I am fortunate to work in a world-renowned neurology department that provides care to thousands of patients with incurable conditions. We are deeply invested to find a cure for one of the most if not the most progressively debilitating/deadly diseases I've witnessed. ALS is sobering on paper and heartbreaking in person. Tuesday is typically a hard day for everyone in our department; we allocate the majority of our clinic to accommodate ALS patients, their families and the multidisciplinary team working to keep them alive as long as humanly possible.
Patients, families, caregivers, researchers and the physicians, hospitals and their staff providing care all need your support. You don't have to donate money if you don't have money, you can be supportive in other ways: volunteer, visit patients who have no other choice but to live in a nursing home because they need 24 hour physical care. These people with ALS lose their ability to walk, speak, swallow, but they're cognitively aware and still have feelings, emotions, opinions, even if they can't express it. If anything may come of this media craze is awareness and knowledge of these conditions and hope that medical advances and the difficult task of researching patients in various stages of the disease can ultimately spare so many suffering the most horrible last years, months, or weeks of their lives. This isn't limited to neurology or other terminal illnesses; education, kindness, and compassion is needed for "healthy" people too.
We know the biggest and baddest ice bucket challenge won't cure ALS, cancer, AIDS, poverty, or end wars. My hope is that all this attention seeking sends a bigger ripple of warmness to people's hearts and also put things into perspective for those who complain about having a bad day…..
Thursday, August 14, 2014
Saturday, July 13, 2013
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"#dontsteponthesteamingdivet"
(taken at Saratoga Polo Association)
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Thursday, June 27, 2013
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"Mail from my father is one of three possibilities: obscure "useful" information, concert tickets mailed to the wrong address, bootleg of last concert attended with father. #happybirthdaytome #theheavy #mydadrocks"
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Sunday, March 31, 2013
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Saturday, November 3, 2012
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Tuesday, October 30, 2012
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Monday, July 16, 2012
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