Betty and her husband Dennis Leebel are involved in a life-or-death battle. She has Parkinson’s disease, and he has taken on the volunteer job of setting up helpful workshops and events like the Aging in Place event being held Thursday, Jan. 23, at Cape Henlopen High School for those who want to know more about local programs of all kinds designed to help people stay in their homes for the regular aging process or if battling a disease such as Parkinson’s. The program is from 5:15 to 9 p.m. with exhibitors as well as speakers. A snow date is Thursday, Jan. 30.
Parkinson’s disease is a disabling condition of the brain characterized by slowness of movement, shaking, stiffness, and in the later stages, loss of balance.
The disease dates back to 1817 when an early British druggist named James Parkinson published an essay on the “Shaking Palsy.” The term “Parkinson’s disease” was coined seven decades later by a French neurologist.
For more information on Parkinson’s disease or the Parkinson’s group, contact Dennis at 302-644-3465.
Any seniors looking for help staying in their own homes can contact the nonprofit Greater Lewes Community Village at 302-703-2568. There is a yearly membership fee that includes services including transportation, small home repairs, friendly visits, phone calls and more. A recommended vendor list is available. Hours to reach them are 10 a.m. to 4 p.m., Monday through Friday.
Delaware’s Division of Services For Aging and Adults with Physical Disabilities also operates the Delaware Aging and Disability Resource Center for the Administration on Aging.
The Leebels, now in their 70s and retired, have had experience working in the U.S. and abroad. He worked for the U.S. Department of Defense as an operations officer. She accompanied her husband, and lived and worked as a teacher in places such as Japan and Germany.
Betty was diagnosed with Parkinson’s by physicians at Johns Hopkins in Baltimore, Md., in 2002 at age 62. She has been living with the disease for more than 10 years.
“I had no primary symptoms such as tremors, balance problems and shuffling footsteps,” she said. “But, there were other signs such as the fact that my arms didn’t swing when I was walking. My face became expressionless, and my handwriting got bad.” When the diagnosis finally came, she realized that she had other earlier symptoms, too, but didn’t recognize them at the time.
A key doctor after the Leebels moved to Lewes full time was Dr. Lawrence Kemp, a neurologist who used to practice in Lewes but is now in Selbyville. His office number is 302-564-0001. With his help and the help of other doctors and medical resources, Betty and Dennis were able to compare notes with other Parkinson’s patients.
There were things such as Skype video teleconferences and other things that were useful to the Leebels, but there was not much nearby. That’s where Dennis stepped in to fill the gap.
After finding out that there was no support group in the beach area, he wrote and delivered a fact sheet describing the needs for one and an invitation to local people to attend a get-started meeting in March 2009. He took his fact sheet to doctors’ offices, churches, libraries, physical therapy and other places. Fifty people came to the first meeting.
The group was called Parkinson Education and Support Group of Sussex County. Now, the group has grown to 200 people, half of them caregivers. Dennis, as leader, assists with program planning and advertising. Betty is the group’s librarian. Others handle registration, name tags, the email list for the group’s monthly newsletter and questions members have. ”There are no dues,” said Dennis. “We pass the hat.”
Like many Parkinson’s sufferers, Betty Leebel has side issues with the disease. She has a curvature of the spine, or scoliosis. Gradually, she is losing her core strength from the shoulders to the hips.
Now bent over, Betty walks with a walker which helps her stand up and breathe better. It’s no wonder many of those suffering from Parkinson’s also suffer from depression.
The Leebels have no time for depression. They are positive people, always researching and planning new events that will help others. Betty goes to regular exercise classes and studies tai chi. She also gets massage therapy. “And, Dennis encouraged me to try acupuncture,” she said.
Dennis believes in keeping moving. “It’s better than medicine,” he said.
A blessing is their son, John, who is a builder and lives in the Lewes development where the Leebels now live. He created the home in 2007-08 for his parents, with many helpful features for his mother, such as:
• Rails on both sides of stairways. Betty doesn’t have to use the stairs if she doesn’t want to.
• No doors in lower kitchen cabinets, just drawers.
• A chair lift in the rear of their home.
• Door handles instead of knobs.
• A 36-inch-wide doorway to the shower which can accommodate a wheelchair if needed. Other doorways have been adjusted for possible wheelchair use.
• The bathroom commode area is 36 inches wide.
To aid in fundraising, Dennis was able to get 501c3 status for the local Parkinson’s group. They now hold an annual fundraising walk on the Rehoboth Beach Boardwalk. More than $13,000 was raised last year. Funds raised go to programs for the group’s members. This year, the second year for the walk, the event will be in held in May on a date yet to be announced.