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BarryG

Extremely helpful member
Joined
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Diagnosis
02/2008
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Alberta
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Hinton
So let's say that one day you went to the bank and discovered that someone had been taking money out of your account without your knowledge or permission. What would you do? Would you keep putting money into the account to stay ahead of the thief? No, you would try to find out why and how the money was being stolen and that would be your only concern.

This seems to me to be the situation with ALS and stem cell therapy. We are spending lots of effort in trying to find out ways to replace dead neuron cells (putting money into the account) and not enough in finding out what causes the disease in the first place (finding the thief). What if the amount of cells that we are able to create through stem cell therapy can't keep up with the amount that are lost to the disease? If so, is it a stalling tactic, a postponement of the effects of the disease? OK, then we can't call it a cure but a treatment.

I am not arguing against stem cell therapy, I am just saying that we need to be clear about what we are getting. If it turns out to be like insulin injections for diabetics or antiretroviral drugs for HIV, fine, let's go for it but don't lose sight of the real picture. Finding the cause and a cure for ALS.

I am always reminded about how if you find cancer early the chances of being cured are better. If you find ALS early your chances don't improve, you just have more time to get used to the idea.
 
A lot of truth spoken there Barry. How do we know they are not looking ? We only here the news when they are trying something new - looking for investors .

If they find something to slow it the hell down , until they find that cure , I want that too.

Ya , Im greedy , I want it all , I want to live.

Glen
 
Yes, they should be researching it on all fronts... all hands on deck!

Stem cells, prevention, cause, everything! I want it all too!
 
one more for that "everything" option!
 
Nothing surprises me anymore where this disease is concerned. I think they want to sweep it under the rug......Geez sure is a lumpy rug........lol
netty
 
I like the idea of putting some focus on what causes motor neurons to die. What good would it do to add more neurons if they, too, are destined to die?

There must be some sort of common denominator shared by people experiencing motor neuron disease.

Zaphoon
 
In terms of possible common denominators, I've read/heard about folk who have experienced extreme emotional/physical stress; arm forces personnel, physicians, psychologists/counselors/social workers, frequent airline passengers... Anyone else come across this info.?
 
There must be some sort of common denominator shared by people experiencing motor neuron disease.

Kim, there's a thread on PLM about a bill coming up in Congress to fund more $$$ for the National US Registry ... $150M ... with links to send letters to senators urging passage. Also a link to sign-up in advance for the registry. If the registry questionnaire is really, really, REALLY thorough, we should start getting answers within months. I hope it's not going to be a name and address only sort of thing, but will ask about toxic exposures, illnesses, etc., etc.

It sounds like, if the funding passes, they will start collecting data by fall. With only 35K or 50K PALS in the US, they should really be able to zero in on commonalities and connections.

Kim, on your other question, adding stem cells that are destined to die: that would at least be a treatment, and replenishing dying cells with living ones might keep a patient alive for a looooong time in a stable condition, no?
 
Barry, love your analagy....quote..We are spending lots of effort in trying to find out ways to replace dead neuron cells (putting money into the account) and not enough in finding out what causes the disease in the first place (finding the thief).

I am sure most people can quote other research which is going on to find answers from all angles, its just that it does not make headline news...the mnd assoc in uk are funding lots of research. My own neuro, Andrea Malaspina has just started a research program, one of many, in which he is trying to find a test for MND/ALS. This would replace the...eliminate everything else...situation we are all in. I am participating in his study, which is only to give blood every 3 months, my husband is also giving, as a control. Martin Turner from Oxford is running a similar research project along side this, but using spinal fluid. My neuro also has a drug at mouse stage. There is a lot of research out there, it just does not make the headlines that stem cell does.
I agree with you comment about replacing neurons that will die anyway, which is why, having been approved for stem cell therapy in germany (why would they not approve me, its my money they want!). I will not be going..YET
 
Stem Cells again........

I know I'm aby-normal and will be the first to admit I do not understand the idea behind stem cell treatment. From what I have read and seen on the TV each stem cell is programed to become something, such as a part of a kidney, bladder, hair, whatever.
If this is true, how do you inject a few million stem cells, and expect them to become new nerve cells when there is nothing in the cell that tells them to be nerve cells?
This is the part that research is trying to figure out now, but so far have not come up with an answer. You can bet when they do it will be the headlines on all news stories, MDA, and ALS groups.
I'm not being argumentative, just do not understand the logic.
 
I know I'm aby-normal and will be the first to admit I do not understand the idea behind stem cell treatment. From what I have read and seen on the TV each stem cell is programed to become something, such as a part of a kidney, bladder, hair, whatever.
If this is true, how do you inject a few million stem cells, and expect them to become new nerve cells when there is nothing in the cell that tells them to be nerve cells?
This is the part that research is trying to figure out now, but so far have not come up with an answer. You can bet when they do it will be the headlines on all news stories, MDA, and ALS groups.
I'm not being argumentative, just do not understand the logic.

i usually keep my mouth shut here, but here goes.

the other problem is stopping the stem-cells from just growing all over the place. even if they can grow into nerve cells, what is to stop them from becoming a tumor? I am probably in the minority here for feelings about stem-cell research but I think it is all bunk. I think it is just a huge money-scheme pitted on political climates. Sure in theory making cells to replace old cells should work. But also, in theory, we should be able to make nano-robots to go in there and just fix the cells =/

Stem cells aren't a magic potion. they are not just some taboo substance that can cure everything. That is just the image the government has portrayed to garner votes. No one has even scratched the surface of the miracle of life and the ability for stem cells to go from a colony of several hundred cells into that of a human being.

you are 100% right - they have not figured out WHY the nerve cells are dying. Once that is discovered, I think a cure wouldn't be far off.

Alternatively, the cure may be found like many other cures - chance. Penicillin - complete chance discovery. Viagra was even a failed bloodpressure drug with a "side effect"
 
Beth,

You make a good point regarding neuron replacement as treatment if the patient is going to benefit (even though they - the neurons - are destined to die off).

Zaphoon
 
Senegal, interesting thought. I have wanted to ask here on the forum how many have faced extreme emotional or physical stess. I have in my life and wonder if it has anything to do with anything. So if anyone wants to answer, please do.
NancyS
 
Give me the stem-cells. Test it on me. I fully understand what is going to happen to me in the future and I understand that the future may be a very small amount of time. But one thing I know. The end will come. So, while i am here, test anything on me. If I can't help myself with any of it, so be it. But if I can help the next generation coming up to this then let me help. If I get tumors, then we will know. Besides, aren't tumors treatable. More so than what we have now. Even if it kills me. If someone learns something, then use me. I am sick of hearing about all the petrie dishes and mice and all the other tests they are doing that may be ready to help someone in the next 10 to 20 years. Let me help someone now.
Sorry about the rant
NancyS
 
I guess if there becomes a way to create new motor neuron cells in a sufficient quantity to more than replace the dying ones then that would be a treatment that we all could live (Really) with. Hell, I would even be happy to stay in the condition that I am in now! Another analogy; If your boat is sinking and you cant find or fix the leak then you better have a bailing bucket.

I know that there are researchers out there who are looking for a diagnostic test, cause and cure for ALS but like others have said they don't get any publicity. Even before the doctors gave me my diagnosis I was involved with a research study which was trying to find a test for ALS.

As far as stress is concerned I know that I dont do well if I am stressed out. I have less energy and lose weight, whether or not stress had anything to do with me getting this disease who knows?
 
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