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Diaphragm Pacing System (DPS)

ronlin
  • By ronlin · New reply 7:06 pm
  • Discussion in National ALS Advocacy Day · 33 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 ...

Uplifting Postings

ronlin
  • By ronlin · New reply 6:35 pm
  • Discussion in National ALS Advocacy Day · 5 replies · Photos
  • How about a discussion with just uplifting, positive postings? I'll start ...

Cannabis oil

Shirleyanna
  • By Shirleyanna · Posted 5:32 pm
  • Discussion in Familial ALS · 0 replies
  • My son told me that he heard that cannabis oil had been used successfully for ALS. Has anyone heard anything about that ...

clauDETTE

CLAUDETTE196
  • By CLAUDETTE196 · Posted 4:34 pm
  • Discussion in Medicare prescription drug benefit · 0 replies
  • I am looking for answers to my question ? At the moment we are wintering in Florida and so i am away from my als clinic. I developed a case of bronchitis and the local doctor prescribed amoxicillin 875 ...

Genervon GM6 Offers a Sliver of Hope for ALS Patients – PLEASE SHARE

dhuntley
  • By dhuntley · New reply 4:14 pm
  • Discussion in National ALS Advocacy Day · 34 replies
  • Finally, 75 years after Lou Gehrig’s famous speech, there may be some hope for People with ALS (PALS). A small bio-tech firm in Pasadena, Calif., has recently completed a Phase II trial to successfully ...

The Deanna protocol

Mammarika
  • By Mammarika · New reply 1:26 pm
  • Discussion in Familial ALS · 10 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 ...

riluzole and deanna protocol

germangie
  • By germangie · New reply 11:45 am
  • Discussion in Familial ALS · 23 replies
  • We have started my husband on the Deanna Protocol suppliments recently, but he is also taking Riluzole which was prescribed by his doctor. Can he use both at the same time without doing any harm ...

Social Security Disability (SSDI)

ronlin
  • By ronlin · New reply 11:35 am
  • Discussion in National ALS Advocacy Day · 24 replies
  • Husband fights to get Social Security benefits for wife with ALS ** WE ALL NEED TO FIGHT TO CHANGE THIS! ** It's Ridiculous for this country (and the state of Georgia), to treat people so badly. As for ...

PAIN

ronlin
  • By ronlin · Posted 2:03 am
  • Discussion in National ALS Advocacy Day · 0 replies
  • "Quest" magazine from the MDA (Muscular Dystrophy Association) provides great information and there are articles specific to ALS. You can get it [free] online or have a copy sent to your home. Here is ...

Medicaid

ronlin
  • By ronlin · New reply yesterday at 7:47 pm
  • Discussion in National ALS Advocacy Day · 4 replies · Photos
  • If your loved one with ALS has been denied Medicaid by your state, don't give up. I wrote a letter (emailed) directly to the U,S. Secretery of Health and Human Services (HHS) and got results in less than ...

Als

Zoeellen
  • By Zoeellen · New reply January 26, 2015
  • Discussion in Children and families · 1 reply
  • Hello I was diagnosed in 2013 but symptoms started in November 2012 so iam very positive I have purchased Pure Virgin Coconut Oil but I want to get Magnesium Chloride can u use them together I believe ...

infinity

greensmile
  • By greensmile · New reply January 25, 2015
  • Journal · 4 replies
  • infinities of differing lengths differing expansions progressions a few regressions futures approaching attainable some near,some far spanning across the universe passing from room to room exploring each ...

Ventilator options for my mom

asood
  • By asood · New reply January 22, 2015
  • Discussion in Familial ALS · 1 reply
  • My mom needs a feeding tube inserted but we have been told that she may not be able to regain her breathing post procedure and that she may need ventilator for rest of her life. She is in Chandigarh ...

Cognitive/behavioral changes

nimrod2015
  • By nimrod2015 · New reply January 21, 2015
  • Discussion in Familial ALS · 42 replies
  • My 76-year-old mother was diagnosed with bulbar-onset ALS in October after a year and a half of visiting doctors. Her symptoms began in March 2013; the first sign was slurred speech. Now she can no longer ...

Genervon's GM6 to get FDA review

Juerita
  • By Juerita · New reply January 21, 2015
  • Discussion in National ALS Advocacy Day · 1 reply
  • Great news! The FDA is meeting with Genervon in February to discuss possible "conditional approval" for GM604 which appears very safe after phase 2 clinical trials with very good potential for slowing ...

Mouth Problems

Valerie19
  • By Valerie19 · New reply January 20, 2015
  • Discussion in National ALS Advocacy Day · 21 replies
  • I have had a feeding tube since September. I am diagnosed with bulbar onset. Swallowing has diminished significantly. I have to drink liquids with baby sips or I choke. Has anybody noticed that your mouth ...

Pill starts with L

Daunt
  • By Daunt · New reply January 19, 2015
  • Discussion in Familial ALS · 4 replies
  • A few weeks ago a woman from another country posted about pills made in another country that helped some ASL people. It started with an L. like lusana or something similar..does anyone have information ...

Feeding tubes

seattlelori
  • By seattlelori · New reply January 19, 2015
  • Discussion in Familial ALS · 30 replies
  • My doctors have recommended a feeding tube, although I still eat (albeit slowly and small pieces). I have lost some weight but not more than I would have liked to if I was normal. I feel like I eat healthy ...

Bone sclerosis and lucency

arcticseawitch
  • By arcticseawitch · Posted January 17, 2015
  • Discussion in ALS and the military · 0 replies
  • Hiya, I was given a copy of my X-ray report as the dr had said my bones were stripped when I had hairline fractures of my left foot. I thought that meant osteoporosis but didn't,t believe hi as have fallen ...

ALS- Unresponsiveness

asood
  • By asood · New reply January 15, 2015
  • Discussion in Familial ALS · 4 replies
  • Hi all, My mom 70 years old, in India, was diagnosed with ALS in April,2014. Just on Dec31st night she could not speak and swallow food even very slowly. Her movements became almost nil. As one would ...

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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.