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Newly Diagnosed PBP

christie98
  • By christie98 · New reply yesterday at 3:29 pm
  • Discussion in Familial ALS · 8 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 ...

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

dhuntley
  • By dhuntley · New reply yesterday at 11:21 am
  • Discussion in National ALS Advocacy Day · 47 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 ...

cannabis oil for treating als

maidazekiri
  • By maidazekiri · New reply March 30, 2015
  • Discussion in Children and families · 2 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 ...

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 ...

Simplesa and Riluzole

pother
  • By pother · New reply March 28, 2015
  • Journal · 5 replies
  • I have been taking Simplesa since beginning of February along with the extra AAKG to get the 18 mg a day. Also, PQQ to help with energy level, Oxaloacetate to help neutralize cellular glutamate and Micronized ...

Right to Try vs. Accelerated Approval

Juerita
  • By Juerita · New reply March 28, 2015
  • Discussion in National ALS Advocacy Day · 10 replies
  • Many states are passing Right to Try laws which offer another potenteial pathway to quicker access to investigational drugs. Personally, I would like to see a requirement for patient monitoring in these ...

ALS Patients Rally in Washington!

Juerita
  • By Juerita · New reply March 28, 2015
  • Discussion in National ALS Advocacy Day · 1 reply · Photos
  • The ALS patient community held their first "Faster Drug Approval" rally yesterday urging the FDA to apply their own "Accelerated Approval Program" to promising ALS treatments. We are pushing for GM604 ...

ALS Rally in Washington, Wed. March 25

Juerita
  • By Juerita · New reply March 28, 2015
  • Discussion in ALS and the military · 6 replies · Photos
  • PALS, families, and friends are gathering in Washington Wednesday, March 25 to advocate for Faster Drug Approvals. The FDA already has an application for "accelerated approval" for GM604 which demonstrated ...

repetitive weakness

mynamegoeshere
  • By mynamegoeshere · Posted March 27, 2015
  • Journal · 0 replies
  • In reading people's "my story" articles on PALS I notice a common early observation. ... while giving a speech it sounded as if I was drunk.. ...out for my normal jog and noticed my left foot felt funny ...

Mouth Problems

Valerie19
  • By Valerie19 · New reply March 27, 2015
  • Discussion in National ALS Advocacy Day · 24 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 ...

ALS Testing for children???

Clarkshill
  • By Clarkshill · New reply March 25, 2015
  • Discussion in Familial ALS · 4 replies
  • My husband passed away due to ALS - should my children get tested for this and where would they go to talk to about this ...

Update: Guestbooks

TeamInspire
  • By TeamInspire · Posted March 24, 2015
  • Journal · 0 replies
  • Hello, We are constantly working to improve Inspire by adding features that members find useful and retiring those that members do not. To that end, we have retired the guestbook feature. We understand ...

Feeding tubes

seattlelori
  • By seattlelori · New reply March 23, 2015
  • Discussion in Familial ALS · 33 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 ...

ALS Rally in Washington Wed March 25

Juerita
  • By Juerita · Posted March 23, 2015
  • Discussion in National ALS Advocacy Day · 0 replies · Photos
  • PALS, families, and friends are gathering in Washington Wednesday, March 25 to advocate for Faster Drug Approvals. The FDA already has an application for "accelerated approval" for GM604 which demonstrated ...

Food

Chambers123
  • By Chambers123 · New reply March 23, 2015
  • Discussion in Familial ALS · 1 reply
  • Hi, my mom has trouble swallowing and talking.mmshe was diagnosed in sept 2013. She is still able to eat however I have to cut meat very small. I was hoping someone out here had some good recipes for ...

Sissy passed away on 3/5 from ALS

Concerned2466
  • By Concerned2466 · New reply March 23, 2015
  • Journal · 1 reply · Photos
  • Sissy passed away on 3/5/15 from ALS. She was an RN and donated her body to research. She is the 10th or 11th one in our mother's family to have this disease ...

Breaking news - Swallowing Expansion Device

Duvie
  • By Duvie · New reply March 22, 2015
  • Journal · 19 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 ...

Exercises for the Deanna protocol

Paddym
  • By Paddym · New reply March 21, 2015
  • Discussion in Familial ALS · 6 replies
  • Good day people, I am positive about the benefits of the DP,but concerned about the warnings associated with "over-exercising" Can someone please help me with an appropriate daily exercise routine . Thank ...

What trigged your ALS?

Mammarika
  • By Mammarika · New reply March 21, 2015
  • Discussion in Familial ALS · 12 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 ...

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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.