Everyday is a step closer to a cure

Hi,
I just got an email from a concerned client of mine at my tennis club where I coached.He had a luncheon the other day and one of the speakers was Dr.Paul Cox who spoke of his research on ALS and Parkinson's Disease.He made a very interesting presentation about some new findings.To my surprise, his research organization (The Institute for Ethno Medicine) is located here in Jackson where a team of about a dozen researchers coordinate the work of a network of ALS researchers at over 20 universities around the world.I was like "this is great,a research organization in my town".So I will be contacting them and certainly will hope to be their guinea pig.Jackson only has pop of 12000 or so and I think 2 Pals ,me included.I will keep you updated on this for sure.I am excited to have this in my hometown...in the mountains..lol.
Have a good one.
J

glenn gavanaugh said:

I received my second response from Richard Garr. He said that he hopes clinical trials will start by this summer, and that if it all works out well, Neuralstem's treatments will be available to the public within 3-4 years.
But obviously there are other things going on behind the scenes, so there's a lot to be hopeful for.
:smile:

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I'd be interested in knowing the time line for the clinical trials in Taiwan that Neuralstem had mentioned in a press article. Obviously there's no scientific evidence to suggest stem cells are a cure-- but anything that would push the survival average to 18-20 years would be tremendous!

rocmg said:

I'd be interested in knowing the time line for the clinical trials in Taiwan that Neuralstem had mentioned in a press article. Obviously there's no scientific evidence to suggest stem cells are a cure-- but anything that would push the survival average to 18-20 years would be tremendous!

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I totally forgot about the clinical trials in Taiwan. I should have asked the CEO about that. Hopefully those'll start sooner. And pushing the survival average to 20 years would awesome, but helping PALS in the later stages regain a bit of mobility and/or voice would be even better. We'll just have to wait and see. Anyway you look at it, it's inevitable that something good is going to come from all of this research in the next few years. However long it takes to get to the general public, is a different story... but I remain very hopeful for all the PALS on here.

Things you can do now until then

Hello everyone. I received a response from Mr. Garr as well, and he said he could not give an exact timeline as to when their stem cell treatment would be made widely available here in the states or overseas in Taiwan, but I suspect very strongly that if everything goes well, the treatment will be made more quiclky over there. After all, in addition to expanding their marketplace, they will want to get as fast of a return on their investment as possible, which is made possible by extending the trials overseas.

Also, I was talking to a lady with the ALS Association in Washington state, and she said the diaphragm pacing stimulator is already available to PALS through a doctor's order if you meet the necessary criteria.. I didn't know that. I also talked to an ALS specialist in Portland, Oregon--Dr. Goslin--and she said that there is some converging evidence that a high fat, high protein diet with lesser carbs could be beneficial to PALS.

I can only speak for myself here, but if I need a trache and vent before I can receive the stem cell treatment, I will. Who knows, the treatment could restore some limited mobility around and head, face, neck, as well as the breathing muscles! :smile:

Hi Big Mike. Problem is, that statistic is true. Hasn't changed much in 50 years. It will change eventually but will probably take some time yet. If they got the average up to 18-20 years it would be good for the patients, sort of, but would there be the sense of urgency in research that we are seeing now?

AL.

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I have to disagree with you Al. How far back do the statistics go when calculating the average--10, 20, 30 years? Who knows. And the fact remains that these averages don't take into account those individuals who extend their lives on traches and vents. Some of these patients can live much longer. You can't deny that.

Additionally, you don't know what treatments may come down the line in a few years-- you just don't and neither do I. So some of us remain hopeful and aren't just going to give up based on what "average" statistics say.

Respectfully,
Mike

Big Mike said:

I can only speak for myself here, but if I need a trache and vent before I can receive the stem cell treatment, I will. Who knows, the treatment could restore some limited mobility around and head, face, neck, as well as the breathing muscles! :smile:

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do you think that that is the extent of promise for those in the "later stage" of ALS?
(I hope that question doesn't come off sound rude - my tone is completely inquisitive/out of curiousity - as I really don't know much about neural stem cells specifically or what they actually promise...) - do you think that maybe limited mobility can be restored a limb?
-thanks.

Originally posted by Glenn Gavanaugh:

do you think that that is the extent of promise for those in the "later stage" of ALS?
(I hope that question doesn't come off sound rude - my tone is completely inquisitive/out of curiousity - as I really don't know much about neural stem cells specifically or what they actually promise...) - do you think that maybe limited mobility can be restored in other areas for those who have lost mobility in limbs?

