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

HUMOR IS ENCOURAGEMENT TOO...

Survivor29
  • By Survivor29 · New reply yesterday at 7:27 pm
  • Journal · 96 replies · Photos
  • HUMOR IS ENCOURAGEMENT TOO... FUNNY HUMOR...DRY HUMOR...ODD HUMOR...HOENST HUMOR, ...MAKE YA GRIN & SMILE HUMOR,...DELAYED- REACTION HUMOR, ... AAAAH OK, "I'LL GIVE IT A TRY" HUMOR,... SILLY HUMOR ...

Abnormal body movements

eyetalk
  • By eyetalk · New reply yesterday at 2:54 pm
  • Discussion in ALS and the military · 4 replies
  • Was diagnosed with spinal ALS in 12/13, but had symptoms at least 6 mos. earlier. About March, 2014, I began having sporadic muscle movements, lasting a couple minutes to 20 min. or so....sometimes affecting ...

CARRAGEENAN & SULFA, SULFITS, ETC. WHAT'S IN YOUR HEALTHY FOODS???

Survivor29
  • By Survivor29 · New reply yesterday at 10:42 am
  • Journal · 32 replies
  • WARNING: DOES YOUR ALMOND, COCONUT, SOY, RICE, OR OTHER NUT MILK CONTAIN THIS INGREDIENT??? "CARRAGEENAN "…. SULFA, SULFUR, AND SULFITE AND ANYTHING WITH SIMILAR PREFIX OR SUFFIX IN THE WORDING? REGARDLESS ...

Diaphragm Pacing System (DPS)

ronlin
  • By ronlin · New reply May 22, 2015
  • Discussion in National ALS Advocacy Day · 93 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 ...

Lunasin (Lunarich)

sassilou75
  • By sassilou75 · New reply May 22, 2015
  • Discussion in National ALS Advocacy Day · 34 replies
  • Hi, my mom has ALS, diagnosed last November. She has been on the Deanna Protocol since Febuary along with creatine x3/day. Her arms have gotten significantly weaker, along with one of her legs. We came ...

Bulbar ALS

Ajay_Aeri
  • By Ajay_Aeri · New reply May 22, 2015
  • Discussion in Medicare prescription drug benefit · 19 replies
  • Dear All, My mother has been detected with Bulbar ALS (got to know this today). I'm totally lost. This is my first day of dealing with this. Would appreciate tips/treatments/doctors anything that would ...

Tensioned jaws

Mammarika
  • By Mammarika · New reply May 21, 2015
  • Discussion in Familial ALS · 4 replies
  • Hi I have a big problem. My jaws are very tense. And I can't do anything about it They press together without me wanting it and it drives me crazy. Anybody else with the same problem? And if, what do ...

HOW PAIN MAKES US FEEL...DRIFTING AWAY

Survivor29
  • By Survivor29 · New reply May 20, 2015
  • Journal · 18 replies
  • SOMETIMES PAIN HITS US IN WAVES,,, SOME TIMES WE DRIFT AWAY FROM THE MANY THINGS WE WANT TO DO .... BECAUSE WE SIMPLY DO NOT HAVE A CHOICE.... https://youtu.be/0a5WyAjL1MM Waves by Mr. Probz Lyrics: My ...

ENFit Connections With Only One Hand

Duvie
  • By Duvie · New reply May 16, 2015
  • Journal · 44 replies · Photos
  • 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 ...

deanna protocol

newfie123

Newly Diagnosed PBP

christie98
  • By christie98 · New reply May 8, 2015
  • Discussion in Familial ALS · 19 replies
  • I have just been diagnosed with Progressive Bulbar Palsy (1 week) and I have a lot of questions. Right now my speech is very bad and I am having a hard time swallowing, but still eating foods. I have ...

Weakness

Brindvasi
  • By Brindvasi · New reply May 8, 2015
  • Journal · 14 replies · Photos
  • I have Bulbar ALS for 2 years. I am starting to lose dexterity in my hand. Does this mean it will progress to arms and legs soon. Has anyone experienced it and fast the progression and what can be done ...

What trigged your ALS?

Mammarika
  • By Mammarika · New reply May 7, 2015
  • Discussion in Familial ALS · 16 replies
  • Hi I have found through blood tests that my ALS is genetic. Horrible to think that my children and siblings might have the gene too. But I'm totally convinced that some things trigged it. That you can ...

Hope Now for ALS

Juerita
  • By Juerita · New reply May 6, 2015
  • Discussion in National ALS Advocacy Day · 10 replies
  • Looking forward to seeing everyone in Washington DC next week. If you haven't already heard, PALS are gathering at 1:00 Monday at Freedom Plaza across the street from the JW Marriott to advocate for faster ...

Methylcobalamin

Boolavogue
  • By Boolavogue · New reply May 5, 2015
  • Discussion in Medicare prescription drug benefit · 11 replies
  • I would like to draw your attention to the published results of a 7 year study on the use of ultra high dose Methylcobalamin injections in ALS patients.The study shows a dose related response to ultra ...

Can doctors really speak for us?

Juerita
  • By Juerita · Posted May 5, 2015
  • Discussion in National ALS Advocacy Day · 0 replies
  • From today's issue of BioWorld Today. ‘WE HAVE TO STAND UP FOR PATIENTS’ Cudkowicz also steered clear of the controversy in her presentation. But prominent ALS researcher Stanley Appel, chairman of neurology ...

What do you wish your doctor knew?

Brian
  • By Brian · New reply April 30, 2015
  • Journal · 663 replies · Photos
  • Dear members, Some of you have seen the story of the schoolteacher who asked students to anonymously finish the sentence, “I wish my teacher knew…” in an effort to get the children to share something ...

ALS related Webinars

ronlin
  • By ronlin · Posted April 29, 2015
  • Discussion in National ALS Advocacy Day · 0 replies
  • Go to www.alsconsortium.org Then scroll down and look under "News and Events". If you miss it, these webinars are posted on their website later. But if you catch it live you can post questions/comments ...

Feeding tube in the stomach

Brindvasi
  • By Brindvasi · New reply April 27, 2015
  • Journal · 3 replies
  • What are complications from this feeding tube and how does it make things easier. Any special type of feeding needed ...

ALS among National Guardsmen

Kimby500
  • By Kimby500 · New reply April 25, 2015
  • Discussion in ALS and the military · 2 replies
  • I am new to this site so this may have already been addressed. If so, I apologize. There was a Harvard study done a couple of years ago that addressed how people in the military have a 50-60% higher chance ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support The ALS Association

Help The ALS Association reach its goals and support people like yourself by making a donation today.

Donate to  The ALS Association

Discussion topics

Community leaders

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.