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I don't even for one glance

sullivtny69
  • By sullivtny69 · Posted 1:15 am
  • Discussion in National ALS Advocacy Day · 0 replies
  • I don't even for one glance all the symptoms because I'm where he'll those the lower back a colossal with are Mr. the CBO by you don't believe in things done in that makes it home here me very oldest ...

spasticity

Mammarika
  • By Mammarika · New reply yesterday at 5:13 pm
  • Discussion in Familial ALS · 15 replies
  • Hi My problem in night is that suddenly my legs and yaw start to get spastic. It's complete impossible to relax and I dont get much sleep when it happens. Anyone else? Is there a solution to this problem ...

Itching at the area of atrophy

mynamegoeshere
  • By mynamegoeshere · Posted yesterday at 2:26 pm
  • Discussion in National ALS Advocacy Day · 0 replies
  • Did anyone with ALS notice itching at the area of atrophy. Like at the hands near base of thumb , or on the calf muscle area, or on top feet just above the bones. It is a drive ya nuts kind of itch where ...

Help - leg & foot issues

newfie123
  • By newfie123 · New reply yesterday at 11:47 am
  • Discussion in Familial ALS · 7 replies
  • My husband has been diagnosed with Als - he is having pain behind the left knee when he walks - his foot is sometimes cold, and sometime red almost purple and hot . - Is this a symptom of ALS or could ...

LDN Low Dose Naltrexone

Mammarika
  • By Mammarika · Posted April 17, 2015
  • Discussion in Familial ALS · 0 replies
  • Hi Does anyone have good experiences of LDN? http://www.lowdosenaltrexone.org/index.h tm#What_is_low_dose_naltrexone Love ...

cannabis oil for treating als

maidazekiri
  • By maidazekiri · New reply April 16, 2015
  • Discussion in Children and families · 8 replies
  • Hello, I am new to the community here and I would like to know more about the effects of cannabis on patients with als my dad has been diagnosed with this terrible disease not to long ago and I would ...

GM604

sdmajohnny
  • By sdmajohnny · New reply April 16, 2015
  • Discussion in Medicare prescription drug benefit · 19 replies
  • Please signed the petition on change.org to approve GM 604 proof for accelerated approval by theFDA for use by ALS patients. GM 604 has been proven to be safe and has shown surprising results against ...

Gm604 and the right to try!

Afulg
  • By Afulg · New reply April 15, 2015
  • Discussion in Children and families · 2 replies
  • Our family created this video to show that with the love and support of family family, we still have hope. http://ellentube.com/videos/1_71rpj16z ...

May 11 - ALS Rally for Faster Drug Approval

Juerita
  • By Juerita · New reply April 14, 2015
  • Discussion in National ALS Advocacy Day · 1 reply · Photos
  • Please join other PALS, families, and friends for our second rally in Washington on May 11. This time we are a new organization: Hope NOW for ALS! Our mission is to push ALL promising drugs through the ...

May 11 Washington D.C. - ALS RALLY

Juerita
  • By Juerita · Posted April 13, 2015
  • Discussion in ALS and the military · 0 replies
  • Please join other PALS, families, and friends for our second rally in Washington on May 11. This time we are a new organization: "Hope NOW for ALS!" Our mission is to push ALL promising drugs through ...

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

dhuntley
  • By dhuntley · New reply April 13, 2015
  • Discussion in National ALS Advocacy Day · 49 replies · Photos
  • 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 ...

GM604 Accelerated Approval Petition Link to the White House

JGPfromPA
  • By JGPfromPA · New reply April 13, 2015
  • Discussion in National ALS Advocacy Day · 10 replies · Photos
  • In addition to the Change.org petition, that appeals to the FDA, we are also petitioning the Obama Administration for a response. The White House petition link is: http://wh.gov/iWMcT To receive a response ...

Diaphragm Pacing System (DPS)

ronlin
  • By ronlin · New reply April 13, 2015
  • Discussion in National ALS Advocacy Day · 86 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 ...

What are my odds of getting ALS if my uncle and my brother have ALS?

Goz74
  • By Goz74 · New reply April 13, 2015
  • Discussion in Familial ALS · 2 replies
  • My uncle (mom's side) died 5years ago from ALS he had the genetic testing done and tested negative. My brother was just recently diagnosed at 47 so we are starting to think it is familial. What are the ...

spring

greensmile
  • By greensmile · Posted April 8, 2015
  • Journal · 0 replies
  • spring is upon us flowers blooming lovely faces seeking velvet rays renewel stretching of limbs opening eyes and ears seeing freshened beauty hearing crisp birdsongs new growth green blades of grass fluffy ...

ENFit Connections With Only One Hand

Duvie
  • By Duvie · New reply April 7, 2015
  • Journal · 26 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 ...

Hope NOW for ALS!

Juerita
  • By Juerita · Posted April 5, 2015
  • Discussion in National ALS Advocacy Day · 0 replies
  • Please support 31 year old navy veteran and PALS Matt Bellina and his young family @ https://www.change.org/ALSMedication6 And join us in Washington May 11 for the next rally: "Faster Drug Approval for ...

Newly Diagnosed PBP

christie98
  • By christie98 · New reply April 3, 2015
  • Discussion in Familial ALS · 14 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 ...

Patient Education Through Cell Phone Videos

Duvie
  • By Duvie · New reply March 29, 2015
  • Journal · 56 replies
  • I've mentioned before about videos for patient education possibly being provided by hospitals or insurance companies that patients could take home to review when needed. This would result in better and ...

FDA now reviewing new drug

Juerita
  • By Juerita · New reply March 28, 2015
  • Discussion in ALS and the military · 5 replies
  • 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 ...

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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.