ALS Forums

[solidsnake007]

I have to say for such a large ALS support forum.... where are the topics of hope, the success stories, the mentions of what works and what doesn't. This is part of the problem, no centralized location for people to share this data.

 

[faithandlove]

Do you have any hope, success stories, and information of what works and what doesn't?

As a fast progressing person with a terminal illness, I'm interested to hear what you believe will help me. Can you give me advice to help me walk again? I have one finger left to type this message. Any suggestions to stop the motor neurons from dying in my brain, so that my muscles will work again?

Your input is welcome.

Hugs,
Deb

 

[swalker]

Messages like this usually come from trolls.

Steve

 

[solidsnake007]

No disrespect intended. It was a question and I would like an answer back. I am very active in this community and have a treasure trove of research I have done with several notable scholars.

 

[solidsnake007]

Every situation is different, with this disease there is no one solution fits all, because there are different ways in which a person may have gotten it.

Do you have any hope, success stories, and information of what works and what doesn't?

As a fast progressing person with a terminal illness, I'm interested to hear what you believe will help me. Can you give me advice to help me walk again? I have one finger left to type this message. Any suggestions to stop the motor neurons from dying in my brain, so that my muscles will work again?

Your input is welcome.

Hugs,
Deb

 

[Angiegal]

Am I misunderstanding something? Pretty sure there's an area for hope.....(thinking Tillie's Trees), jokes (Frank is good for those).... I see threads for loads of stuff, if you don't see a thread that you need, start a new one in the appropriate area (since it's such a large community). Success stories? Not sure what you mean..... I did manage to open that pesky lock I've been having issues with....

Angie

 

[solidsnake007]

Thanks for the response Angie, I went to the stories of hope page and it appears everything was removed? It was mostly greyed/locked out.

 

[lgelb]

If you have published or cited peer-reviewed research in the field, Snake, please list it in "Research News."

If it is speculation or anecdotal, "General Discussion" or "Off Topic" may be apropos, depending on how off the beaten trail it is.

If it is a device or aid that you have found helpful, we have a Tips & Tricks subforum.

But whatever you do, please don't waste the precious time of P/CALS with vague reference to your "treasure trove" -- post something specific enough to be helpful, or not at all.

Best,
Laurie

 

[solidsnake007]

That was just simply a reference. I am a researcher, it is something I like to do. A forum is not a place for such research, nor any for that matter. It is the place for communication between people. I very much like this forum.

I was able to finally make a post on the Stories of Hope page, hence this post is no longer needed, it can be closed and or deleted.

Thank you.

 

[diagnosed2016]

Perhaps the ALS TDI forum would be more your speed since you seem to think you are an expert researcher. They can give you more info on specific protocols and alternative things to try. As for hope and sunshine and rainbows, I think you are asking much of people here. I hope that this disease is cured before it afflicts my children.