Wednesday, April 1, 2009

Oprah, Dr. Oz, and Michael J. Fox... with a Surprise at the End!

**I posted this over at The Righteous Buzz but felt it also belonged over here.

Yesterday Oprah had Michael J. Fox on her show along with Dr. Oz to discuss Parkinsons Disease and Dystonia. Spasmodic Dysphonia, or SD, of which I suffer, is a form of dystonia.

I was actually very nervous about what was going to be said on the show... Last June I posted this video of me talking in an effort to raise awareness about dystonia. In July, I was contacted by a representative from Bachmann Strauss about posting a PSA on my blog regarding dystonia. I did so immediately here. It had not occurred to me until after that that the relation between Parkinsons and dystonia might mean that research could include embryonic stem cell research.

I busied myself and tried not to think about it... until I couldn't any longer. I started doing some research and contacted the Dystonia Medical Research Foundation and asked them if they were involved in embryonic stem cell research or were involved in the fight for federal funding for that type of research. I was assured that they were not.

Because I believe that life begins at conception I am opposed to the use of embryonic stem cells. At the same time, I have a focal form of dystonia that can be hidden simply by my not talking. I can only imagine what it is like for those that have Parkinsons and dystonias that affect their entire bodies. There is and has been great debate over when life begins and I can see where someone who does not believe that life begins at conception would see someone who believes as I do as being an impetus to progress in which they might someday be cured. I do have muscle spasms that occur in my face from time to time, usually when I am greatly stressed, that have caused me to fear that I will develop other dystonias as I age. I've often wondered if there were a cure found through embryonic stem cells if I would change my stance. It has been determined that I am now botox resistant which means I would not have that treatment available to alleviate those types of movements on my face. Where just my voice is concerned, I know that I would not.

This inner conflict has caused me to not use this blog (as I thought I might last summer) as much in the way of bringing others with dystonias on here to share their stories. I was afraid that if Obama was elected that federal funding would become available and that these research foundations would then get involved in ESCR.

It all just made me very uncomfortable.Over on my political blog I did write a bit about stem cell research. If this is something that interests you, here are the links (read in order): Embryonic Stem Cell Research ,Embryonic Stem Cell Research Part 2 , and Frustrated.

The subject of Obama lifting the "ban" on embryonic stem cell research came up. I was very surprised to hear Dr. Oz state that it really didn't matter now. Fox was obviously irritated (or defensive) when Dr. Oz went on to explain the problems with embryonic stem cell therapy. Fox said that we could have found that out sooner had the research been unfettered... with responsibility, of course. How you can have responsible yet unfettered research is beyond me. I don't want to seem like I have a problem with Fox... I understand where he is coming from and can see why he thinks the way he does. However, it is a perpetuation of the perception that President Bush banned that research altogether when the facts are that he allowed federal funding on that research through already existing embryonic stem cells that were slated for destruction, of which there was a lot, and it is through those strains that much of what we now know was learned!

Dr. Oz went on to say that he believed that we were single digit years away from a cure through adult stem cells. Whether that is true or not and whether that will affect me or not remains to be seen. It did give me some hope, more hope than I've had in awhile, for myself.

I found a website called Cell Medicine that is very informative regarding Parkinsons. The Oprah show did little in the way of actual information in regard to Parkinsons and Dystonia. There is only so much you can do in an hour and there was Fox's book to promote. The fact is that no two people are exactly alike and these conditions cover a wide array of symptoms and affect people very differently. I would like to throw a few quotes from the site down here, however, I would really encourage you to click on the link above and really read through it.

However, the actual use of stem cells to regenerate damaged neural tissue is an area of intense interest and research, and experimental studies have been conducted with varying degrees of success, depending on the particular types of stem cells that were employed. In the 1990s, stem cells from fetal tissue were directly implanted in people with PD in an attempt to regenerate their dopamine-producing neurons, and although many of the implanted cells were indeed found to produce dopamine in the brains of the patients, the patients themselves did not exhibit gross improvement. Some of the patients even developed a disabling dyskinesias that could not be relieved by the usual reduction in antiparkinsonian medications. Indeed, fetal and embryonic stem cells have been shown to carry a number of substantial medical risks to the patient, whereas such risks do not exist in the use of adult stem cells.

