By Idelle Winer
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.
—Leonard Cohen, “Anthem”
Remember the exaltation of discovering a new musician or poet? In July 2009, my husband Brian had that experience after watching a DVD of Leonard Cohen’s Live in London concert. Brian enjoyed a variety of music genres, ranging from rock music to Broadway musicals, but did not listen to Leonard Cohen. After viewing the DVD, however, Brian became Cohen’s biggest fan—he dubbed it the “religion of Lenny.” Brian even took the DVD to the ICU when he had his feeding tube placed in August 2009, discussing the meaning behind many of Cohen’s lyrics with the hospital’s rabbi and ICU nurses. Brian was hooked, listening religiously until the end of his life.
Continue reading Ring the Bells
An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life. ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS. More than $950 million in federal funding has been generated for ALS-specific research since 1998.
Continue reading ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference
In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist). Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging. According to The National Rural Health Association here are just a few reasons why:
Continue reading Living with ALS in Rural America