CareNovate.com Cofounder, Dr Erowele Interviews Actor, Director, Producer, Open Arms Ambassador Henry Winkler Inspires caregivers & families - with open arms
Mr Henry Winkler is perhaps best known for his role as Fonzie on “Happy Days,” but he has also enjoyed a long career of producing and directing. Winkler formed his own production company and went on to produce the successful television series Ryan’s Four and MacGyver, as well as directing the film Memories of Me (1988). Currently, Henry appears on Winkler is appearing on the USA show “Royal Pains” and recently released a book titled, “I've Never Met an Idiot on the River: Reflections on Family, Fishing, and Photography.”
While here in the Texas Medical Center, Houston, TX, I had the awesome opportunity to chat with Mr. Winkler to talk about the Open Arms Campaign, ULS and his role as a caregiver. Mr. Winkler, thank you so much for talking with me. This is such an honor.
Thank you. Glad to talk with you.
About a decade ago, Henry was given a role for which he was uncharacteristically unprepared: that of a caregiver to his mother, who suffered a stroke. As a result, his mother developed upper limb spasticity (ULS), a debilitating condition that affects 1 million Americans following a stroke. She suffered for 10 years with the condition before she passed. At that time, there was limited awareness of ULS and available treatment options. Had there been greater awareness, Henry feels, his mother might have had a better outlook. He wants to encourage others to learn more about ULS and talk to a doctor about their options.
. Not a lot of folks know about ULS. Can you tell us about Open Arms Educational campaign and your involvement with it? I had a crash course with upper limb spasticity (ULS ) when my mother, had a stroke in ’89. She was later diagnosed with ULS. It is debilitating disease that affects the upper limb. You’ve seen a hand that is crumpled. An arm that is twisted and frozen against the body. A palm that is closed and the finger-nails are growing into the palm. It works on the ego because it’s unsightly. You are now unable to do everyday things like bottom your shirt or tie your shoes. They have pain and discomfort. I saw this with my mother. There are over a million patients suffering from ULS. There are therapies available to patients but they also have side effects that affect the body, brain, the whole system. Therapeutic Botox is now available but was not available when my mother was suffering. I’ve seen the results of this therapeutic use of Botox with my own eyes and it’s pretty incredible to me. It is a pleasure to go around and talk about this and just bring the information to caregivers, doctors and patients and let them decide together if it is right for them. You don’t get the use of your arm back—but it’s easier to live with. It’s less painful. It is easier for the caregiver to help you get dressed. ULS is severely under-recognized and under-treated, because it can occur weeks, months or even years after the person’s original injury – after discharge from the hospital or when patients are no longer seeing specialists familiar with and specifically trained to treat the condition. It’s crucial to have access to resources that can help you or your loved one recognizes the symptoms of upper limb spasticity, understand why the condition occurs, and, importantly, how it’s diagnosed and managed.
What has been the most challenging aspect of being a caregiver to your mom?
He is ambassador for the Open Arms Campaign supporting people living with upper limb spasticity (ULS), which affected his mother after her stroke in 1989. Henry has been a part of the Open Arms campaign since it launched in April 2010. To raise awareness about ULS, Henry has joined forces with nine national advocacy groups, including National Stroke Association, in the “Open Arms: Raising Awareness of Upper Limb Spasticity” educational campaign. As part of his work, Henry shares his family’s story with members of the public, including ULS patients and caregivers.
I consider myself a partial caregiver as I shared the responsibility with my sister. The most difficult part is watching and listen to my mother ask “why me”, “why isn’t my medications and therapies not working? It got to the point where she refused to enjoy simple activities because of the pain. It is also realizing that therapeutic Botox was not available to her. It was hard watching as her sunshine, her will to live, dripped out of her Stress is a major issue for family caregivers. What advice or tips would you offer a new caregiver, caring for a loved one with ULS? Self-care & self image is absolutely important. I really do. You can’t ignore yourself. You have to take care of yourselves. Caregivers are heros, these families are wonderful, strong but caregiving can be overwhelming and exhausting. They need an outlet. I love to tell all caregiver to make sure that their glass is half full so you can present that glass to the people you work with.
“…Caregivers are heroes, these families are wonderful, strong but caregiving can be overwhelming and exhausting. They need an outlet. I love to tell all caregiver to make sure that their glass is half full so you can present that glass to the people you work with.”
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