Since it is the dopamine-producing cells of the brain which degenerate in PD, an appropriate treatment for PD would be one which is capable of regenerating these dopamine-producing cells. In fact, this would constitute the only truly effective treatment of PD.

Adult stem cell therapy does exactly that.

Although adult stem cell therapy as a treatment for PD is not specifically targeted per se as an isolated area of research at many of the finest research laboratories, nevertheless, there have been numerous studies conducted by some of the finest researchers throughout the world, from which very promising results have been obtained. Indeed, the transplantation of adult stem cells directly into the brains of PD patients has already been performed and has already shown marked success.

One such PD patient, who received his own adult stem cells, testified before the U.S. Senate Committee on Science, Technology, and Space on July 14th of 2004, regarding his own progress as a result of this treatment. The headlines from this very newsworthy event read, “Beneficiary of Adult Stem Cell Treatment for Parkinson’s Disease: Safaris and Swimming with Sharks.” The Committee was chaired by Senator Brownback, and the patient who received this novel treatment was Dr. Dennis Turner who had suffered with PD for 14 years. His poor responsiveness to conventional medications made him an ideal candidate for the experimental treatment, which was performed by Dr. Levesque. The procedure itself involved removing a very small tissue sample from Dennis Turner’s brain, from which adult neural stem cells were extracted and cultured into matured dopamine-producing neurons which were then injected back into the left side of his brain, which controls the right side of the body, which was the side that was most severely affected in his particular case. The procedure was performed in 1999. A portion of Dr. Dennis Turner’s testimony before the U.S. Senate Committee is included herein:

“Dr. Levesque did not tell me that this treatment would permanently cure my condition. Science has yet to learn what causes Parkinson’s disease, much less how to remove it. However, since this cell-replacement approach had never been tried in a human patient we hoped for the best. And since my only other realistic alternative was to continue growing worse until I eventually died, I decided to have the surgical procedures in 1999, one to remove the tissue and another to inject the cells. I was awake for both procedures under local anesthesia.”

“Soon after having the cells injected my Parkinson’s symptoms began to improve. My trembling grew less and less, until to all appearances it was gone, only slightly reappearing if I became upset. Dr. Levesque had me tested by a neurologist, who said he wouldn’t have known I had Parkinson’s if he had met me on the street. I was once again able to use my right hand and arm normally, enjoying activities that I had given up hope of ever doing.”

“Since being diagnosed with Parkinson’s disease my condition had slowly, but continuously worsened. I can’t say with certainty what my condition would have become if Dr. Levesque had not used my own adult stem cells to treat me. But I have no doubt that because of this treatment I’ve enjoyed five years of quality life that I feared had passed me by.”

**I highlighted certain points in red for skimmers. :O)

For information on the specifics of Dystonia visit the Dystonia Medical Research Foundation and for more information on Spasmodic Dysphonia go to the National Spasmodic Dysphonia Association.

If you read this far leave me a comment and I will enter you into a drawing for a pound of Saint's Coffee. If you link to this post on your blog, I will enter you into a separate drawing for another pound of Saint's Coffee. Not only could you help me spread the word about Dystonia... you could get a free pound of coffee and feed and orphan for a month in the process.

4 comments:

BLBeamer said...

As a fellow Pacific Northwesterner, I love Michael J. Fox. Nearly every project he is in is enjoyable. Spin City went into the toilet the second he announced he was leaving the show, and not just because the worst possible person to replace Michael was selected.

I rarely watch Oprah and I didn't see this show. I do know how it can be difficult to tell if someone with PD is irritated or defensive or excited or not given the manifestations of PD, so I don't want to assume anything regarding Michael's response.

However, I have heard the meme that "Bush banned stem cell research" so often that it would not surprise me if Fox buys into it, too. What is surprising to me is, rather than be relieved that Bush did not in fact ban stem cell research, everyone I have corrected on that issue gets defensive, angry or argumentative. They seem to have more invested in believing erroneous negative things about G. W. Bush than they do in actually finding a cure.

