barry gym02 webBarry R. Ettl, Jr. of Allentown has a typical case of cerebral palsy (CP) but — at age 45 — he is getting stronger every day, which is not the usual progression of things with CP. Barry was diagnosed with CP at six months old. As with many children who have CP, it was at that age that his parents noticed he was not crawling or gaining other motor skills the way he should have been. They felt something was wrong, and medical tests confirmed their fears. Barry’s CP affected the part of his brain that controls balance.

Cerebral palsy is often misunderstood. It is actually a group of disorders caused by a brain injury or abnormality in brain development that affect a person’s ability to move and maintain balance and posture. The symptoms of CP vary from person to person. A person with severe CP might need special equipment to be able to walk or might not be able to walk at all. On the other hand, a person with mild CP might walk a little awkwardly, without any special help. CP does not get worse over time, but the exact symptoms can change over a person’s lifetime.

What makes Barry’s situation atypical is that his father, Barry R. Ettl, Sr. and mother, Janice, have used every available resource to help Barry stay mentally, physically and socially engaged. Faced with a decision recently to leave him in a public work program to give him social and physical stimulation, they decided to dedicate their own time instead to rehabilitating him; their goal: to prevent him from becoming dependent on a wheelchair and help him remain as strong and independent as possible.

Physical activity, physical therapy and socialization have long been used in the treatment of CP. When Barry was a young child, his parents enrolled him in the United Cerebral Palsy program, which provided mental stimulation and social interaction, and physical therapy one day a week.

At age six, Barry attended public school, starting with Hiram Dodd Elementary and then graduating from William Allen High School. After graduation, he participated in the Keystone Goodwill Adult Day Program, which gives disabled persons the opportunity to be productive in a work environment.

When Keystone Goodwill’s Allentown center closed in 2018, Barry and his parents elected not to have him transfer to the Bethlehem location; he would have had to commute two to three hours on a bus every day. Instead, Barry’s father decided that he would provide Barry’s rehabilitation program himself, becoming his personal trainer at the local gym where he was a member.

The Ettls are enrolled in the Medical Assistance Home and Community Based Waiver Program, also known as the Support Services Waiver program or simply the Waiver program, and Barry Jr. has a case worker assigned to supervise his participation.

barry gym 03 webBarry, Sr., who calls himself a lifelong “gym rat”, began taking Barry, Jr. with him to the local Gold’s Gym where he is a member. Together, they cycle through his workout four days a week, concentrating on a different muscle group every day.

A typical workout schedule for Barry is a 15-minute warmup; upper body and abdominals on Monday; back, biceps and abs on Tuesday; legs and abs on Wednesday; a day off on Thursday; and on Friday a free day to do any exercises he chooses. He does four to five sets of 10 repetitions for each muscle group and always finishes by walking on a treadmill. His dad insists on abs exercises in every workout because of the importance of developing core strength. He also does balance exercises at home.

Barry, Sr.’s goals for his son were to make him stronger in general so he could walk unassisted and do more on his own. Barry Jr. has exceeded those goals exponentially. Today he is walking over two miles on the treadmill and leg pressing over 250 pounds. At home he can walk up stairs holding the rail with only one hand. His time in the gym has increased from 24 hours a month to 40 hours. Barry, Jr.’s health has improved, as well. In January of 2019 he was able to discontinue the use of all asthma medications.

Socially, the gym is highly beneficial to Barry, Jr. He has a group of friends who attend in the morning and another group in the afternoon, so no matter what time he’s there, he has someone to talk to. The staff and other members are extremely friendly and supportive of him. Barry, Sr. makes it a point not to hover while his son is working out, to give him the opportunity to interact with other people on his own.

Barry, Jr. looks forward to his time there every day. At home, Barry Jr. likes to listen to music – mostly oldies from the 60s, 70s and 80s. He also enjoys movies and traveling with his family. They vacation frequently in Myrtle Beach and have recently returned from visiting Barry’s sister in Colorado.

The Ettls stress the importance of families with special needs seeking out the resources available to them. Many people who qualify for waiver services are not even aware that they exist. Families struggle alone to provide care -- creating economic, physical, and emotional strains. States do not educate people about these programs, and it is often only through crisis that people realize help is available. The Ettl family wants families who care for the disabled to know that help is available. There are organizations and resources available at the county, state and federal level.

Below is a list of organizations that may be able to help:

Medicaid Waiver Program and

Department of Public Welfare Helpline 1-800-692-7462

Lehigh County Department of Human Services 610-782-3000

Pennsylvania Department of Human Services or 800-753-8827

Lehigh County Home Based Care Waiver Programs or 610-782-3200

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