Parkinson’s Disease Disrupts the Life of a Single Dad
Muscle spasms, stiffness, and decreased motor skills are not symptoms commonly associated with younger people in their 20s and 30s. For Bill Swayze, however, these symptoms appeared and resulted in an early diagnosis of Parkinson’s at the rare age of 29.
The untimely diagnosis especially upset him because of another event in his current season of life: raising his seven-year-old daughter by himself. In his article “How Neurosurgery Helped Me Cope with Parkinson’s Disease,” he wrote that he could not spend as much time with her as he felt he should, and he also worried because she was too young to fully grasp what was happening to him. He goes on to say, “My daughter. What kind of future could I have with her? She was a headstrong 7-year-old at the time who didn’t yet grasp the uncertainty of my health. And that would drag me into a dark, depressing place” (Swayze). Determined to live a better life with his daughter, Bill decided to take a chance and dive into the risky waters to brave a surgery that would hopefully alieve some of his symptoms: deep brain stimulation (DBS).
How Deep Brain Stimulation Works
Some surgeries performed to abate the symptoms of Parkinson’s involve permanently destroying malfunctioning sections of the brain which are thought to be responsible for creating some of Parkinson’s effects. In contrast, deep brain stimulation (DBS) doesn’t destroy any part of the body. Instead, it involves inserting permanent electrodes in the brain along with a generator in the chest, and together these work to regularize the abnormal “pace” of electrical signals in the brain, a side effect of the loss of dopamine caused by the disease itself. While it unfortunately does not replace the cells damaged by Parkinson’s, it has been shown to relieve the symptoms by correcting the brain’s behavior.
The details of the surgery seem frightening at first. It involves brain mapping by MRI or CT scan, two small holes drilled in the skull (one on top of the head and one behind the ear- about 1.5 centimeters or the size of a nickel though the incision itself is larger), one small hole just below the clavicle near the chest for the generator, and being partially or fully awake depending on the stage of the procedure. However, much to the patient’s relief, it is not as scary as it sounds. Though the patient is still partially awake in order for brain mapping to easily occur, local anesthetic and intravenous sedatives are given to ease the patient from pain.
The Mayo Clinic lists considerably dangerous possible side-effects and complications, but they do not often occur. The most serious one is a stroke, which happened in about 1-3% of patients. Other possible complications include infection, which occurs in about 4% of patients, and problems with the equipment implanted. The chances of having problems with the hardware are present for both short and long-term; thus, it is hard to calculate the exact risk, but it seems to be relatively low and not common.
One study by Albert J. Fenoy, M.D., and Richard K. Simpson Jr., M.D., Ph.D, calculated the combined long-term risk of having either a serious infection or hardware difficulty that would require additional surgery at 6%. In the study, there were 23 infected patients out of 728 total who received the treatment, but for 10 patients the infection cleared up before surgery was required. The remaining 13 form part of the given 6% statistic which is combined with the hardware malfunctions. There are also several other less severe side effects such as balance problems which already occur in Parkinson’s patients.
Despite the chance of severe reactions, many people reason that because the risk is so relatively low and the disease is so debilitating, deep brain stimulation surgery is a risk worth taking. Disheartened and irritated by the constant barrage of life-altering symptoms, Swayze decided if there was a chance DBS might could help him, he would try it. He states, “Having brain surgery was scary. But having Parkinson’s was maddening” (Swayze).
Three years after the surgery, Swayze earnestly declares that his decision was worth it, citing gradual relief just a few weeks following the surgery and realizing his growing potential to live a fuller life today. Knowing this, he claims he wished he had underwent the surgery years ago.
DBS allowed Bill to gradually wean off the medications he had been taking as he gratefully watches his significant improvement. Determined to keep fighting to feel the best he can, he also realizes exercise makes up a crucial part of the healing process, “I learned exercise is an effective way to slow the progressive movement disease. So I try to exercise five mornings each week for three hours, riding a stationary bike, and taking yoga, Pilates, Zumba, and other classes” (Swayze). Yoga and stationary biking are especially recommended for Parkinson’s patients because they teach the body balance and resilience with a reduced risk of injury compared to other exercises like running or riding a moving bike.
Perhaps one of Swayze’s grandest achievements in his life since DBS has been spending more time with his daughter and getting married. He says, “Now, three years after the procedure, my life continues to improve. I became more outgoing and positive about life, and met and married an incredibly funny, witty woman Jersey City who loves music and art, and sees and appreciates life as I do” (Swayze).
Acknowledging his continued friendship and gratitude to the team who guided him through the process, Swayze sent a picture of him with his newly wedded wife to Dr. Danish, the man who performed his surgery. Dr. Danish responded, “It’s pics like this that really make it all worth it” (Swayze).
“Deep Brain Stimulation.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 11 Nov. 2015, www.mayoclinic.org/tests-procedures/deep-brain-stimulation/details/risks/cmc-20156104.
Fenoy, Albert J., and Richard K. Simpson. “Risks of Common Complications in Deep Brain Stimulation Surgery: Management and Avoidance.” Journal of Neurosurgery, Jan. 2014, www.thejns.org/doi/full/10.3171/2013.10.JNS131225.
Swayze, Bill. “How Neurosurgery Helped Me Cope with Parkinson's Disease.” TAPinto, 2 Oct. 2017, www.tapinto.net/articles/how-neurosurgery-helped-me-cope-with-parkinsons.
UCSF Department of Neurological Study Faculty. Parkinson's Disease FAQ- Deep Brain Stimulation for Parkinson's Disease.www.neurosurgery.ucsf.edu/index.php/movement_disorders_parkinsons.html#surgery_types.