Why is that? Lord knows that there are plenty of other things to hold against G. W. Bush that he actually did.

Coffee Bean said...

Hey Beamer!

I really don't want to be critical of Michael J. Fox. I enjoyed him as an actor and I found his outlook on life very refreshing and inspiring. I only included his remark about learning the problems with ESCR sooner if it had been "unfettered."

This presumption that President Bush uncaringly blocked research that held promising results for cures through ESCR is a fallacy.

I highlighted the dates in the quotes from the Cell Medicine site because that research took place before Bush even took office. The fact is that he is the only president that ever granted federal funding on any ESCR... it never got that far under Clinton.

What Bush prevented was the federal funding of research done on newly created embryos created solely for the purpose of research. By allowing the research on already existing embryos he was effectively making a compromise that allowed the further exploration into ESCR with embryonic stem cells that were going to be destroyed anyway.

It was an opportunity to conduct more research when, as you can see by the dates on my quotes, it had already been determined through private research that the use of embryonic stem cells is a bad idea... before he even took office!

All that is more for anyone that should happen to read the comments here. I know you already get that.

We are bombarded daily by misinformation that so many just take in as fact. Too many people see the president and our government as BIG DADDY.

Somewhere along the line there has come about this expectation and belief in certain "rights" to being an American that include laying nearly all responsibility... including personal... at the feet of the president and/or the government.

The anger unleashed on President Bush over the speed of the help sent to Katrina victims blew me away. In any other country help would have taken longer... if it came at all.

I also remember hearing Katie Couric on the radio several years back when there was that first peanut butter recall and she said the responsibility for it lay on President Bush. Wow. There is currently a pistachio recall... I haven't heard anyone blaming Obama, have you? If I did I would think it just as ridiculous as I did when I heard Couric blame Bush.

You are right Beamer about there being other things people could focus on that are legitimate critiques of the Bush years. I don't understand the vehemence with which many attack anything and everything about Bush. It is like they have lost all reason where he is concerned.

As far as federal funding for ESCR... as well as American funding of abortions within other countries... where is the money going to come from??? Why aren't people asking these questions when he signs these orders? Why is it even assumed that the U.S. government is obligated to use federal funds to pay for biomedical research? I. just. don't. get. it.

Stem Cell Blog said...

The Wisdom of Oz

Visualize the surreal image of Oprah Winfrey, Michael J Fox and Dr. Mehmet Oz, wearing purple surgical gloves, sitting on stage around a human brain. Dr. Oz explains the absence of Nigro-Striatal Neurons in the brain of Parkinson’s patients while lifting out partially dissected chunks of brain and placing them into Michael’s shaking hand.

The camera zooms in as Dr. Oz steadies Michael’s hand in his. Dr. Oz weaves an intimidating, steel needle between Michael’s gloved and trembling fingers and illustrates the procedure for injecting stem cells into the brain by plunging it both into and through the quivering cerebellum. Michael’s legs spasm and contort and my stomach clenches empathetically with what I sense is Michael’s extreme discomfort, but is really a symptom of his condition.

And yet, NOTHING could have prepared me for what happened next as Dr. Oz, unbelievably and without prelude or warning, makes the stunning statement:
“I think, Oprah, the stem cell debate is dead.”

“The problem with embryonic stem cells is that embryonic stem cells come from embryos, like all of us are made from embryos, and those cells can become any cell in the body, but it’s very hard to control them and so they can become cancer.”

While astonished by his public announcement, I soon began to wonder: “why did Dr Oz only briefly allude to the potential of iPS cells and the proven benefits of adult stem cell treatments?” And then it became clear.

Dr Oz recognizes that the average person on an American street is led to believe, “a stem cell is an embryo is a stem cell”. Due to years of misleading media saturation, as far most Americans know, there are no other stem cells besides embryonic. Walk down the street and ask someone “what is an adult stem cell…what is an iPS cell”, and your inquiries will surely be met by blank stares.

