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sadandconfused

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Dec 26, 2010
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64
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Loved one DX
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US
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mn
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bloomington
Why are some people so negative here. I believe like myself people are looking for support and help and not someone saying oh that won't work or why would you do that. If someone wants to go and do something like see a herbal doctor or do stem cell treatments than its up to that person. The people who are saying they are going to do that and want some imput they should not get negative imput. Talk about crushing hopes and dreams.
Most people have just that hope. So why not let them have it and not destroy it.
Just letting my feelings know. Its sad to see. My mom has it and she is waiting to go to Germany for stem cell treatment. Don't tell me its a scam I don't want to hear it. That is her wish and I honor it. I have faith and hope that it will work.
Thanks for listening.
 
Most people here don't mean to appear negative. I think they just want to help you learn from thier experience or the experience of someone they know. Because of the terminal nature of ALS, many PALS are desperate for some hope. There have been so many documented scams artists that have stolen the funds (not to mention hope) of PALS. Funds that were needed for quality care that would have made the remainder of life so much better for PALS.

There are very few here that have not looked into anything and everything possible to halt the progress of this disease.In our area, there is some success with ceftriaxone IV therapy at Vanderbilt University and stem cell trials have begun at Emory University. We are hopeful.

Responses might sound negative, but I think that just comes from the frustration we all feel when a promising treatment (example Lithium) fails. Ask questions. There are some incredibly intelligent people on this forum that have really researched the options. But know that, when the decision is made to go ahead and try something, we are all behind you, praying for a positive outcome, and waiting to hear the results.
 
This is a public forum and all are entitled to their views, as long as they are respectful of others. As for negativity, some folk have been on here for several years, seen and tried treatments that may be new to newer folk. And if they did not work for them, or every other PAL they know, than they can only express what in their experience was/is the case.

All the best to your mum.
 
I do not think when it comes to someone trying something to help people's intent is to be mean or negative. Rather I believe that it is an attempt to be protective and keep people from being let down or to spend unnecessary funds. As my Dr at Emory told me, if there was a cure out there he would be promoting it. I think everyone here is trying to help each other learn form their own and previous members experiences. Whatever your Mom decides the entire forum will be behind both of you, wish you the best and many will pray for you.
 
We just don't want money to be wasted or false hope on the rampage. Remember, some of us have already tried many of these things and to no good. In part though, you are right in that if people need a "pill" or a trial to keep going on, what harm can it do? Those who stand by, want something to do.
 
I am afraid I have sounded negative in a few posts lately.

The "do I have ALS?" posts do get to be trying. Seeing a medical professional might eliminate some of the obsessive behavior.

Yes; I want to find a cure or a way to regain lost ground. My Doc tells me that currently there is not a way to do this. Not trying to be negative...I am afraid that this is currently the way that it is.

Please do not get me wrong. I am a fan of chinese medicine such as acupuncture, massage, herbal balms etc. Unfortunately, I am just afraid that they do not work to cure ALS.
 
sadandconfused, I just wanted to comment that there are old timers here who type with one finger only; and the words are sparse. It isn't meant to be sharp sometimes, but may sound that way. I wish you well.
 
I agree with Missy... nobody is here to squash dreams, but we've all been in that early diagnosis I'll try anything panic sort of stage, and what we're trying to do is help you learn from our experiences so you don't have the experience of looking back one day and saying "I wish I hadn't wasted precious time and funds on that when we could have... gone on a trip or had funds to hire extra help...." Saying what you want to hear just to make you feel better isn't neccessarily in your best interest in the long term.
 
First of all this is a support forum. If telling the truth is negative, then that's what you get here. To me, that is support. No BS, no lies or false cures. Sometimes the truth hurts. Nobody here will tell you that this disease doesn't hurt. Some other sites will even try to sell you crap telling you that it may be helpful. You will not get that here. If the truth scares or discourages you then maybe you need another forum. When you accept reality then you will find some of the best people in the world here offering knowledge and support.

AL.

BTW- Typed with 1 finger.
 
I watched something on TV a couple of months ago, the network was exposing a doctor who claims he is able to cure Als. One of the patients cried, he just want to get well, something like that. It was sad watching him. And cruel of the doctor to play scam like that on people desperate for cure.
 
Since Al has taken his time and strength to respond with one finger typing, I want to add that one of the things that made me comfortable here on this particular forum is that false promises and scams are firmly kept off this place--Both Al and our other moderator, Joel, as well as David do that for us. When reality settles and time passes, the false hopes are actually a "negative". If you have to defend to every person who reads or hears about a cure why you aren't willing to "just give it a try", it is exhausting and unsettling. Support for one another here is real, based on the ways we learn to solve problems, suffering with those who are newly diagnosed or those whose patient or loved one has recently died. Suffering for every loss we experience. That is support.

And dear AL, your sheer number of posts make you an "old timer". Your experience and wisdom is something we all benefit from.
 
I can appreciate the idea behind the OP though. Although most folks mean well, there is no need to be abrasive about it. Some people are just struggling and educating them with kindness and sensitivity instead of brash and abrasive talk is much easier to deal with.

Regardless of your ailment, you should always treat others with respect and consideration.
 
As has been said many times before, it is only the people who start numerous threads asking the same question and don't listen to the answers they are given. These people try our patience and we tend to get a little short with them. No one starts out to be abrasive.
 
Al....I remember my very first post here in 2006 when I was so optimistic about finding a Lyme Disease doctor willing to treat Andrew. Thousands...and I mean thousands of dollars later......should have listened to you in the first place. Guess we had to find out the hard way. Breaks my heart when I see newbies....because I remember the feeling like it was yesterday..that there has to be some sort of cure. Now our focus is making my hubby as comfortable as possible with what time he has left on earth. No one is trying to squash dreams.........we all ultimately want the same thing...a cure!
 
Amen to that!
 
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