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ABC’s of why coconut oil may help people with ALS!

By BirdmanTwo · New reply May 13, 2012
Discussion in Familial ALS · 9 replies
A. Some people have expressed their opinions saying coconut oil is Snake Oil, a scam, there are no studies proving coconut oil helps, it gives people false hope.” These same people have also said there ...

BirdmanTwo's Incorrect Information

By sumdude007 · New reply May 8, 2012
Discussion in Familial ALS · 11 replies
I just want to let anyone know that may have read It that BirdmanTwo's Information about ALS was incorrect. ALS, unfortunately, is an autosomal dominant gene which means (without going into all the scientific ...

Here's our story...Can the ALS be wrong?

By CROSADO8 · New reply May 5, 2012
Discussion in ALS and the military · 5 replies
My husband was on 150 mg of the drug venlafaxine twice a day for the last 5 years, which is the generic version of Effexor. While on this medication, he had no weakness of the hands or legs. His doctor ...

Neuraltus CEO and volunteers in DC last week

By edjnc · Posted April 30, 2012
Discussion in Children and families · 0 replies
Andrew Gengos, Neuraltus CEO, along with a leader (Tom Murphy) and member (Michael) of ALSTUN...ALS Treat Us Now, spent 3 days this week on Capital Hill, speaking mainly with key legislative leaders ...

Turning your hands

By CROSADO8 · New reply April 30, 2012
Discussion in ALS and the military · 3 replies
My husband was diagnosed with ALS, but we have a question well many but this one for now. My husband cannot turn his hands at all when he has them strecthed out but when he pulls them back to his waist ...

Sharing Diagnosis with Family

By amkub · New reply April 29, 2012
Discussion in Children and families · 16 replies
We are struggling with how/when to share my husband's diagnosis with family. We just received the diagnosis almost 2 weeks ago and am trying to steady ourselves before sharing with our family. Unfortunately ...

ALS & Coconut oil

By SusieBee · New reply April 27, 2012
Discussion in Familial ALS · 40 replies
Hi Has anyone or family member with ALS using Coconut oil ...

Acupuncture and ALS

By kentingram1005 · New reply April 25, 2012
Discussion in Children and families · 9 replies
Has anyone had any experience with acupuncture to help treat the symtoms of ALS ...

There is always hope!

By hopeful_relative · New reply April 22, 2012
Discussion in Children and families · 11 replies
I am reaching out to those of you who need someone to talk to. I cared for my uncle during his disease and I know how alone caregivers can feel. If anyone needs someone to simply listen to them, or are ...

Husband was just diagnosed with ALS

By amkub · New reply April 18, 2012
Journal · 31 replies
Last Monday, my husband and love of my life was diagnosed with ALS. We are feeling so overwelmed right now with all kinds of emotions! We are trying to absorb it and and how to share it with family members ...

Final Rule 2900-AN60

By Hisister · New reply April 16, 2012
Journal · 84 replies
I've noticed where several of you have mentioned the passing of this Final Rule 2900-AN60 in relation to ALS. Could you please email me where I can find information on it. I have no idea what it is. sheborden@westelcom.com ...

Bathroom Use

By ALSDaughterLR · New reply April 15, 2012
Discussion in Children and families · 13 replies
My mother has been diagnosed with ALS. She is slower progressing. She is now basically wheelchair confined. She is able to transfer herself from her lift recliner to her wheelchair and her wheelchair ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

By John2 · New reply April 15, 2012
Journal · 59 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

Coconut (Snake) Oil?

By mike405 · New reply April 9, 2012
Discussion in Familial ALS · 25 replies
The idea of coconut as a credible "alternative" to conventional medicine has been bandied about for quite awhile. What many people don't realize is that serious questions have been raised about the scientific ...

More stuff for posterity

By bmw8660 · New reply April 3, 2012
Journal · 1 reply
Some weeks have past, and I'm not better, can't say I'm worse but I know it hasn't gone anywhere. I had one day in February when I was walking around doing usual morning routines before work, then wham ...

Dr. Banks FDA Conference Call

By GBOR · New reply April 3, 2012
Discussion in ALS and the military · 1 reply
The Als Treat Us now steering committee has arranged for a 1 hour conference call with Dr David Bank from the FDA. If you would like to participate we have openings for up to 10 additional participants ...

coconut oil & Magnesium/chloride

By llbjgb · New reply April 2, 2012
Discussion in Familial ALS · 29 replies
does anyone have any comments on coconut oil and magnesium chloride for a treatment for als ...

NY Times Best Selling Author interviews ALS Treat Us Now.

By edjnc · Posted March 28, 2012
Discussion in Children and families · 0 replies
Several of the Treat Us Now folks arranged an interview held this afternoon with the NY Times Author of Luckiest Man: The Life and Death of Lou Gehrig He will be helping us emulate what the HIV and cancer ...

ALS Care in VA Hospitals

By desertcat6 · New reply March 19, 2012
Discussion in ALS and the military · 62 replies
I am very concerned about the type of care I am receiving from the Department of Veterans Affairs (VA) through the Charlie Norwood VA Medical Center in Augusta, Georgia, and the lack of clear guidance ...

Which Eye Gaze System To Use

By maryajb · New reply March 16, 2012
Discussion in National ALS Advocacy Day · 4 replies
Can anyone suggest an eye gaze system to use. I think there is Tobii and Dynavox. Does anyone have experience with either one of these. Please let me know what you recommend ...

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