Henry Winkler may be best known for his role as “Fonzie” in the 1970s hit sitcom Happy Days, but the past few years he has taken on a new role as the voice of the Open Arms Campaign (www.OpenArmsCampaign.com).
Winkler has been traveling to hospitals around the country speaking to patients and caregivers about upper limb spasticity (ULS). While ULS is a little-known disease, it affects 58 percent of stroke survivors.
Upper limb spasticity is a deeply personal condition to Winkler because his mom suffered from it for 10 years before she passed.
“I watched the thrill of life- the joy- just drip out of her body,” he said of watching his mom live with the condition.
During the time his mother lived with ULS, Winkler stepped in as her caregiver. He feels had there been greater awareness, his mother would have had a better chance to fight the condition.
Winkler took initiative to raise awareness about ULS, and joined forces with eight national advocacy groups, including the Open Arms Campaign. “It is my pleasure to go across the country and talk to people so they have this information,” he said.
Winkler visited the Barrow Neurological Institute in Phoenix on Feb. 29, 2012, and spoke to patients and caregivers alongside Dr. Christina Kwasnica.
Kwasnica, who serves as the medical director of neurological-rehabilitation at the Barrow Institute, spoke to patients about the symptoms and treatment options of ULS. She described ULS as “excessive activity in the muscles” and said it “causes muscles to be stiff and tight.”
Kwasnica suggested patients suffering from ULS build up a team to help them start the rehabilitation process. “You can’t do this rehabilitation without help through all of the stages,” she said.
Botox therapy has become one of the most common treatment options for ULS, according to Kwasnica. She said she sees miracles everyday because of the treatment.
One of these miracles is Kwasnica’s patient Brent Bartell, who has received numerous Botox treatments since starting rehabilitation after a motorcycle accident in 2003. Kwasnica said Bartell started Botox with the goal of being able to get his right arm into a shirtsleeve, but he now has nearly full functionality in his arm.
Bartell’s caregiver Leanne Peltzer, who also attended Winkler’s visit to the Barrow Institute, said Winkler “provided a lot of encouragement” and that she “liked his techniques.” Bartell nodded in agreement and Peltzer said he had been looking forward to seeing Winkler for quite some time.
Winkler said events like the one at the Barrow Institute where “someone says they can live their life” stick with him. He interacted with patients, taking pictures, shaking hands and even hugging some of them.
Winkler said he wished he and his mother had known about Botox and what it was able to do at the time she was suffering from ULS. “There is a new tool in the doctor’s toolbox that has very little downside and enormous potential,” he said of Botox.
Winkler said he also knows what it’s like to suffer from a disorder, as he has dealt with dyslexia his entire life.
“What I have found is we all have handicaps- we all have challenges,” he said.
Winkler has written 17 children’s novels about his life growing up with dyslexia. He is most proud of his books; especially one he just released titled “Ghost Buddy.”
“If you put yourself out on the line, there’s no reason you can’t reach your dream,” he said of writing books with dyslexia.
Winkler has been working alongside the Open Arms Campaign since April 2010 and plans to continue doing so to raise awareness of upper limb spasticity.
Edited by Jody Smith