Thursday, April 2, 2009

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

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.

16 comments:

Angela said...

I just put a link on my blog to your post. My very first. Wasn't sure how to go about doing it, but hallelujah, it worked.LOL..

This was DEEP and POWERFUL. Like you Coffee, I too have thought, 'would I participate in embryonic cell IF this would give me a cure', even though I believe life starts at conception? Would I be strong enough to NOT take this 'miracle cure' but to stand my ground? Do I have enough faith to NOT walk against what I believe in, just so that I would be 'healed' from some kind of disease?

Tough questions that I have rattled through my mind...Thanks for this very informative post Coffee..greatly appreciated, and something we need to stand in the gap for...

Flea said...

Wow. That's amazing. So when are you signing up? CB, that is so cool! I mean, I know they've tried it with a Parkinson's patient, but there's so much hope contained there! With adult stem cells, no less! Awesome! Our God is good, yes?

Rick said...

I had a very good Uncle that suffered for years with Parkinson's Disease. He died with dignity. Uncle Elton has received his healing - no "embryonic rescue."

Sincerely,

Sister Rick

Gladys said...

I am putting a permanent link on my side crawl.

CB my daddy Trooper Bob has recently been diagnosed with "Tremors of Unkown Origin". We prayed that it wasn't PD and it wasn't. We still aren't sure what it is or what caused it but we watch him like a hawk. Thank you for bringing this to light and putting it on your page.

Elysa said...

Kelly---I'll definitely spread the word at my blog. In fact, I plan on using the whole thing at Graceland today. It'll be my BOYCOTTING APRIL FOOL'S DAY post!

Elysa

P.S. If I win, hold the coffee. I'll have a contest of some sort linked to Dystonia and let you send the coffee to them. I already know about how great Saint's Coffee is and this will spread the word.

Laura ~Peach~ said...

sigh... I have mixed emotions over stem cell research... there are so many things that can now be done / cured/ fixed with stem cells... one thing I would support, NOT that I AGREE with it but it happens and I have no power over it... is when people have abortions if stem cells could be harvested and used to help others then maybe the killing of so many babies would not feel so desolate and the thought of helping someone else might make ME feel as though all the killing is not a total waste... just to clarify... I am NOT for abortions I hate them I have seen what they do to people...anyway its a thought... if Aiden and so many other SMA babies could be CURED with the stem cell research ... anyway feels like I am going in circles... sigh
Love you KJ and love how you make me think

noexcuses said...

CB - That was an AWESOME post! I learned so much from the way you put things, and how you highlighted for the skimmers, etc. I started watching Oprah yesterday so I could learn something more, but I became very disenchanted and felt the whole hour was going to be about Michael.

I am like Peach...I have very mixed feelings. I do believe that life begins at conception, however, I think that what happens afterward, however horrible and heartbreaking is one of those quirky parts of God's master plan.

I pray that there will soon be great advances in the research for your condition.

Coffee Bean said...

Hey Peach and No Excuses!

You might want to go back and read those links I have on the stuff I wrote on my political blog about ESCR. The research has shown that the embryonic stem cells, while they can be manipulated to become any tissue, they cannot be controlled in that they form cancerous tumors. There are also rejection issues. These are things that do not occur with adult stem cells. I am assuming that in the case of children that their own stem cells could also be used.

I'm going to copy below a comment and my response from my political blog.

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.

COMMENT FROM BLBeamer:

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.

MY RESPONSE:

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.

I'm adding here on this thread:

In regard to aborted fetuses and wanting something good to come from them... That is dangerous ground. Essentially, it would be creating a market for aborted fetuses. Also, the research has shown that the real hope is in adult stem cells, not embryonic!

I really want to encourage you to really read through what I have here... read the links. Then, do your own research. The public has NOT been told the truth and I don't know why.

My heart absolutely aches for the families with children that have been told that embryonic stem cells are the answer. They are not.

Coffee Bean said...

Oh No! I made a mistake above and cannot edit it! The paragraph above where I put "COMMENT FROM BLBeamer" also belongs to him.

I guess I should proof read before publishing.

Andy and Wendy Ingram said...

Incredible post today coffee bean! For some reason I thought it was today on Oprah, so did not watch it yesterday. I think it is great how you are taking this head on, even though often times you seem hard on yourself as you accept and move forward with your SD. Absolutely beautiful picture of you and Elysa on her blog!
Wendy

Chris H said...

In short... I don't agree with embryonic Stem Cell harvesting.. life begins at conception and I find it abhorrent to think someone would deliberatly create life to just use 'bits' of a baby. That is all.

Frantic Home Cook said...

Coffee,

My husband suffers from spasmodic dysphonia. He used to fly to John Hopkins to get Botox injections when it was a trial treatment.

hanagrace said...

There's this really cool guy named Dr. Hugh Ross who came to our church, he was talking about Science and how God and science are hand in hand, not opposing each other. He cited the example of stem cells and how the embryonic ones were turning out to be a dead end as far as researching them for a cure. :-) I'm excited that the medical community is starting to see the light. :-)

HEH said...

yeah!! I linked you to my blog... I found you on the dystonia bulletin board and followed your link...

Bogart in P Towne said...

It is an interesting discussion...I just pray that we are not giving false hope to people by convincing them that the only way to cure their disease is by using embrionic stem cells.

The moral ramifications of that are deep.

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