IN THE SPOTLIGHT
Through the past several years, we’ve received so many heartwarming, cogent, worthwhile emails from patients, caregivers, family and friends. The messages contained within those pages are relevant and important and should be read by many. They carry with them the sense of urgency, care and commitment to finding purpose as well as solace in the battle each of us faces as we struggle to find a cure for ALS. Perhaps just as important, the letters and stories reflect our efforts to live with dignity, respect and care within the confines of life with ALS.
‘In the Spotlight’ offers the writings of many who have contributed in the past and would like to offer their perspectives in the future. We invite each of you to participate in whatever way you choose and look forward to hearing from you.
LEONARD FLORENCE CENTER FOR LIVING, STEVE SALING ALS RESIDENCE
There is nothing like an in-person visit to bring highlights to the surface and provide greater understanding. The Leonard Florence Center in Chelsea, Massachusetts, is an incredible establishment that houses ten ALS patients in a home-like setting with superb around the clock care and attention. Maintaining as close to total independence as possible for every patient was a critical part of the concept and design, as implemented jointly by Steve Saling, the brilliant architect, engineer and IT specialist for whom the ALS Residences are appropriately named, and the Executive Director of the Center, Barry Berman, whose energy and patient-centric performance is almost unmatched in our view.
The entrance is a foyer, followed by a large living room, beautifully outfitted kitchen and dining room, all surrounded by individual bedrooms, decorated in styles that reflect the taste and needs of the person living there. There is absolutely no sense of a nursing home, institutional appearance, long corridors or patient isolation. Instead, there is camaraderie, comfort and elegant surroundings. For a closer look at what Steve Saling and Barry Berman have been able to create for Steve and nine other ALS patients and ten MS patients in the next wing, please view this brief video.
Not only is this center right for ALS and MS patients, it is a model for nursing homes everywhere, for any and all individuals who find themselves needing temporary or permanent health care. The Leonard Florence Center houses Medicare and Medicaid patients as well as those with financial resources. We urge you to support the Leonard Florence Center as expansion into more ALS residences is underway and needs financial support.
INSPIRING WORDS TO SAVOR
Tony Judt, well known historian, author and university professor, was a frequent contributor to the New York Review of Books and an ALS patient. We’re pleased to republish Night, his most insightful and moving essay published in January 2010 that captures the essence of ALS.
It begins:
“I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease. Motor neuron disorders are far from rare: Parkinson's disease, multiple sclerosis, and a variety of lesser diseases all come under that heading. What is distinctive about ALS—the least common of this family of neuro-muscular illnesses—is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration.”
Read the complete essay Night
Read the review of Tony’s new book “Ill Fares the Land.” by Tim Rutten of the Los Angeles Times.
