Doug Gordon - a request

P

pro9dg

AzB Silver Member
Silver Member
Most AZ posters who know me personally are aware that I suffer from Parkinson’s Disease.
I have had it for almost 20 years and it is a degenerative disease. But I have managed to keep it at bay with the help of drugs but mainly with a positive attitude powards life.
But recently the conditon is deteriorating to a point where I am starting to feel unable to play an active part within the pool community.

I am not seeking sympathy but advice.

I have an opportunity to have an operation that claims to restore 80% of my faculties (and that’s a mighty powerful condition). Good friends have offered to raise the necessary finance to enable me to have the treatment and for this I am enormously grateful.

But before I accept this gesture I want to be certain that the surgery achieves what it claims to do.
The process involves Stem Cells Therapy where the introduction of the cells to the body sets them off on a trail of repairng the damaged part of my brain.

The medical organisation that offers this process is based in California. But because the process has not been endorsed by US Medical Authorities the clinic where this treatment actually happens is in Mexico.

I realise that the proper place for this post is in the NPR section but I would like it initially to remain in the Main Forum. This is because I can get a wider concensus of views, opinions, information and advice from people who have any knowledge on this subject.

Help me to decide

Doug
 
If the quality of your life is deteriorating, Doug, to the point where you cannot get back to an acceptable level of comfort, I would go for it.

The FDA drags its feet on many new innovative procedures, medical devices, pharamceuticals, et cetera.

Have you been able to see the results of any clinical trials, or are you going to be in a clinical trial?

According to The Michael J. Fox Foundation, Stem cell research has the potential to significantly impact the development of disease-modifying treatments for Parkinson's disease, and considerable progress has been made in creating dopamine-producing cells from stem cells. The development of new cell models of Parkinson’s disease is a particularly promising area of stem cell research, as the current lack of progressive, predictive models of Parkinson’s disease remains a major barrier to drug development. Cell models of Parkinson’s disease generated from stem cells could help researchers screen drugs more efficiently than in currently available animal models, and study the underlying biological mechanisms associated with Parkinson’s disease in cells taken from people living with the disease.

However, there are many challenges that need to be overcome before stem cell-based cell replacement therapies for Parkinson’s disease are a reality. Work is still needed to generate robust cells, in both quality and quantity, that can also survive and function appropriately in a host brain. Although ES (and now iPS) cells hold great potential, we do not yet know which stem cell type ultimately holds the greatest promise. Thus, researchers require scientific freedom to pursue research on all types — including ES, adult and IPS cells — in order to yield results for patients.

Source ---> HERE

If it were me, I think I'd go for it, but I would do a lot of research beforehand to find out as much as I can about it.

At the NIH (National Institutes of Health), you can peruse the database of current and past clinical trials ---> HERE

If you decide to check out NIH clinical trials, I live within walking distance of NIH. I'll come visit you daily and bring you goodies to eat. :cool:
 
In my humble opinion (since you asked), it's bunk. There's a reason you can only get it in Mexico, and it isn't because of bureaucracy; drug companies would make a huge fortune off of stem cell therapies for degenerative conditions it if worked. I've read stories of people actually getting sick from having raw stem cells injected into them...threre's research going on now, but I'm not aware of any success. My brother in law has a degenerative vision problem (macular degeneration) and is losing his sight. He was looking into this and the doctor that was offering the stem cell procedure (with offices in Arizona and the procedures done in Mexico by the way) lost his license in the U.S. for a bunch of quack stuff. All of his alleged success stories turned out to be bogus. I would be very careful with anything medical coming out of Mexico...
 
I'd be very careful here Doug. I've read many articals on this stem cell subject and I can't find one written by a legit group that give this kind of treatment the green light. Why has J. Fox not had this treatment if it works? He has the money and the best doctors in the world. Johnnyt
 
Doug,

So far all I have found is the below. If I were you I would take the risk. I know you well and we think alike on a lot of stuff. For me, death is preferable to a low quality of life and I do not know if the risks to this procedure include that. But you and I are old guys and death is not very scary for us. If I were twenty I would wait for the FDA to approve and all that, but you and I will be long gone before that happens.

Here is what I found:

Procedure

According to the University of Minnesota Stem Cell Institute, treatment begins in the lab where stem cells are specialized into dopamine-producing brain cells. The modified stem cells are then transplanted into the brain of a Parkinson's patient. While human trials are still in the beginning stages, the initial results have been encouraging.

