My mom is in India for treatment

[CindyM]

I think the majority agree with Al. I know I support him to the fullest. We have seen unscrupulous posters try to make money from PALS, since, at this stage of the game, almost anybody would do anything if they thought it would prolong his or her life.

I am not arguing with anybody who has the money and is willing to spend it on an untested and unproven treatment. I'd probably turn myself into a guinea pig too, if I had the funds. But this site will not be a forum for quacks pretending to be scientists or doctors but are in reality scammers trying to seperate our pals from their money. Al is very clear about that.

One last piece of my mind: (what is left of it, that is :smile we don't tend to argue with folks who are determined to try this for themselves, except to advise them their money might be better spent making memories with their loved ones. So do us a favor and don't argue that we should let others encourage PALS to try these untested treatments.

This site is about support. Sometimes the best support requires telling the truth, no matter how unpopular that truth may be. Cindy

 

[Sammantha]

Al, the protector

I feel Al is letting this person know that we are not gullible....... Sometimes you have to do that in a way that may come off as rude, but it works... My grandmother whom i love and adore, is a self proclaimed psychic. She follows all these new health things, metaphysical things and what not. She is always sending me vitamins, nickel water?, health books, she even wants me to make this weird electrical machine? I love her and thank her for the stuff......... None of it works! I let her keep sending them because this is her way of helping and trying to make me better after all she is in her seventies and is as healthy as a horse. One time she got on this kabuki mushroom tea kick and thought making at home would bring her in millions. She had buckets of these weird mushrooms all over her house..... God love her, anyways last year she took me to her friend who is highly intelligent?! He whips out a binder and has me hold my arm out and asks me questions for the next two hours. If my arm has resistance to a question than this means the question was true or something. Then i had to tell my subconscious to release it.... He closes his binder after all this and asks me how i feel, and i say my arm is tired. I feel no different, nice to have met you. Then the man had the nerve to say, well maybe my subconcious feels the need for me to be sick and that i am really not sick at all...... I wanted to cry but then i wanted to deck him and call him out. Out of respect for my grandmother i said we need to leave! I then told my grandmother do not ever do that again, and then i said what does that man do for a living, she said he is an electrician..... He was creepy and had a girlfriend who was a half wit that believed he was the next Edgar Cayce..... Because i did not buy into his binder of questions he felt threatened enough to question my validity. This is why i do not believe in alternative medecine. I have done the health, excersize and low stress lifestyle and nothing is haulting the progression and i sure as heck dont think going to a third world country is going to make me better.... Maybe a little more greatful for what i do have perhaps!

 

[Sammantha]

Ohhhhhhhh, after reading all the posts i just had to open my big mouth...... I am so tired of companies moving to India so that Americans can buy the service and the companys can make a crazy profit by taking advantage of the countries people. So American money is going out and nothing is coming back into the economy, dont even get me started on the economy....... Secondly doesn't India have the world's largest population? So mathematically it would make sense that they would produce a higher number of doctor's and such. I dont look at a country and judge it by how many intelligent people it produces i look at it and judge it by the way it treats its own people and land.........................Did you know that Americans are hiring surrogate woman from India, because they can pay them less? Not only are there surrogates here but there are millions of orphans right here in our country, and not only do people want to go all the way over there to procreate they want to do it as cheaply as possible. Countries that care about there people and land should stop supporting other countries that are not doing the same. And i am NOT saying that all these people are bad, i am saying we as Americans should not take advantage of there poor state! And it is is not just India that we do that with, China, Taiwan etc etc......

 

[Blizna]

Here is my oppinion from person of Europe and a person who was in India just as a tourist:

Their culture is much, much more rich and deeper than yours (american), that is old only a few centuries. They are not so rich of course, there is a lot of poverty outside the big cities, but those cities are modern and full of new, growing companies with large investment potentials.

Do you know why they COULD have really succesful threatment? Because there are no ***** who ban research due to stupid religion or false etique...they simply can afford experiment with much more stuff than western scientists, thats why many experiments are done just there.

With Chinese, their wisdom of healing is the oldest and even today we dont know why actually acupuncture works..but with many problems it really helps.

I dont say they really have cure for ALS, I dont think so.. But they can be much further in research because nobody is telling him "hey, this is against god". Fortunately, their religion is much more older and tolerant then "young" stuff with jesus..

No offence to anyone, just told you what is generally known but its not spoken about in western world..

 

[freddiesnetty]

Dear Blizna,
I can respect that and I do feel that here in our country that this disease is swept under the rug, I would never be the first to judge any one of the beliefs or culture, I was just saying that Al does not want the Pals nor Cals to be sucked dry, when so many of us have to depend on what little we do get from our countries funding. I was just not in the mood for the whole Al bashing. I don't even know if it was bashing....but I have been through hell and back the past week and I think we all are very fond and grateful to OUR Al.
netty

 

[Icanmanz]

Dear Blizna,
I can respect that and I do feel that here in our country that this disease is swept under the rug, I would never be the first to judge any one of the beliefs or culture, I was just saying that Al does not want the Pals nor Cals to be sucked dry, when so many of us have to depend on what little we do get from our countries funding. I was just not in the mood for the whole Al bashing. I don't even know if it was bashing....but I have been through hell and back the past week and I think we all are very fond and grateful to OUR Al.
netty

Hi netty, this is not a reply, only a "Good Morning!" You and I we are soooo far behind on this forum, it is not even funny! I have not read all of them yet, I am just browsing here and there. I still cannot believe that my lights are on! It will be a long time before I get back to the norm! My son Shannon and family took me out to eat last night at Cuco's (your neck of the woods.) We were there from 6:00 pm to 11:00 pm just shooting the breeze! Had a good time.

netty, let me know how Freddy is doing. What did he say when I called the other day? Is your electricity on? Am praying to God it is! Still nearly haf a million without power and water! How horrific!

