Iconic actor, writer and producer Henry Winkler spoke at the Shepherd Center in Atlanta this week to raise awareness about upper limb spasticity (ULS). While he was here, he also took the time to chat with Best Self:
Best Self Atlanta: What do you feel is the biggest misconception about ULS?
Henry Winkler: The unfortunate fact is that too many people don’t know they have upper limb spasticity (ULS) – a debilitating condition that can occur after a stroke or other neurological injury or condition that can be very uncomfortable, producing disfiguring muscle contractions that can result in stiff, tight muscles in the elbow, wrist and fingers, or a clenched fist.
Many people also don’t know that there are treatment options available. That’s why I’ve joined forces with an incredibly passionate coalition of national patient advocacy organizations to launch the Open Arms Campaign and spread the word across the nation. I’ve been traveling the country the past two years speaking to support groups, at patient expos and at hospital and rehab center seminars, to educate the many people who still do not know about ULS.
I recently made a stop in Atlanta to share my personal experience with patients, caregivers and doctors at Shepherd Center. I know all too well the toll ULS can take on a person. Before she passed, my mother suffered from this debilitating condition for 10 long years following her stroke, and I remember all too well her struggle to perform some of the most basic tasks of daily life. Unfortunately, there was so much less known about ULS back then.
Today, not only do we have a better understanding of ULS, we know more about how to manage the condition, including botox which is FDA approved to treat ULS in adults. The good news is there are treatment options and resources available to help people manage the condition through the Open Arms Campaign website – www.OpenArmsCampaign.com.
BSA: What are some important questions people can ask their doctor about ULS?
HW: The unfortunate fact is that despite very visible symptoms, ULS often goes under-recognized and under-diagnosed because it may develop weeks, months or even years after the original injury – after discharge from the hospital or when patients are no longer seeing specialists familiar with the condition. If you think you or someone you know may be suffering with ULS, I encourage you to speak to a doctor, such as a neurologist or physiatrist, about the symptoms you’re experiencing because in many cases, treatment options are available to help manage the condition. Even if you have been struggling with the condition for many years, it is never too late to speak to your doctor. When you do, here are a few tips to keep in mind:
- Have your medical history handy, especially information related to the injury or condition that may have led to your ULS
- Know and share your personal health timeline with your doctor, as it will be important in evaluating and diagnosing ULS
- Be prepared to describe your symptoms, when they started and their severity
- Ask what treatment options are available and appropriate for you
BSA: How can people get involved to raise more awareness?
HW: As I crisscrossed America for the past two years exchanging stories with patients and caregivers, it has amazed me just how powerful and impactful it can be for those living with ULS. Whether you are someone who has ULS or care for someone who does, you likely have an inspiring story that can help inspire others. You can read more about my story and others and also submit your own at www.OpenArmsCampaign.com.
BSA: How has your personal experience with ULS changed your outlook?
HW: We all face challenges in life, and caring for someone who has survived a debilitating injury or a chronic condition can indeed be a challenging experience.
As a caregiver to my late mother who suffered from ULS for ten long years following her stroke, I know it can be difficult to watch someone you love struggle with simple daily activities.
It is nothing less than inspiring to me to have met so many compassionate caretakers and it has been a privilege to have had the opportunity to connect with them through my traveling across America with the Open Arms Campaign.