ALS Advocacy Support Community

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

Keeping Hydrated During Hot Summers

By Duvie · New reply 6:50 pm
Journal · 11 replies
We all have to realize that it is more difficult for many patients to stay hydrated during warmer or hotter days. Many patients have a caregiver to help. Caregivers, such as Jo & I, need to be aware of ...

Deanna's Protocol

By JCase · New reply 6:38 pm
Discussion in Children and families · 211 replies
My Dad was recently diagnosed with ALS. It is sporadic and not familial and started with twitching and weakness in the legs. In July of this year, he started falling, in August he could only walk about ...

Any Trach Patients or Caregivers?

By Duvie · New reply 3:24 pm
Journal · 6 replies
Duvie has a feeding tube and a trach, since Oct 8, 2009. Seems I'm always giving advice on feeding tube problems, but never talk about trach issues. Duvie doesn't care for most respirtory nurses to suction ...

Rilutek news

By Sacramento · New reply 2:28 am
Discussion in Children and families · 8 replies
Aceto to launch generic for ALS treatment Aceto Corporation, Port Washington, N.Y., announced June 11 that its generics subsidiary, Rising Pharmaceuticals Inc., Paramus, N.J., will launch the 50-mg strength ...

Cytokinetics, Inc. Annual Shareholder Meeting

By edjnc · New reply yesterday at 7:04 pm
Discussion in Children and families · 1 reply
Attend this meeting to Call for early access, Accelerated approval, or breakthrough designation. Only one ALS family member attended last year. Very few people attend because there are so few shareholders ...

Five million

By Brian · New reply June 17, 2013
Journal · 243 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Diaphragm Pacing Device

By rgmcstewart · New reply June 17, 2013
Discussion in ALS and the military · 6 replies
I saw an article recently on a device that assists ALS patients with breathing issues. It is called a 'diaphragm pacing device' and works much like a cardiac pace maker. As one who struggles with breathing ...

ALS Resolved

By LMichelle · New reply June 16, 2013
Discussion in Familial ALS · 6 replies
And to follow up I was walking on my own...yes out of the wheelchair, off of the walker and just barely (and I mean barely .. I had become so depressed) trying, with help of therapist to get used to life ...

Cytokinectics CK-2017357 Phase II Trial

By amkub · New reply June 14, 2013
Journal · 6 replies
This is our 1st opportunity to consider a drug trial for my husband. We just received the protocol and he seems to be a good participant for this trial. This may be a native question, but is there ever ...

Ask us about this: Propofol

By edjnc · New reply June 13, 2013
Discussion in Children and families · 20 replies
Re posting: "Specific Improvements For Me: Improvement in right sided swallowing. Can eat and drink currently without coughing every single time I do either (which was the case before my biopsy). Also ...

Diagnosis Journey

By Steve99 · New reply June 12, 2013
Discussion in Children and families · 17 replies
Hey everyone, Well, we talked to our neurologist today who had diagnosed my wife with probable ALS and asked about getting a diagnosis of definite so that we can access our VA benefits and get referrals ...

Please consider sending your version of this snail mail to your Congress pe

By edjnc · New reply June 9, 2013
Discussion in Children and families · 3 replies
Please consider sending your version of this snail mail to your Congress people. This is ALS month. We all need to become more like the HIV activists. if possible use personal stationary, tell us if you ...

Peg Tube

By NannetteRC · New reply June 8, 2013
Discussion in Children and families · 6 replies
Does anyone have positive things to say about the peg tube? I need to get one soon and so far I have not heard much that is positive. I am not excited about this at all. Thank you ...

Out Foxing the Fox (meds clog)

By Duvie · New reply May 31, 2013
Journal · 6 replies
Hello Everyone, After the second consecutive day with tube clog from Nexium, I decided to out fox the villian (Nexium) instead of reaching for my DeClogger. Three days ago I placed a zip-tie stabilizing ...

ROUND #1 with a DeClogger

By Duvie · New reply May 30, 2013
Journal · 4 replies
Hello Everyone, Just had my first battle with the screw part of a DeClogger breaking off in the feeding tube. It was difficult and took me an hour to gradually maneuver the tip back up through the tube ...

coconut oil for ALS

By mumucu · New reply May 29, 2013
Journal · 17 replies
Are there someone insisting on using coconut oil for ALS treatment for a while? What's your current situation? My mom was diagnosed ALS last year and I want to try coconut oil if it works. If it works ...

Corrected list of known patients who reported significant improvements afte

By edjnc · Posted May 27, 2013
Discussion in Children and families · 0 replies
http://www.als.net/forum/yaf_postsm36441 4_Is-Propofol-the-Cure-for-ALS.aspx#3644 14 ...

Precision StemCell

By edjnc · New reply May 21, 2013
Discussion in Children and families · 30 replies
Quote from a recent patient email. We hope that comments such as this one will be posted on PLM as well as a new Patient Managed Google group site which will contain more in-depth information and discussion ...

FDA suggests guidelines for expanded access

By Sacramento · Posted May 21, 2013
Discussion in Children and families · 0 replies
The FDA has released draft guidelines on how it intends to regulate expanded access to experimental drugs. The guidance on investigational new drug applications is in Q/A format; feedback is due by July ...

Propofol and ALS, arranged a meeting with an anesthesiologist

By edjnc · New reply May 20, 2013
Discussion in Children and families · 6 replies
Dr. W is actively pursuing this subject. He is Keeping three of us updated on progress. please read below and send me the information (EdJohnson@alumni.duke.edu) he has requested. Or you can join and ...

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