The First Human Trial

According to the website LifeNews, the first adult neural stem cell transplantation was a success. In 2004, UCLA researchers injected adult stem cells into the brain of a Parkinson's patient. In 2009, the researchers published the five-year results of the study.

"Of particular note are the striking results the study yielded---for the five years following the procedure the patient's motor scales improved by over 80 percent for at least 36 months."

Additional Research

In 2010, researchers at the Yale University School of Medicine injected human endometrial (uterine) cells into the brains of mice with Parkinson's-like motor-neuron damage. The endometrial stem cells transformed into dopamine-producing brain cells inside the mice. These findings are encouraging, both because of their success and because human endometrial cells are more readily available for research than embryonic stem cells.


Read more: Parkinson's Stem Cell Treatment | eHow http://www.ehow.com/about_6554549_parkinson_s-stem-cell-treatment.html#ixzz2Vuv519k9
 
Jerry Forsyth said:
Doug,

So far all I have found is the below. If I were you I would take the risk. I know you well and we think alike on a lot of stuff. For me, death is preferable to a low quality of life and I do not know if the risks to this procedure include that. But you and I are old guys and death is not very scary for us. If I were twenty I would wait for the FDA to approve and all that, but you and I will be long gone before that happens.

Here is what I found:

Procedure

According to the University of Minnesota Stem Cell Institute, treatment begins in the lab where stem cells are specialized into dopamine-producing brain cells. The modified stem cells are then transplanted into the brain of a Parkinson's patient. While human trials are still in the beginning stages, the initial results have been encouraging.

The First Human Trial

According to the website LifeNews, the first adult neural stem cell transplantation was a success. In 2004, UCLA researchers injected adult stem cells into the brain of a Parkinson's patient. In 2009, the researchers published the five-year results of the study.

"Of particular note are the striking results the study yielded---for the five years following the procedure the patient's motor scales improved by over 80 percent for at least 36 months."

Additional Research

In 2010, researchers at the Yale University School of Medicine injected human endometrial (uterine) cells into the brains of mice with Parkinson's-like motor-neuron damage. The endometrial stem cells transformed into dopamine-producing brain cells inside the mice. These findings are encouraging, both because of their success and because human endometrial cells are more readily available for research than embryonic stem cells.


Read more: Parkinson's Stem Cell Treatment | eHow http://www.ehow.com/about_6554549_parkinson_s-stem-cell-treatment.html#ixzz2Vuv519k9
Click to expand...


Good job Jerry! Doug is a long time friend of mine (and a great friend to Pool) and I wish him nothing but the best. Coming from a family of doctors, like I do, I always recommend getting a second opinion and then a third, FROM AN M.D.! So please Doug talk to people perhaps more qualified than us to answer your questions. Neurologists or whatever specialists treat your specific ailments. Thanks and good luck. Look forward to seeing you again down the road. Jay
 
pro9dg said:
Most AZ posters who know me personally are aware that I suffer from Parkinson’s Disease.
I have had it for almost 20 years and it is a degenerative disease. But I have managed to keep it at bay with the help of drugs but mainly with a positive attitude powards life.
But recently the conditon is deteriorating to a point where I am starting to feel unable to play an active part within the pool community.

I am not seeking sympathy but advice.

I have an opportunity to have an operation that claims to restore 80% of my faculties (and that’s a mighty powerful condition). Good friends have offered to raise the necessary finance to enable me to have the treatment and for this I am enormously grateful.

But before I accept this gesture I want to be certain that the surgery achieves what it claims to do.
The process involves Stem Cells Therapy where the introduction of the cells to the body sets them off on a trail of repairng the damaged part of my brain.

The medical organisation that offers this process is based in California. But because the process has not been endorsed by US Medical Authorities the clinic where this treatment actually happens is in Mexico.

I realise that the proper place for this post is in the NPR section but I would like it initially to remain in the Main Forum. This is because I can get a wider concensus of views, opinions, information and advice from people who have any knowledge on this subject.

Help me to decide

Doug
Click to expand...

Perhaps if you shared more of the specifics about this Californian medical organization, it would be easier to evaluate their claims. Do they have success stories? How many? How many failures? Are these stories verifiable, or might they be fabricated? Can you interview previous patients about their experience?

