living with

Finding a way to focus on the positive — even in the face of ALS

Posted on Wednesday, December 11, 2013 - 16:15, By: Freelance
Many of us have mixed emotions during the holidays. I can remember as a child and young adult mostly enjoying the festivities, holidays and celebrations during this time of year. It wasn't until I was married with a family to support that the holidays began to lose their luster.

The author, who has ALS, explains what's new in BCI technology

Posted on Wednesday, November 6, 2013 - 09:35, By: Freelance
Brain-Computer Interfaces (BCIs) enable a person with no voluntary movement to communicate, surf the Web, write emails, and even move a wheelchair. For people with advanced ALS, spinal cord injuries, stroke or other neuromuscular conditions, BCIs promise to give them back the world. There are no...

Actor turned advocate Martin Treat is keeping a positive outlook on life — with ALS

Posted on Tuesday, September 3, 2013 - 09:00, By: Richard Senti
When you look at Martin Treat’s headshot from his acting days, you swear you’ve seen him before. His is a classic tough-guy face — square-jawed with ample wavy hair. If you were a casting director, you might give him the nod in a film noir as a gruff, wise-cracking police detective, or maybe a...

AAC specialist describes practical low-tech strategies that are part of a complete communication system for people with ALS and their loved ones

Posted on Thursday, August 1, 2013 - 09:30, By: Freelance
My name is Craig, and I would like to share a story that may help many people who struggle to communicate. The first part of this article is about my personal experience helping an old friend who has ALS. The second part is information from Margaret Cotts, an assistive technology specialist with...

ALS researcher Adriano Chiò discusses what’s been learned about why ALS hurts

Posted on Monday, July 1, 2013 - 09:00, By: Amy Madsen
It used to be said that pain isn't associated with amyotrophic lateral sclerosis (ALS). Used to. Although typically not considered a primary consequence of ALS, researchers and clinicians are realizing that pain does play a role for people with the disease. In fact, in a pair of recent studies...

Don’t tough it out — addressing pain symptoms improves quality of life, says an ALS nurse

Posted on Monday, July 1, 2013 - 09:00, By: Amy Madsen
Pain in ALS is very personalized, says "The ALS Nurse," Mary Beth Geise. "If you're experiencing it, don't ignore it — follow your feelings and seek help."

Ramps are expensive but worth it for the independence and safety they provide, says a man who details his experiences with having a ramp built for his wife

Posted on Monday, June 3, 2013 - 14:15, By: Freelance
When my wife got her TiLite manual wheelchair, it opened up a world of freedom for her. Her back pain was gone, along with her risk of falling, and she could move longer distances. Suddenly, she could again move across the shopping mall, maneuver around the house and perform at her job. While the...