Showing 4181 results for "als"

Coming Unstuck and Reaching Beyond Ourselves

Before my husband, Todd, got ALS, we had minor problems, but we were full of hope. We had a small baby so I wasn’t getting much sleep, but I knew that things would get better. Todd was sometimes frustrated with his work, but he hoped to be promoted. Our obstacles…

Envisioning a Bright Future for Our Survivors

From time to time, a comment in response to one of my columns reveals that the commenter has lost someone to ALS. The first time it happened, I paid it little mind. Subsequent occurrences aroused my curiosity as to why a survivor would continue to thoughtfully remain current…

Celebrating My Public and Personal Milestones

In last week’s column, I wrote about a gala banquet that I recently attended. As the event approached, I worried about what I would wear and how others would react to my mobility scooter. But my greatest concern was that I was one of the evening’s honorees. The…

The View From (Down) Here

Like many who live with ALS symptoms, I rely on a rollator. But when out and about and covering longer distances, I use a mobility scooter. My scooter is perfect, and I feel comfortable and confident going almost anywhere with it. Recently I crossed that almost off the list.

Breathing Difficulties

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative condition characterized by progressive muscle weakness and wasting. In some cases, breathing difficulties are among the first symptoms of ALS, as the chest muscles and diaphragm that control breathing become affected by the disease. In other patients, breathing difficulties may only…

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

Showing Up with Carpe Diem Intent

A week ago last Sunday, I spent a portion of the day, as I often do, going to church. Well, not quite “going.” Owing to the challenges of readying and transporting me, I participate in worship via a livestream of the service. The…