In the 10 years after his mother’s stroke in 1989, Henry Winkler saw her gradually lose her independence because of muscle spasms that left her arms increasingly immobilized.
“It whittled away her self-esteem,” Winkler said. “There’s the idea of the stroke and not really being able to change it, and then the upper limb spasticity takes over, and you think, I am really off the deep end here.”
The actor, best known as “Fonzie” on classic TV show “Happy Days,” comes to Raleigh on Tuesday to share his family’s story and raise awareness of treatment options for upper limb spasticity, commonly referred to as ULS. Winkler will speak at WakeMed Rehabilitation Hospital and at UNC Health Care’s The Friday Center in Chapel Hill to sold-out crowds.
It’s part of the Open Arms Campaign, formed by national advocacy groups including the National Stroke Association and Allergan, the makers of Botox.
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ULS is a painful and underreported neurological condition that causes the muscles of the elbow, wrist and fingers to seize up, leading to difficulty performing daily tasks. The condition affects about 1 million Americans, including 58 percent of stroke survivors, according to the National Stroke Association. Usually treated with physical and occupational therapy and medication, ULS is now also addressed with the use of Botox injections, approved by the FDA two years ago.
Botox is known for immobilizing facial muscles to reduce the appearance of wrinkles, but when used to treat ULS, it scales down the accelerated muscle spasms to normal muscle function. Other drugs deliver the same type of chemical, said Patrick O’Brien, medical director for WakeMed Rehabilitation Services, but so far Botox is the only brand approved by the FDA to treat ULS. The injections take place after physical therapy and medication have been ineffective, O’Brien said.
Winkler thinks the treatment could have improved his mother’s post-stroke quality of life. She tried both medication and physical therapy, he said, but neither was effective. His mother passed away in 1999.
“I saw the joy drip out of her body, and I saw the will drip out of her body,” Winkler said. “(The medications) affect other muscles in your body, so now you’re tired, you have no energy, no get up and go to try to make your life better.”
Winkler encourages ULS patients and caregivers to ask their doctors about treatment options, and to pass the information along to help spread awareness.
And O’Brien said he and his patients are excited to meet Winkler – an added bonus.
“It’s The Fonz!” O’Brien said.