volunteers

I have spoken many times of what a wonderful man my PALS is. Today our small town came together to in support of my PALS. Here is the story that was written by one of his friends that writes for the local newspaper. The young people who were serving were a wonderful show of humanity as was all...

Has anyone heard of or used Lotsahelpinghands.com? It was suggested to be by an RN that volunteers to help PALS and CALS. She is a wonderful resource. I am hoping this website will be as well. My best friend is going to coordinate resources by emailing when we have added things Cliff and I...

Link: I Owe You a Yo-Yo Today | ALS.net I did this yesterday and it was quick and easy and unobtrusive. They just ask gender, age, whether you have ALS dx... then you repeat the phrase five times. Thanks if you can participate. And if you are able, please spread the word.

While not conducted in ALS, this small study of healthy volunteers, complemented by work in some of the other dz states mentioned below, suggests that early BiPAP might help protect neurons. BDNF administration was tried and failed in ALS, but seemingly for reasons more related to the...

I copied this from a post in another group PLS study, at Mass General in Boston, Dr. Paganoni recently received the Virginia Sweeney Fellowship to study PLS from the Spastic Paraplegia Foundation. MGH is one of a few facilities in the world to do a combined MRI-PET scan. They have been doing...

The one bright spot for me in this hell of a disease has been my family. I was working out of town when I was diagnosed. My wife and daughter came up and spent a week packing and moving my things sine I was too weak to do it. My wife takes care of me and also runs a business- sort of like...

I can't help but feeling guilty - massively so. We were so late in finding the diagnosis - even after 3 neurologist. It progressed so fast and I was blinded to anything serious. As it progressed quickly I was foiled at every turn: Took time to get certain meds, time to get a peg tube, time to...

Wifey was sick today, so I had to drive the 20 minutes to VA to be fitted for computer viewing glasses, and pulmo. Volunteers pushed me from free valet parking to appt. I finally got to see a good doc at the pulmo clinic today. He asked me if I wanted a trach. I said I'm strongly considering...

I have just joined this forum and having reading some entries i know that I'll get some good advice on some pressing issues. Background My 84 year old mother who lives in Montreal is awaiting her formal diagnosis of Bulbar ALS. Symptoms started in March and her voice and speech and breathing...

Hi everyone, I've been reading some of the posts here and can relate to the frustrations with this disease. On one hand we are lucky we don't have ALS but we have a longer life to live with poor quality and lack of independence. On top of that we are at the bottom for any clinical trials. I read...