The ALS Association Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Should Tubes Be Tucked In Pants?

Duvie
  • By Duvie · New reply 12:43 am
  • Journal · 38 replies · Photos
  • It might feel natural and seem like a great idea to tuck your long tube in your pants, bra, bikini, or wherever. However, as we soon found out, it wasn't so great. No medical professional of any kind ...

Cannabis oil

Shirleyanna
  • By Shirleyanna · New reply 12:33 am
  • Discussion in Familial ALS · 15 replies
  • My son told me that he heard that cannabis oil had been used successfully for ALS. Has anyone heard anything about that ...

Diaphragm Pacing System (DPS)

ronlin
  • By ronlin · New reply yesterday at 6:50 pm
  • Discussion in National ALS Advocacy Day · 54 replies
  • I believe in the DPS - the sooner the better. My husband passed away but it was because this had been mistakenly left turned off. Don't listen to those who say your FRS has to be at a certain level ...

The Deanna protocol

Mammarika
  • By Mammarika · New reply yesterday at 4:30 pm
  • Discussion in Familial ALS · 43 replies
  • Hi. I have been taking AKG, AAKG, cur cumin and coconutoil since August 2014. And I didnt make any progress. So since a week ago I changed to the Deanna protocol. How long does it take before I will notice ...

FDA now reviewing new drug

Juerita
  • By Juerita · New reply yesterday at 4:25 pm
  • Discussion in ALS and the military · 1 reply
  • The FDA is currently reviewing an application for accelerated approval for GM6. This is the only drug in 20 years to demonstrate real benefits in slowing ALS in clinical trials. We patients started a ...

FDA revieiwing new drug

Juerita
  • By Juerita · Posted March 2, 2015
  • Discussion in Familial ALS · 0 replies
  • The FDA is currently reviewing GM6 for possible accelerated approval. This is the only drug in twenty years to demonstrate safety and efficacy in slowing or stopping ALS. We need to urge the FDA to grant ...

Tell someone of importance to do the right thing

Mic4life
  • By Mic4life · New reply March 2, 2015
  • Discussion in ALS and the military · 4 replies · Photos
  • To everyone that has or knows someone they care about with ALS. The new hope for us all is in GM6 if you do not know about it look below there is a website to learn more. I sent this out to my state and ...

Deanna Protocol

germangie
  • By germangie · New reply March 2, 2015
  • Discussion in Familial ALS · 21 replies
  • Does anyone have the exact updated ingredients of the Deanna Protocol, I know the main ones but hear there are new supplements being added like oxaloacetate. Thanks for the reply ...

Breaking news - Swallowing Expansion Device

Duvie
  • By Duvie · New reply February 28, 2015
  • Journal · 13 replies · Photos
  • National Foundation of Swallowing Disorders has announced that the manual swallowing device Dr Peter Belafsky invented has been approved for 1st round of clinical trials. For the full story: http://bit.ly/1BiKMLa ...

any advice please

muffin24
  • By muffin24 · New reply February 27, 2015
  • Discussion in National ALS Advocacy Day · 3 replies
  • hey everyone. i just wanted some input im seeing my neurologist in about a week for some scary symptoms. what happened with me is that i took this antibiotic called cipro and i didnt know there were two ...

For Members Who Do Not Have Balloon Tubes or Use Catheters

Duvie
  • By Duvie · New reply February 26, 2015
  • Journal · 9 replies · Photos
  • Many times it's difficult to find ways to secure the tube from being taped over causing a bend or excessive lean which applies pressure on the stoma. Applying excessive pressure to the stoma allows the ...

Uplifting Postings

ronlin
  • By ronlin · New reply February 26, 2015
  • Discussion in National ALS Advocacy Day · 21 replies · Photos
  • How about a discussion with just uplifting, positive postings? I'll start ...

PQQ

sassilou75
  • By sassilou75 · New reply February 25, 2015
  • Discussion in Familial ALS · 4 replies
  • My mom, who is newly diagnosed this past Nov 2014 and has been having symptoms at least a year before that, is about 4 weeks into the Deanna Protocol. Today in my internet research, I came across PQQ ...

smile.amazon.com

ronlin
  • By ronlin · New reply February 25, 2015
  • Discussion in National ALS Advocacy Day · 4 replies
  • Are you familiar with smile.amazon.com ? It is the same as amazon.com except that a portion of your purchase will go to the charity (anything) of your choice - and it doesn't cost you a thing. Whenever ...

If it smells like a Rose

Ruah
  • By Ruah · New reply February 24, 2015
  • Journal · 17 replies
  • I developed slurred speech in Nov 2014. EMG on left arm and leg negative. My speech and gait are so impaired I had to quit my job as a pastoral minister. I am 65. Gait is getting worse. Purchased a walker ...

ASEA

Mammarika
  • By Mammarika · Posted February 24, 2015
  • Discussion in Familial ALS · 0 replies
  • Hi. I wonder I if anyone is taking ASEA. How much? And if it has helped I some way ...

Free Gravity Bags

melloddc
  • By melloddc · New reply February 23, 2015
  • Discussion in Familial ALS · 3 replies
  • does anyone know where you can send or give your excess gravity bags ...

My Life with ALS ... so far

jellis86
  • By jellis86 · New reply February 17, 2015
  • Journal · 44 replies
  • It's been nearly 2 years since being diagnosed with ALS (Feb 14, 2013). I suspected as much a good 6 months prior. But doctors don't want to talk about maybe....especially when it comes to an incurable ...

Come join us in our social networks

John2
  • By John2 · Posted February 16, 2015
  • Journal · 0 replies · Photos
  • From: John Novack, Communications Director, Inspire 2/16/15 Dear members, We are grateful you have connected with us on here on http://www.inspire.com. We invite you to join us on one or more of our social ...

ENFit Connections With Only One Hand

Duvie
  • By Duvie · New reply February 16, 2015
  • Journal · 18 replies
  • Reading some of the comments, I've realized that there is going to be a huge problem connecting the new ENFit connections for patients who only have the use of one hand. How are they going to screw the ...

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About this community

The ALS Association Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by The ALS Association, an Inspire trusted partner.