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helpingmum

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I have been monitoring these forums off an on for a couple years, my mom has ALS and has most recently decide to travel to India for Stem Cell treatment. Everyone she has talked to have been very positive. I thought anyone suffering with ALS would be interested in it. Her blog is very personal, but I would be happy to share the address to those that want it, she is now recounting her time in India, her treatment started two days ago. It will be very interesting informatin. Please feel free to email me at [email protected] if you would like to know more.
 

Al

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Of course they are going to be positive. Do you really think they would say " Give us 30 to 50 thousand dollars. We will drill holes in your mums head and stick in God knows what and send her home to Canada with an unknown and unproven treatment where there is no legal recourse if she dies. I can not believe that people that are smart enough to accumulate this kind of money to do this are still falling for this. Like P.T. Barnum once said, " There's a sucker born every minute" Sorry if I sound jaded but you say you have been monitoring for 2 years and just now want to post about a stem cell program in India? India you say? Sounds like you are a shill for them. I don't think you are helpingmum at all. I think you are trying to help yourself.
AL.
 

mamaoftwo

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This seems a little harsh to me. This girl is probably hanging on to a desperate hope and wanted to share the experience in case it can be of use to others.
I too havent heard of any success with stem cell, quite the contrary, but we are all allowed to live with hope, arent we? I know you no doubt feel that you've been around the block and have seem enough scams to know one when you see one - and your're right, I get that. But let her have a little hope even if it's misplaced. What harm can it do at this stage? Or am I missing something completely?
 

John1

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Mamaoftwo,

I'm thinking Al is using a sledge hammer approach to get this woman's attention, if in fact she's for real. It is hard to believe that someone who has monitored the ALS scene for two years or more could fall for this rubbish. Generally it's the newly diagnosed who know no better. What harm you say in travelling to a third world facility to receive substandard "health" care. Lots. Several PALS died or suffered severe side effects after travelling to Beijing for "stem cell" treatment at another quack's hospital. Unless she is very rich she is wasting money that could be used much better to improve her quality of life now. If she IS very rich, the money would be better spent on ALS research. Now that really would offer some hope.

-John
 

mamaoftwo

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Ok, John, I understand what you say. I guess I am not on to the scammers yet and didnt realize this might be bogus. But arent there also people who still believe, in spite of all medical evidence to the contrary, that stem cell is the cure-all treatment. I thought maybe she really believe it might save her mother. At any rate, I appreciate what you say and if a rude awakening is what is needed, then it certainly worked.
 

helpingmum

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Guess I made a mistake in posting here.

My apologies for posting. I was under the assumption this was a loving open environment. I haven't read all of your forum, obviously I've missed something. I don't follow daily, in fact I haven't been here for a few months. I've been meaning to post as I seemed remiss in not sharing. Whether her treatment works or not. No Drills that's for sure. And no side effects, other than one woman who contracted delhi-belly.

If you happen to have some results of people seeking treatment in India I would love to be directed to them. That may better than trashing me. Unbelievable. And I will share this with the ALS society here, I don't think you should be allowed be so brutal.

My mum has spoken to many patients of this Dr. I am not here to try and convince anyone, but I thought since my mom has offered herself up as a guinea pig as a last ditch resort to save her own life, someone would want to know here. I certainly am happy that for two months she has hope, as all the Dr's and obvious some people here have given her the reverse of hope.

All I can say to Al is, think before you write. I know who you are, I've seen your article in the Globe and Mail and I am very sorry you have ALS. But, it doesn't give you a right with such power over people on a forum to burst all the hope bubbles you can.

Let's hope you are wrong. I am very disappointed at being treated like this from you on an open forum.

Thanks for the complete an udder lack of support. I'm certainly glad I didn't send me mom here to post!
 

Icanmanz

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Al said:
Of course they are going to be positive. Do you really think they would say " Give us 30 to 50 thousand dollars. We will drill holes in your mums head and stick in God knows what and send her home to Canada with an unknown and unproven treatment where there is no legal recourse if she dies. I can not believe that people that are smart enough to accumulate this kind of money to do this are still falling for this. Like P.T. Barnum once said, " There's a sucker born every minute" Sorry if I sound jaded but you say you have been monitoring for 2 years and just now want to post about a stem cell program in India? India you say? Sounds like you are a shill for them. I don't think you are helpingmum at all. I think you are trying to help yourself.
AL.

