Many people out there suffer from a condition that I'd not ever even heard of until a dear friend of mine came down with it a couple of years ago. That's my friend in the photo with me and because of her, I've learned that it affects people in different ways, but for many, it takes away their ability to effectively communicate verbally...even verbally communicate at all.
That means on April Fool's Day, telling jokes or recounting old pranks is no easy manner. And April Fool's Day is just a minor holiday to have your style cramped on. Can you imagine not being able to join in on Christmas Carol sing-alongs or sharing what you're grateful for around the family Thanksgiving table? And of course, the condition just doesn't affect the holidays. No, Spasmodic Dysphonia can make something as simple as trying to place an order at a fast food restaurant or talk to the bank teller an effort in futility. And what about not being able to call your grandma long distance and wish her a happy birthday or make friends when you start attending a new church or move into a new neighborhood? It doesn't just affect a person physically, it hits them hard emotionally.
My friend is trying to get the word out about Spasmodic Dysphonia and I told her I'd join in with her. Here's a blog post that she wrote this week:
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.”
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, go to Coffee Bean's blog and leave her a comment and she will enter you into a drawing for a pound of Saint's Coffee. If you link to her post on your blog, she will enter you into a separate drawing for another pound of Saint's Coffee. Not only could you help her spread the word about Dystonia... you could get a free pound of coffee and feed an African orphan for a month in the process.