But after numerous doctor visits, muscle and reflex tests and an MRI, the then-32-year-old Barkan soon found himself sitting in his neurologist’s office with his wife Rachael King and listening to what he describes as his “death sentence.”
His physician informed Barkan that he had Amyotrophic lateral sclerosis, orALS, a neurological disease that causes the progressive paralysis of the muscles responsible for chewing food, speaking and walking — eventually leading to respiratory failure, often within five years. Barkan, it turned out, was the youngest patient the neurologist had ever diagnosed with the disease.
Ady Barkan with his son Carl.Peter Bohler
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Now Barkan — who depends on a ventilator to breathe and relies on 24-hour nursing care at his home in Santa Barbara — is focused on using his remaining strength to get more funding for public healthcare.
Ady Barkan being arrested at a protest in Washington, D.C. in 2017.
Barkan became a viral sensation in 2017 after the release of a video showing a chance encounter on an airplane. He asked former Arizona Sen. Jeff Flake to “be an American hero” and vote against a tax bill that he was convinced would restrict health care to people like him.
Shortly afterwards the Yale Law School grad — who credits home care with allowing him to live “a beautiful, full life” with his family instead of being alone in a nursing home — launched his"Be A Hero"campaign.
“Providing care for people we love isn’t a Republican issue or a Democratic issue,” says Barkan. “It’s an American issue and a moral one to ensure that everyone gets to live safely, with dignity and respect.”
Barkan’sadvocacy workfor healthcare reform — which has involved several arrests at the U.S. Capitol, along with a six-week, 22-state road trip in his wheelchair before the 2018 midterms — is the subject the recently released documentaryNot Going Quietly.
“I want to leave behind a legacy that inspires at least a couple of new people to get involved and be part of our political process,” says Barkan. “The cure for what ails American democracy is more American democracy.”
source: people.com
