr. Wang then proceeds with his treatment, a treatment that I have come to know and anticipate.

He talks and then he LISTENS (with great concern) as if I were his son.
He thinks hard.  He takes on the burden of figuring out what is best for my disease.
And this is a relief. He seems to be saying, "relax Charlie, I'll figure a way out of this."

This is the opposite, the VERY opposite response I get from western doctors. Western doctors arrive pokerfaced. Nothing you say, can penetrate their cool, removed equilibrium.
You've got a few minutes. There are a thousand more important things at hand. Time is money.

Dr. Wang's stern lecture is a good one. It's just what I needed to hear (again).

"You must go to bed at the exact same time every night... because of this disease. You must eat regularly... because of this disease.  You must not get upset or think too hard or get too sad ... because of this disease.  Drink fresh water, exercise lightly. Go to parties, be happy, but you must go home early and sleep... because of this disease."

He tells me that I should not spend my time researching the disease or conversing with other who have the disease. I should leave that to (one or two) special doctors. Check in from time to time to see if there is anything new that will help, and if there isn't, go home and forget about it.

I won't embrace this view.

I tell Dr. Wang there really are no doctors for this disease. It's rare. There is no cure. There is nothing but alternative methods (so far). There is research, but no proven medicine. So I have no choice but to read, to research, to help myself.

Dr. Wang seems concerned .... "how many people have this disease?"

"I think (and I'm not sure, I can't bear to read statistics about this disease)  "I think there are roughly five thousand new cases a year. It's pretty rare."

"Okay Charlie," Dr. Wang says, "I'm just telling you what I would do. I would relax, feel good, and leave the rest to the doctors."

"Well, I just may have to, because it's all so expensive!
I think diet is important. I want to be tested for food allergies but testing is so expensive."

(Last week I left PATIENTS MEDICAL in a controlled rage because they don't take medicare.
(I recently switched to Medicare from SAG. It looks like, I can't afford to see them anymore).

Dr. Wang tells me,  "this disease has nothing to do with diet. This disease they can't explain. This disease there are no answers. The best thing to do with this disease is to take care of nervous system and immune system."

"Now Charlie, (getting back to my paperwork) have you improved since the last time I saw you?"

"No, I would have to say I've declined. It's a slow decline." (I put my hand in front of my face and make my hand slant downward to illustrate the idea of decline).

Dr. Wang nods.
He understands but then he seems to take this decline personally, like his protocol, which always works, has sprung a leak.

His anxious concern is a joy to me. It's a relief.

"Let me see you walk."

I show him my groping, loping, walk.
Dr. Wang gets right down to business and puts his hands all over my legs and butt, like a tailor in a mad hurry.

"Your legs are cold. Feel. Do you feel that?"

"Yes, I know its part of the issue. We all have cold legs."

"This is no good. Your legs are not getting nourishment. The blood is not getting down there and this is no good. You must use a heating pad and keep your legs warm at night. And when you lie in bed in the morning, you must do these exercises."

(He shows me some exercises that vaguely resemble bicycling in the air).

He insists that I eat the royal jelly. I tell him (the last time I tried it) I had a hard time swallowing it.

"Mix it in orange juice. Not soup, not coke, just juice."
He stares at me to make sure I'll follow his directions.

"Okay, I'll do it." (Everything will be okay. Dr. Wang is so resolute, I can let go).

Dr. Wang brings up Florida. "Didn't you say you had family in Florida?"

I tell him I could go to Florida but I think I'd wilt there. New York (in a way) keeps me brave.

Then Dr. Wang says with quiet intensity,

"You very strong person Charlie, and this is GOOD!"

I nod this away. I negate it.

"No! I think this is true.  You very strong person." - (Like he's breaking with code and letting me in on a secret).

"I think you should write a book. I do! I think people will be interested. You bike, you cook, you swim, you work (and he gets this wrong, I don't work, can't work) you meet with different doctors. This is good. It's very good. You very strong person. I think so."

And I feel a well of pride gush from within like someone told me, I got the part.

Dr. Wang and I do the needles, and as always, I fall into a deep sleep.

Before I leave, he gives me a brush to spank my legs, to bring the blood flow to my feet and lower calves. I'm to use the brush in the shower.

"I'll see you next week, Charlie," he says like an order rather than a suggestion.

And I feel like I've really impressed Dr. Wang with my strong character and fortitude.
Not wanting to disillusion the doctor,  I remain solemn and stone-faced as I leave his office.