So in retrospect, what Oz DID do, was truly…amazing.

Shunning the history of the love/hate affair Americans have with Embryonic stem cell research and ignoring the majority of US media over the past 5 years, the decrees of President Obama’s funding policies, the positions of the FDA and AMA and the fruitless decade long public pursuit of embryonic cures undertaken by Michael J Fox (with the benevolent and optimistic spirit of Christopher Reeve hovering over him) and before the bewildered eyes of Michael, Oprah and ~7.2 million viewers, Dr Mehmet Oz nailed the coffin shut on ESC treatments:
“I think, Oprah, the stem cell debate is dead.”

With this one simple statement on national TV, Dr Oz has taken the first step towards educating the American public about the current insurmountable limitations of embryonic stem cells and cracked open the door to the American collective mind-set regarding the potential of iPS cells and the reality that Repair stem cells (RSC) have been treating diseases around the world successfully for a decade. Despite the fact that thousands of American doctors refer to RSC as “snake oil,” more and more American patients are realizing that the US medical system is faltering, dated and just not working while the greatest medicine the world has ever seen is available just beyond the borders of their own country.

The seeds planted by Dr Oz will take a long time to find purchase in the collective American mind-set. There is too much embryonic momentum, media and drama, and America loves drama. Embryonic stem cells will not go away and like Romeo and Juliet, this love/hate affair may have to run its course for most, despite Dr Oz stealing the “distilled liquor” and Romeo’s poison and dagger in an attempt to avoid all of the deaths at the end of this play.

To read more about this grim fairy tale: http://repairstemcell.wordpress.com/2009/03/30/a-grim-fairy-tale-americas-doomed-love-affair-with-embryonic-stem-cell-research-intro-the-romance-is-an-illusion/

One step at a time we will climb this mountain and slowly open American eyes to improve their knowledge of treatment options so all can intelligently exercise the freedom of choice in their individual medical care. One inch at a time, Oz wisely created a pathway to an amazing new world of available medical treatments for what were previously believed to be incurable diseases and are in fact treating patients successfully around the world.

Dr Oz took this first step and it was a HUGE first step!

So from where I am sitting, I would like to express my heartfelt and sincerest appreciation for Dr Oz’s bravery, statements and actions. Thank you, Dr. Oz and thank you Oprah; for allowing this sage doctor the forum to break the walls restricting millions of Americans from the knowledge of the medical treatment options they so unquestionably deserve.

To see the original video:

http://repairstemcell.wordpress.com/2009/03/31/oprah-michael-j-fox-dr-mehmet-oz-the-stem-cell-debate-is-over/

——————————————————–

Here is the actual transcript based on my ears and fingers and a lot of patient rewinding:

“I think, Oprah, the stem cell debate is dead.”

“The problem with embryonic stem cells is that embryonic stem cells come from embryos, like all of us are made from embryos, and those cells can become any cell in the body, but it’s very hard to control them and so they can become cancer.”

“I can take a little bit of your skin, take those cells, get them to go back in time so they are like they were when you were first made, and then they will start to make that dopamine & I think those cells, because they won’t be as prone to cancer & because they’re your genes will be the ones that are ultimately used to cure Parkinsons.”

“I think we are single digit years away from making a big impact in the lives of Parkinson’s disease but also diabetics, heart disease, people who have had a lot of problems.”

Chris said...

I like it here! I am also trying to learn as much as I can about what is going on around me in this country. I have been preoccupied with marriage, children and work; and I feel I have taken much for granted. Now is no time to blur it all out, and I am happy to find anyone who is also trying to catch up. I joke that I am a "conservative hippy", so you can imagine that I have some conflicting perspectives; but I think that is true of many of us. I don't feel obligated to a party, just my country, my family; sadly so much of the information out there seems to be presented by people who know little of - or care little for, their country.

I respect that while you make your own beliefs known, there is no judgment or ridicule in your response to those that may oppose them.

I came across Dr.Cooray while conducting my own little study, then I found your blog. Icing on the cake! Thanks:)