Hats off to you, Al! I agree with you 100%! If that was the case this planet would be als free!

Irma
 

patricia1

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Al is very protective He is looking out for us I for one have been scammed many times .Desperate people do desperate things A word of caution. I guess if you think your mom is dying and she has nothing to lose.Your wrong She could get very very sick in India away from the states Which can be very scary. God Bless you and your Mom.
 

helpingmum

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The Facts - if you know of any scams in India please share them

It would be most helpful if people know about scams in India if they could fill me in. I most likely won't give out mom's blog to any more people for fear of this hopelessness spreading to her.

But since this is a discussion forum for all to participate in, I would be very grateful for information about any scams in India.

Also, perhaps you should start a folder on the main forum page for scams, it would be easier than trying to dig through all the posts.

All the treatments are different, my mom has chosen this not me. She has read alot and interviewed alot of people. And perhaps, hopefully, one day because of all these tests there will be a cure.

Thanks for the help if you can provide it.
 

alicesangels

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hope

hello all,
My Mom passed in 2003,,,this is the first time I have been in a ALS forum for awile, like 3 yrs. I was her caregiver from first diagnosed till she passed.
Go for it,,whatever your Mom wants,,,do it
Jeannie
 

brooksea

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helpingmum,

Let us know the outcome of your Mums's experience.

If she makes great strides against ALS, please , do let us know!

All of us will be waiting and wondering about how much it will cost and whether our loved ones will be able to talk or walk again.

By the way there is a "Scam" watch in front of the forum.

I'm very sorry if you are for real, but perhaps you need to research more.
 

helpingmum

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Trust

I can see times have changed greatly in that no one trusts anyone, mostly I suppose because I am new. I'm not selling anything. In fact my mom's blog is basically a diary of this adventure she is going on, I haven't said it's going to work, and yeah it could kill her, appreciate that reminder. It has been her decision and she has struggled with it. It has renewed hope for us for these few weeks and I am grateful for it.
I doubt anyone is going to hop on a plane and go to India because of my post. I think I would have to be a little more convincing.

I have spoken with a woman and mom met her last week in India who had the treatment for paralysis and she has had improvement, she's actually a motivational speaker in Colorado. I think the stem cells (and they are all different I know depending on where you get the treatment) work better if you don't have some disease in your body making you ill in the first place that kind of counteracts the stem cell good. My mom's doctor in India thinks she started with Lyme Disease and there is a long story there, but I'm not going to replay it. If you've just had an injury then it may be easier for the stem cells to repair. I don't know everything, but learning lots over the past two years, but mostly recently as my mom does all her own research.

Not selling anything, not a crook. But I think it is important information. I only posted for people to follow along that were interested. Mom is going to video tape herself as she has only just begun treatment, that way she will be able to show if she improves. She hasn't had any physio, but they are trying it there, we'll see what happens with that.

She is going to get sick as they are going to put her back on IV antibiotics, which makes her herx(sp?) terribly, (for lyme if she has it) so that won't be fun to be sick so far away and I imagine that the IV drugs will be more concentrated than the pills/liquid she used to take to make matters worse.

I think her friend who is a writer is trying to get her on Fanny Keifer when she gets back, I'm sure they will go through all the scam issues on that as well. I looked through your scam page, but couldn't find anything on stem cells, did I miss it?

The woman in colorado who was paralyzed (still is but regained bowel so far) is trying to get on with Oprah. It is interesting times and it is important to keep hope I think. I admire my mother greatly for her courage, she is a very strong willed and determined person. and I'm just tagging along for the ride and supporting her any way I can.

Am I to assume that Al was being rude to me, in hopes of pissing me off and making me rebuttle?

It worked.

There are lots of people being diagnosed every day with this disease, I think you should ask more questions before being so rude to newcomers.

Thank you to those that have had some kind words, even more appreciated. I don't mean to be angry, but Al's response caught me extremely off guard and seemed very inapporiate without any context.
 

