Researchers at Northwestern University say they have discovered a common cause behind the mysterious and deadly affliction of amyotrophic lateral sclerosis, or Lou Gehrig’s disease, that could open the door to an effective treatment.
DUDLEY CLENDINEN, a former national correspondent and editorial writer for The Times, and author of “A Place Called Canterbury” talks about living with ALS or “Lou” as he calls it in honor of Lou Gehrig, the great Yankee hitter and first baseman who was told he had it in 1939, accepted the verdict with such famous grace, and died less than two years later. He was almost 38. He also says calling it “Lou” in his honor gives it familiarity that makes it fell less threatening.
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On January 24, 2011, 63 participants gathered in New York City for the International Consortium of Stem Cell Network (ICSCN) Workshop Towards Clinical Trials Using Stem Cells for Amyotrophic Lateral Sclerosis (ALS)/Motor Neuron Disease (MND).
Dr. Rick Bedlack of Duke University and ALS Untangled moderated a panel discussion comprised of Stephen Byer of ALS Worldwide and Dr. Brian Dickie of the Motor Neuron Disease Association, an extract of which can be read at ALS Worldwide: Breaking News.
[John Carroll, FierceBiomarkers] A Boston neurologist has won a $1 million prize after identifying a new biomarker for amyotrophic lateral sclerosis and developing a simple gadget that can help researchers track the progression of the disease.
Dr. Seward Rutkove of Beth Israel Deaconess Medical Center observed that as the muscles of ALS patients deteriorate, they are less capable of transmitting small electrical currents in the body. As the disease progresses, electrical impedance grows. And further animal research demonstrated that investigators could use Rutkove’s device for tracking the condition as they monitored disease progression in patients.
Claudia Dreyfus of the new York Times (May 9, 2011) interviews Stephen Hawking. She writes: “Like Einstein, he is as famous for his story as for his science. At the age of 21, the British physicist Stephen Hawking was found to have amyotrophic lateral sclerosis,” or ALS, a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. ALS is also known as Lou Gehrig’s disease. “While A.L.S. is usually fatal within five years, Dr. Hawking lived on and flourished, producing some of the most important cosmological research of his time. In the 1960s, with Sir Roger Penrose, he used mathematics to explicate the properties of black holes. In 1973, he applied Einstein’s general theory of relativity to the principles of quantum mechanics. And he showed that black holes were not completely black but could leak radiation and eventually explode and disappear, a finding that is still reverberating through physics and cosmology.”
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What makes physical care so challenging in advanced ALS is the absence of other indicators of change — the verbal and physical response to care. The physical changes are much more subtle, and the nurse is more likely to detect changes when there is a connection with the patient that allows a rhythm to unfold. Daily inspections included in the assessment are crucial if potential problems are to be avoided. Particular challenges of patients with ALS who are locked-in follow. It is important to provide a blueprint for supplies in establishing and maintaining a safe home care environment.