In 2011, brothers John and Ron Slee received similar diagnoses—John has Parkinson’s disease and Ron, essential tremor. Their diagnoses were precipitated by similar symptoms that started only months apart—tremors in their arms and hands. These were particularly severe for John. At the time of diagnosis, Ron was 50 and John only 44. Looking for answers together, the brothers sought help at Penn State Neuroscience Institute, becoming patients of neurologist Xumei Huang, MD.
Just about four years later, in 2015, their symptoms were progressing more rapidly, causing frustration and challenges day-after-day. Their jobs and many other daily tasks became too difficult. Through friends they learned about a lunch-and-learn at Hershey Medical Center that they attended that March. The monthly session features neurosurgeon, James McInerney, MD, who presents information about deep brain stimulation (DBS). DBS is a surgical procedure used to treat symptoms related to movement disorders like Parkinson’s disease and essential tremor, including the tremors both brothers suffered from. It can also be used to treat rigidity, stiffness, slowed movement and problems walking, symptoms that others may experience. Following the session, the brothers knew that DBS could benefit them both. After research online and speaking with the friends who had recommended the event, they came to the conclusion that DBS would be advantageous for both of them. They were in this together!
DBS – Changes for the better!
Thankfully, with the help of DBS, both John and Ron’s tremors subsided. DBS surgery requires a series of appointments. The first is to place the leads, thin insulated wires, which supply the electric impulse to the brain. This is done with local anesthesia so that the patient can interact with the care team to make sure placement is correct. The brothers stayed only one night in the hospital, which is typical for most patients. One week later, the battery pack that powers the stimulation was placed and then two weeks later, there was an appointment where the device was programmed for each individual patient. Ron’s progress was immediate, but John had to have his programmed two additional times after surgery, which isn’t unusual, based on the severity of their symptoms.
While Ron’s symptoms from his essential tremor were not as pronounced as his brother’s from Parkinson’s, they still affected him both at work and home. “I enjoy hunting and fishing. After I was diagnosed, I stopped enjoying both. Now, with the help of DBS, I no longer have tremors and I’m enjoying ‘living’ again! After the surgery, I returned to my job. I can now enjoy spending time with family and friends and working on projects around the house again. Hunting, fishing, hiking and being outdoors are again some of my favorite activities!”
John’s Parkinson’s symptoms were especially troubling to him. “One of my biggest accomplishments is that I can go out and cut wood with a power saw.” John has cut wood this way most of his life, even using wood to heat his home. He had to stop when the tremors became an issue. “With Parkinson’s, it was just not negotiable – there was no way I could continue using a power saw, at all,” says John. “Once my tremors started, I didn’t trust myself to do that kind of work. Naturally, I worried about injuring myself, and could not take the risk.” Now, thanks to DBS treatment at Hershey Medical Center, John continues his environmental work for the Department of Defense, and has resumed many activities that he had stopped because of his tremors. In addition to his return to work, John also enjoys his church, the beach and trying new restaurants, again.
The return of the restaurant adventures with his brothers has meant so much to John. You don’t realize the impact of something seemingly so routine and minimal, until you are forced to change it, because of something beyond your control. “It’s the little things that we missed the most,” John said. “I really missed being able to go out in public and eat in a restaurant. For years, if I went anywhere, I had to sit on my hands so the tremors would not be noticeable to others. It was embarrassing. Many people, especially kids, would ask me why I was shaking. Even adults would talk about it from a distance. For me, personally, I felt humiliated. After DBS, what had once enslaved me no longer had control over my life and I am able to do many things that for the last few years, due to my symptoms from my diagnosis, were not possible.”
John and Ron were thankful to have each other to lean on throughout the process.
“This has been quite an experience for the two of us,” John said. “We travel from the Chambersburg area to Hershey Medical Center together for appointments. All appointments, except one, were scheduled with the same provider at the same time. And our surgical appointments were only 2 days apart. This gave us the opportunity to recuperate together, and support and encourage each other.”
They are also blessed with a supportive family. Their other brother, Don, and sister-in-law, Kim, encouraged them to do what was best for their quality-of-life. Their symptoms prevented them from driving, so Don and Kim drove them to appointments when necessary. They also have a strong network of friends and coworkers.
John and Ron are currently being treated by Penn State neurologist, Elisabeth Lucassen, MD, and are inspired by how DBS surgery has allowed them to return to their lives – the lives they knew and enjoyed prior to their symptoms and challenging diagnoses in 2011. “Everyone on the Penn State Health care team is very friendly,” John said. “The staff relates well to patients from all walks of life and treats patients with dignity and respect. Issues are taken care of immediately and we have never felt like a bother. It seems no problem is impossible for them.”
And . . . about that soup?
As for these brothers, two tasks that seemed impossible for them before DBS were eating soup without spilling and flipping eggs and pancakes in a skillet. Thanks to treatment, they have returned to doing both with ease!