Al

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Hello helpingrmum. I am sorry if you are really who you say you are for my seemingly harsh remarks. I spend anywhere from half an hour to 1 hour every day, every single day removing advertising and known scams from this site posted from all over the world but mostly from Eastern Europe and do you know what they do? They join and post the same day. Just like you did. I have not heard of stem cell implants in India. We have some members here from India and to a one they complain of lack of care and facilities in India for ALS. It just seemed very strange you would post the first time you EVER post and ask people to contact you about a clinic in a foreign country known for the poverty there. Your outrage should be directed at the people who took your money not at me. We do have a caring group here. We care enough to question people who appear to have an agenda. Your post came across as that type. You said that you have read here for a few years and didn't know we had a scamwatch feature. I'm sorry you didn't see that before. I have never burst any one's hope bubbles. I promote hope and positive thinking where there is hope but do not condone false hope.I am a realist and thought that even though your profile says you are Canadian there is really no way of knowing if that is true or not. If you read the Globe though you must be Canadian. I am truly sorry for offending you or your mother but you are not the first to be here for ulterior motives. The ALS Society of B.C. is aware of our site and has cooperated with us in the past year to remove postings here from people purported to be representing them. Feel free to ask about my dealings with them. I have nothing to hide. As I said in my original post, sorry if I sound jaded but maybe I am just a little.
Al.
 
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Al

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Well I did get your attention and do you know what the first thing the salesmen do when they reply? They call me rude, insensitive, ignorant, mean spirited and hope killer and then trash the site. Yes it happens every month or so. Most times when something is suspect it is just removed by the Administrator or Moderators and the person is asked to reply to a Private Message. I have not received one reply in 2 years. I would love to see some documented proof that any treatment anywhere gives more than a few months benefit. So far there is none. That isn't rude, it's the truth. Sorry I come off harsh but I'm hard to convince. As you admit, times have changed and people need to be wary.
That's part of the support of this site. Making people who may be taken advantage of, more wary. We have over 3000 members. Most are happy. Usually it's first time posters that aren't. I hope you can understand my position. I do understand where you are coming from.
AL.
 

MtPockets

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Stem Cell Procedures AGAIN>>>>>>

Helpingmum,
I'm sorry you were offended, but below is just one example of hundreds we have seen on this site. If you go to the search icon above and put in stem cell, you will see some of the same results mentioned below.

No one on this site is out to kill anyone's hope, but false hope is sometimes worse, and being scammed is criminal, in my humble opinion.

I totally support AL and his comments to you, as we have to address this same subject about every 2 weeks here. It will never go away as long as someone is out there trying to get your money.

God Bless your mum and you, and I hope and pray for the best for her.

We just wanted to warn you these things are dangerous. and DO NOT WORK. Sorry.

God Bless
Capt AL
________________________________________________
Quote from previous post:
Originally Posted by MtPockets The results of this "treatment" you are speaking about is, It does not work. There is no cure for ALS, period.

This is their, "OPERATIVE PROCEDURE: With the procedure of cell HLA-matching, the surgical transplant of olfactory ensheathing cells procedure by using stereotactic technique was performed on September 10, 2006. 100 µliters containing approximately 2,000,000 cells was injected into the corona radiata of the patient’s frontal lobe bilaterally based on the Flair MR imagin".

The great results for this patient who was basically paralyzed, was that she could move her tongue a little better? And her bank account was drained to the tune of $50,000 to $100,000, just so she could move her tongue a little better. Come on now get real, face the real world. It did not cure her of anything. Is this the kind of torture you want for someone? Much less the false hope this gives to people.

This scam does not work, has not worked, and will not work, at the present time. We are all hoping and praying for a breakthrough in this research and maybe one day soon it will come. Do a search above on the search icon and enter stem cell treatment and see what you find. 100% of the people who have tried it gave their money to people like this for what? NO results, for nothing, but to fatten someone's bank account. Some of these people in these foreign countries are not even qualified Doctors by our standards in the USA.

I'm sorry but when I see other ALS patients being sucked into these scams I really get mad. Right now they are discovering the country of China is putting poison in our dog, cat food, and now this week they found contaminants in the chicken we are buying from them. God knows what else is in the foods we are buying from them, just because businesses can buy CHEAPER foods from China than from our own farmers and manufactures.

Do you think I would trust them to open up my skull or my loved one's skull and put in some experimental stem cell that they got from a pig, sheep, goat, or whatever? NEVER.

Hey, it's your choice what you do with your money, but don't try to con other people into this false hope treatment.

As for me my money is better spent on a nice vacation with my loved ones. Something they can remember after I am gone.

God Bless
Capt AL
 
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