MDA/ALS Newsmagazine Vol. 14, No. 5

May 2009

Cover Story

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. — from a prayer by Reinhold Niebuhr There are few things that are certain in ALS, including what to do to ensure (or avoid) longer survival time. There are several...
The medical reason why some with ALS survive for years, even decades, is unknown. But long-term survivors — and their caregivers — have a lot to teach about ALS nonetheless.
The articles below, from four long-term survivors and two long-term caregivers, offer insights and advice about dealing with ALS — whether for the long haul or the short run. Although each journey with ALS is unique, these “old pros” agree that the secret of survival has as much to do with ways to...

Features

When it comes to being counted in the approximately 10 percent of people who live 10 or more years after an ALS diagnosis, there are no proven strategies and no guarantees. Maintaining the best, most satisfying life possible, however — a worthy goal in its own right — may increase the odds of being...
Factors in Survival: Age at diagnosis, diagnostic delay, fronto-temporal dementia, gender, genetic factors and modifiers, type of onset and rate of progression all play a role in length of survival. Factor Good or Bad? Notes Age at Diagnosis Generally, the younger the age of the individua...
When Kathy Hult of Eden Prairie, Minn., was matched with a Labrador retriever named Joy six years ago, it was love at first sight. “Joy just has been such a huge part of, not only my life, but my quality of life,” says Hult, 56, who received a diagnosis of limb-onset ALS in 1999. ALS trail blazer...
Alex Grausnick Bob Stimson Claudia Burrow Mark Rosen Phyllis Swenson A former lawyer who wrote his life story with his eyes. A retired Air Force general setting a new example of courage for his grandkids. A mom with two young children who still finds innovative ways to s...
On April 21, MDA launched its new social networking site, myMDA. With the goal of creating “strength in community,” the site provides an easy way to connect with other individuals and families coping with ALS in order to discuss health care, research, caregiving strategies, parenting questions and l...
Nancy O’Dell, longtime host of the entertainment-news show “Access Hollywood,” has accepted a new role as MDA National ALS Ambassador. O’Dell will spread awareness of MDA’s fight against ALS through media interviews, public appearances and public service announcements. For a second year, O’Dell will...

Research Roundup

Items in this article report on: causes of ALS, protective factors, familial ALS, sexuality survey, new book about ALS care Researchers probe protective strategies The idea that ALS may result from not just one, but a combination of factors, such as genetic variations and environmental...

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