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Sun., Oct. 4
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Massena Public Library holding presentation on Lou Gehrig’s Disease


MASSENA - Understanding Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig’s Disease, and how to deal with it will be the subject of a Jan. 24 presentation at the Massena Public Library.

Dr. Charles Robinson, founding director of Clarkson University’s Center of Rehabilitation Engineering, Science and Technology, will share his journey from teaching rehabilitation engineering in the classroom to personally applying techniques he created to care for his wife, an ALS patient.

The 6:30 p.m. program, which is titled “Caring for the Caregiver Through the Appropriate Use of Technology,” is hosted by the ALS Association, Upstate New York Chapter.

Dr. Robinson, a board member with the association, addresses the subject from a personal perspective, according to Library Assistant Deborah Fuehring.

She said his goal is to help maintain a reasonably good quality of life for the patient and caregivers during this difficult time. He will explore ways in which assistive technology can improve the quality of life for both the patient and the caregiver.

“He is an engineer. His wife died of ALS, Lou Gehrig’s Disease. Because of what happened with his wife, he got interested in teaching rehabilitation engineering to people. He kinds of sees it from many angles. He tries to help the patient and the caregiver because it’s a lot on them,” she said.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death.

Ms. Fuehring said she was approached by the ALS Association, Upstate New York Chapter, about having the presentation at the library.

“A lot of times it’s good to have something medical. We like to have different medical things and health things,” she said.

The topic will be of interest to persons with a progressive disability and their caregivers, engineering students, therapists, nurses and aides, Hospice personnel, ALS and MDA chapters, and social and church support groups. But, Ms. Fuehring said, it’s also for anyone who is interested in Lou Gehrig’s Disease.

“It’s an informational type of thing. It’s about what ALS is and what can be done. It gives a deeper understanding of exactly what ALS does and how it affects those surrounding a person with ALS,” she said.

In addition to Dr. Robinson’s presentation, ALS Association, Upstate New York Chapter Executive Director Kathy Lahey and Care Service Coordinator Kate Cavan will provide chapter program information designed to help patients, caretakers and families in the Northern New York area.

For more information, email or phone 1-866-499-7257.

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