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Mom’s Struggle Inspires Actor to Spread the Word About Treatment
By Catherine Gray Beuten, Managing Editor
Henry Winkler, actor, director, author and philanthropist, has turned his energy toward a cause that hits close to home: stroke awareness. Winkler, perhaps best known for his roles as the Fonz on Happy Days, Barry Zuckerhorn in Arrested Development and most recently as the wayward father in Royal Pains, also played the real-life role of caregiver, supporting and assisting his mother.
“My mom had a stroke in about 1987 and she lived with the results of that stroke for 10 or 11 years,” Winkler explains. “My mom taught me compassion; sometimes you look at people who are different and the human being doesn’t immediately embrace difference.”
Ilse Anna Maria Winkler’s challenges after stroke included walking difficulties, upper limb spasticity and limited use of her left side. Despite extensive therapy, she achieved only minimal recovery before her death in 1999. “Rehabilitation was hard. It was difficult watching her struggle; trying so hard to get on top of it and never being able to,” he says. “She was a very active human being and I watched as she lost the joy and the will.”
While it was painful for him to watch his mother battle the effects of stroke, Winkler recognized that the emotional and physical pain was far worse for his mother and many stroke survivors. “What I saw — and I didn’t then realize it was so prevalent — was the embarrassment. The embarrassment of upper limb spasticity, the embarrassment of the plastic cone that kept your leg straight, the wheelchair . . . all of a sudden just not being able to present yourself the way you had up until that moment,” he says. “Sometimes you push yourself as hard as you possibly can and it’s disheartening because you don’t see results as quickly as you imagined it should be.”
Therapies for Spasticity
There are more than 6 million stroke survivors in the United States. Many of those survivors suffer from spasticity, the involuntary contraction of one or more muscle groups as a result of damage to the brain. In fact, estimates show that about 1 million Americans have spasticity. The spasms can be painful and constant and often effect the arms, wrists, hands and fingers. Doctors often prescribe a combination of therapies and are the best resource for a treatment plan to meet a patient’s specific needs. There are multiple treatments for spasticity including physical and occupational exercise therapies, muscle relaxants, surgery and botulinum toxin injections, including Botox®, which was recently approved by the FDA specifically to treat upper limb spasticity – the condition that Winkler’s mother suffered from.
Because he had witnessed his mother’s struggle, Winkler researched the newly approved therapy and became involved in the Open Arms Campaign, openarmscampaign.com, to educate people with upper limb spasticity about the treatment options available. He visited several patients of all ages who had suffered stroke and he was inspired by their courage.
“Having lived on the Earth for awhile I am always amazed by the triumphant soul, the spirit of the human being. Seeing the resilience of all the people that we met – and they represent hundreds of thousands of people – is humbling. It is a lesson to shut up, put your head down and live the best we can,” Winkler says. “The time I spent learning and meeting people made my head spin at least 370 degrees. You see the humor, the strength of the mind over anything.”
Staying Active; Giving Back
Winkler remembers his mother as a strong, noble woman who, with her husband Harry Irving Winkler, escaped Nazi Germany in 1939 and settled in New York City. “They were active in their religious community, they were active in their social community, they were active in my father’s business community,” he explains. The elder Winkler imported and exported lumber, a business he brought with him from Nazi Germany.
The cause of his mother’s stroke remains a mystery: Stroke does not run in the Winkler family. The family, which includes his older sister Beatrice, is not aware of Ilse Anna Maria Winkler having any risk factors, such as high cholesterol or high blood pressure. And at age 64, Winkler himself is the picture of health. “I have low blood pressure. I just had a stress test and was given a pretty good bill of health,” he says. “Really, that is helpful, but you just don’t know where your body is going. So many people who eat right and exercise right are still hit by fate.”
Like his parents before him, Winkler has been active in his community. A father to three children, Winkler and his wife Stacey Weitzman have been involved with children’s charities for decades. They are involved with the annual Cerebral Palsy Telethon, the Epilepsy Foundation of America, the annual Toys for Tots campaign, the National Committee for Arts for the Handicapped and the Special Olympics. They co-founded the Children’s Action Network (CAN) in 1990, which provides free immunization to more than 200,000 children each year.
Winkler also wrote a series of children’s books loosely based on his own childhood experiences with dyslexia. The final book in the Hank Zipzer: The Mostly True Confessions of the World’s Best Under-Achiever series was published in April 2010. “We’re very proud of the series,” he says. “Publishing the final book, the 17th in the series, was very emotional.”
And now Winkler has added a new passion, a new mission to his long list of philanthropic endeavors. “I will absolutely continue working in stroke awareness,” he stresses. “What I have learned in my life is stay on one thing you want the general public to know. In this case, stroke awareness.” While the Open Arms Campaign deals with upper limb spasticity and therapies that can help, Winkler recognizes the importance of overarching stroke prevention, awareness and expansive treatment options available for everybody. “It is important for people to know this is another tool in your box that can give you back hope; a more active life.”
A mix of therapies is often used to treat spasticity. It’s important to note that all therapies and drugs have potential risks and side effects. Be sure to weigh the risks and side effects against the benefits. Consult with your doctor about the best treatment options for your needs.
- Full range-of-motion exercises at least three times a day.
- Gentle stretching of tighter muscles.
- Frequent repositioning of body parts.
Medications can treat effects:
- Tizanidine (Zanaflex Capsules™)temporarily reduces spasticity by blocking nerve impulses. Tizanidine has been shown to decrease spasticity without a loss in muscle strength.
- Oral baclofen acts on the central nervous system to relax muscles. It also decreases the rate of muscle spasms, pain, tightness and improves range of motion.
- Benzodiazepines (Valium® and Klonopin®) are a group of drugs that act on the central nervous system to relax muscles and temporarily decrease spasticity.
- Dantrolene (Dantrium®) sodium acts directly on the muscle by blocking the signals that cause muscles to contract. The use of Dantrolene can lessen muscle tone.
Injections: Injections of botulinum toxin (Botox®, Myobloc® and Dysport®) prevent the release of chemicals that cause muscle contraction. These shots target specific limbs or muscle groups affected by spasticity. A Phenol injection destroys the nerve pathways that are involved with spasticity of a specific muscle group from six to 36 months.
Intrathecal Medication: Intrathecal Baclofen™ (ITB) therapy delivers Lioresal Intrathecal®, a liquid form of the drug baclofen, directly into the spinal fluid. A programmable pump is surgically placed below the skin near the abdomen. The pump constantly delivers small doses of medicine.
Surgery: Surgery can be done on the muscles or the tendons and joints. Surgery might block pain and restore some movement.
Your health care professional can tailor spasticity treatments to each person by looking at the extent of the problems, individual symptoms and personal lifestyle goals. Your doctor will also help you understand how much medicine you need and the side effects.
* National Stroke Association does not endorse or recommend one drug or treatment over another.
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