Been reading some of these posts, but am not replying until later. We still have the wonderful bunch of folks, some have gone to Jesus. Love you netty and freddie. Wish you guys were Tomballites. God bless you all!

Irma;-)

 

[CindyM]

I have been through hell and back the past week and I think we all are very fond and grateful to OUR Al.

Thank you from all of us, Netty. It is amazing when you think that, as a PAL, Al takes time to read every post and enforce the owner's rules, and he is a volunteer. Plus he does it all with only one or two fingers with which to type.

David, who pays for this site, pays out of his own pocket. He is a young man and could easily find other ways to spend his hard-earned money, but he believes in this effort.

I feel blessed to know them both, and I feel blessed to know all of you. This is one of the best sites on the internet, IMO! :smile: Cindy

 

[BethU]

Hi Blizna,

I hope scientists all over the world are working on finding a cure for ALS. Every country and every culture has something special and unique to offer, but science itself does not recognize national boundaries. The scientific method is the same in every country. It doesn't matter if a treatment is offered in India or in Indiana. The important thing is: how rigorous has the research been and how reliable are the results?

If there is a PROVEN cure in India or China ... or Indiana ... I'll be on the next plane.

BethU

And a BIG THANKS! to all the volunteers who keep this forum running. This means you, Al, and all the others.

 

[Blizna]

BethU: You probably mistunderstood what I have written No, scientist work differently in each country. It depends on the law system and unfortunately on the lobby groups of religinous people who are often against creating human embryos just for gaining stem cells and many more..this all slows all things down..They simply cant understand its nothing than group of cells, no gift from god but simple biochemistry..
Thats why in those countries can be research further and often it is (in those areas), their government makes no limits for research if it is for people and I really appreciate it.

There is difference between going to clinic for new med testing and going somewhere for miraculous cure...

Generally, the clinics etc. doesnt give you false hope and arent so expensive - they just need to try new meds..

But what I cannot understand are people who promise cure or threathment for PALS and know its fake..I cannot understand how someone could be so cruel and poor..

 

[givenin]

Stem cell cure in India? I am with Al give your head a shake if it was true it would be all over the news wouldn't it?Wouldn't there be more PALS talking about it,yelling from the roof tops! We all want hope we all want a cure. When my husband was first diagnosed'ed everybody had a cure for him from chinese herbs to a little village in china that had the tea/ holes in the head. He traveled to Bangkok allot for work and came back with a vial of sheep stems cells that was supposed to be injected in the butt and thank God he wanted to check it out first to see if the company in New Zealand was legit which it was not and it only ended up costing us $300.00 for the vial which amazed me that customs let him bring it in. The other cure from this guy in Bangkok was a machine that would cure arthritis. This woman from Vancouver that is in India trying this treatment I am sure was not supported by the ALS clinic in B.C and I am sure that they gave her all the warnings about scams but that is all they can do and that is all that can be done here. We can only hope that maybe MAYBE this could be it but I doubt it.
My hope is for the woman in India is that it dosn't make her worse,it is tuff enough dealing with the disease as it is without adding to it with other crap on top of it.
This forum is great it is very informative on all good and bad things that happen to us in this battle and has helped me allot and many others.

Thank you David and Al and the others who put ther time in here keep up the good work

 

[joelc]

The only thing I would like to add here is eventually someone is going to go somewhere and the treatment will help. There always has to be that first person who takes the chance and ends up stumbling up something that helps.
I agree with the cautions being mentioned here, so far stem cells have not helped anyone. But I feel our best chance for a cure is with stem cells. Eventually someone is going to stumble upon how to make them work for ALS.

 

[Zaphoon]

Al,

I think "helpingmum" just seemed way too offended to ge genuine. I think you picked up on that one pretty quickly. You have excellent radar!

Zaphoon

 

[emjoi]

The only thing I would like to add here is eventually someone is going to go somewhere and the treatment will help. There always has to be that first person who takes the chance and ends up stumbling up something that helps.
I agree with the cautions being mentioned here, so far stem cells have not helped anyone. But I feel our best chance for a cure is with stem cells. Eventually someone is going to stumble upon how to make them work for ALS.

No. It doesn't work that way.

Eventually someone, after years of published research, will do trials with the backing of an internationally known hospital or research centre. And then the trials will be published and there will be big announcements all over the place.

It's not going to happen in some mysterious clinic in China or Russia or India or Venezuela.

 

[lostinlouisville]

Blizna

I don't get offend easily about being Religious, But maybe aborting these "group of cells" that are a Gift from God isn't wrong either, Oh us crazy religious people, to think I adopted a 28 week fetus that is now 7 who was scheduled to be aborted one week later, but we just call him Jacob now, not a fetus, not a group of none blessed cells from God.

 

[lostinlouisville]

Just needed to add

I am sorry if I was harsh, but I feel people should be able to talk about how they feel without bashing someone else. I had a Catholic Dad, I have Baptist in-laws and an atheist brother but the one thing we have a like is love and we don't let our differences get in the way of that, It's o.k. to feel differently about issues it's not o.k. to bash someone for being different than you.