-Andrew
 
If you're at a point where you have nothing to lose, then go for it. I am suspicious of any treatments offered only in Mexico, though. Why not Germany or some other country with more liberal and individual health oriented treatment philosophies vs protecting drug companies and medical practitioners, like the FDA and AMA does? I had a friend that had a treatment to cure diabetes in Mexico last year that cost him thousands and changed nothing. Mexico has provided quack procedures for a long time, an industry that developed due to the protective practices of the FDA and AMA. If this is offered in Europe, I'd take a look at it.
 
pro9dg said:
Most AZ posters who know me personally are aware that I suffer from Parkinson’s Disease.
I have had it for almost 20 years and it is a degenerative disease. But I have managed to keep it at bay with the help of drugs but mainly with a positive attitude powards life.
But recently the conditon is deteriorating to a point where I am starting to feel unable to play an active part within the pool community.

I am not seeking sympathy but advice.

I have an opportunity to have an operation that claims to restore 80% of my faculties (and that’s a mighty powerful condition). Good friends have offered to raise the necessary finance to enable me to have the treatment and for this I am enormously grateful.

But before I accept this gesture I want to be certain that the surgery achieves what it claims to do.
The process involves Stem Cells Therapy where the introduction of the cells to the body sets them off on a trail of repairng the damaged part of my brain.

The medical organisation that offers this process is based in California. But because the process has not been endorsed by US Medical Authorities the clinic where this treatment actually happens is in Mexico.

I realise that the proper place for this post is in the NPR section but I would like it initially to remain in the Main Forum. This is because I can get a wider concensus of views, opinions, information and advice from people who have any knowledge on this subject.

Help me to decide

Doug
Click to expand...

Doug,
New doesn't mean better...it means unproven. There will always be somebody , in some other country willing to offer you a cure for a big pricetag. The FDA in this country does a tremendous job approving new, safe and beneficial treaments for all manner of human disease.

It's easy to slam the FDA for repressing cures, when in fact the dillegence and rigor they require of experimental medicine spurs along the understanding we have today.

To solicit advice from the AZB peanut gallery (no offense) on how to make a decision is not in your best interest. You need to get advice from those who know your case and are experts in the field. If you need a second or third opinion, then ask for the referrals.
 
Doug-Im not qualified to give an opinion on this but i am pulling hard for you.

I would hope that a couple of our members who are Drs or researchers in this area would speak up. If you decide to go ahead with it, I'd appreciate some info on how i could make a contribution.

Hope to see you again soon- It's been a while.

D Gravy
 
Some real heavy hitters have chimed in on this thread making my desire to be able to remain part of the fabric of the game more understandable. Thank you Jen, Jerry, Lee and Jay you are all respected personal friend. But my thanks to all others who have taken the time to respond.

I am not naive and am sufficiently aware to not go jumping ito things blindfold. There are other solutions which offer similar hope in research facilities in Paris and Cambridge where progress is being made. I was merely evaluating things from a US perspective because of your high standard of medical care there
 
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West Point 1987 said:
In my humble opinion (since you asked), it's bunk. There's a reason you can only get it in Mexico, and it isn't because of bureaucracy; drug companies would make a huge fortune off of stem cell therapies for degenerative conditions it if worked. I've read stories of people actually getting sick from having raw stem cells injected into them...threre's research going on now, but I'm not aware of any success. My brother in law has a degenerative vision problem (macular degeneration) and is losing his sight. He was looking into this and the doctor that was offering the stem cell procedure (with offices in Arizona and the procedures done in Mexico by the way) lost his license in the U.S. for a bunch of quack stuff. All of his alleged success stories turned out to be bogus. I would be very careful with anything medical coming out of Mexico...
Click to expand...

This is not necessarily true. I am an engineer for medical devices. Right now the FDA is on a witch hunt and makes experimentation very difficult to be approved in the US, so many companies are forced to experiment and market devices and drugs OUS (outside US) first. Once safety and efficacy is shown, then companies will market the device/drug in the US.

Please do as much research as you can and make an informed decision. Do not write it off just because it is in Mexico. Good luck and I hope the best. My mother suffered from Parkinson's as well as several of my friends' parents.
 
Doug,

I would go and get several doctor opinions.
Like that voiced by others, try to confirm that this procedure will benefit you.

However, as Jerry said - this is a different decision at 65+ than at 20.

Good luck in whatever you decide.

Wishing you the very best.

Mark Griffin
 
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