-thanks.

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I really don't know Glenn. I don't know to what extent that stem cells could benefit us--at the very least, they could help maintain what we already have for a longer period of time. The tough part is trying to re-establish the neuro-muscular junctions, which would seem more difficult when you are talking about the limbs and the long axons between the motor neurons and muscles. I'm just trying to balance optimism with realism. Apparently, there are those on this forum that think I try to pose too rosy of a scenario with possible survival rates and treatment benefits with this disease, so I guess I have to be careful what I say.

Al said:

Hi Big Mike. Problem is, that statistic is true. Hasn't changed much in 50 years. It will change eventually but will probably take some time yet. If they got the average up to 18-20 years it would be good for the patients, sort of, but would there be the sense of urgency in research that we are seeing now?

AL.

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I never mentioned the survival rates going up to 18-20 years AL either now or in the near future. I couldn't and never would give a numerical figure for that. :?

Mike

OK Bik Mike, you are taking my comments way out of context. Firstly those statistics are the latest from ALS Canada. They may be different in the US but if you want to check with ALSA or a large ALS Clinic I don't think they'll differ much. I used the figure 18-20 years as an example. Nowhere did I say you used it. My point was that if ALS patients lived that long it would not be as urgent to find a cure. Although to someone with it, 18-20 years is not long enough. We all want to live to a ripe old age.

AL.

PS- Those stats do not take into account vented people because so few chose to have it done. We have had over 8500 members here and less than half a dozen have reported vents as long as I've been here.

Al said:

OK Bik Mike, you are taking my comments way out of context. Firstly those statistics are the latest from ALS Canada. They may be different in the US but if you want to check with ALSA or a large ALS Clinic I don't think they'll differ much. I used the figure 18-20 years as an example. Nowhere did I say you used it. My point was that if ALS patients lived that long it would not be as urgent to find a cure. Although to someone with it, 18-20 years is not long enough. We all want to live to a ripe old age.

AL.

PS- Those stats do not take into account vented people because so few chose to have it done. We have had over 8500 members here and less than half a dozen have reported vents as long as I've been here.

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I really don't care what organization said what--I have come across articles suggesting ALS life expectancy is beginning to increase in PALS. I had to log in and sign in to these medical articles so I couldn't access the full articles for specifics.

Just because most people don't go the trache/vent route doesn't mean ALL of us don't want to do that. A lot of people are not well informed about options, and the medical community would just as soon see us roll over and die because it costs too much to take care of us.

let's not get drawn into a defensive argument. There are PALS out there who have lived longer than the statistical databases predicted. But I still think it is probably too early to come out with a new life expectancy figure, therefore I believe the 3-5 year limit probably still stands. This isn't like say, the turn of the 20th century where people didn't know about germs and microbes and could change the way they lived in terms of limiting exposure to disease. ALS is a degenerative disease, and as such I assume things have remained unchanged. Nothing has been developed to change the course of the disease ever since it was discovered, bar rilutek, which has a modest effect. Please God stem cells work to give better quality and solid hope to PALS.

Well, all I know is that I am early in the disease process, and I don't appreciate being thrown into the average statistics without knowing how MY individual course will go. But what I do know is that if I sit around and mope and don't take care of myself, and listen to negative people, the disease may progress faster than it might otherwise. Even my ALS specialist has told me as much, so it isn't just my opinion.

And there are options for extending your life with this disease that you don't have with other life-threatening diseases. The fact is that 80% of those individuals who have lived on long-term tracheostomy ventilation have said that if they were to go back and choose again, they would once again opt for the trache and vent. That number goes up to 90% for those that live at home. Just because most people choose not to have it done, doesn't mean it is a bad choice or that they are right. Plus, you can always have advanced directives made for circumstances that may arise to want you to bail ship.

You have the rest of eternity to be dead. What is everybody's hurry to get there?

I THINK THERE IS A MND OUT THERE THATS NEW AND THEY ARE CALLING IT ALS AND IT ISNT. THOSE ARE THE PEOPLE THAT ARE LIVING LONGER WITHOUT VENTS AND FEEDING TUBES. I HAVE SO CALLED BULBAR ONSET 10 YEARS.I HEARD THATS THE WORSE KIND 6MONTHS TO 3 YEARS.

CONCLUSION: THEY ARE STILL CLUELESS

I'm not feeding the trolls anymore.

AL.

You're learnin Al