Story of Hope
On the Pulse of Treating Parkinson's Disease
For nearly 50 years, Susan Swander was an avid tennis player, rider, sailor, hiker, general sports enthusiast, and a lover of needlepoint. All that changed when she was diagnosed with Parkinson’s disease about 10 years ago. As the tremors began to set in, Susan had to put the activities she loved on hold until she could figure out a way to manage the disease.
Susan and her husband Don, who is not in the medical field, but has a strong interest in medicine (“He was reading medical books while we were reading Dick and Jane,” according to Susan), began to learn about the disease, including types of medications typically used to treat Parkinson’s, and which doctors in the Boston area would be the best to oversee Susan’s care.
Susan’s first neurologist, who was not a BIDMC physician, put her on Requip, one of the standard treatments for Parkinson's, which worked reasonably well for a few years. Then around 2008, Susan noticed the drug seemed to be losing its effectiveness and needed a dosage adjustment, as is common with a degenerative condition like Parkinson’s.
One of Susan’s tennis playing partners, Dr. Frank LoGerfo, who was a long-time vascular surgeon at BIDMC, recommended that Susan make an appointment with Dr. Daniel Tarsy, a neurologist and Director of the Parkinson's Disease and Movement Disorders Center at BIDMC.
“Dr. Tarsy decided Susan’s meds weren’t right so he started a different regime, which turned out to be quite effective,” Don said.
The meds successfully managed Susan’s symptoms for another few years. Last August, when Susan went back to Dr. Tarsy for a dosage adjustment, he recommended that Susan be evaluated for an innovative surgical treatment called deep brain stimulation (DBS). Deep brain stimulation involves a series of procedures where electrodes are implanted into certain areas on either side of the brain.
“Years before, I asked my former neurologist about DBS but he told me I wasn’t a good candidate,” Susan said. “So when Dr. Tarsy suggested it, I was very excited and, at the same time, scared to death. Imagine having brain surgery with only a local anesthetic so that the doctors could ask me questions during the surgery to enable precise electrode placement.”
Susan had three procedures in total — during the first two, electrodes were implanted into each half of the brain by Dr. Ron Alterman, Chief of Neurosurgery, and Rami Burstein, PhD, of the Department of Anesthesia, Critical Care and Pain Medicine.
Later, on the day of the second operation, about a month after the first one, Dr. Alterman implanted batteries (pulse generators) under the skin in Susan’s chest, near her collarbone, one on each side. Wires from the brain electrodes were also placed under her skin and guided down to the battery-operated pulse generator. General anesthesia was used during this procedure.
A couple of weeks after the last procedure was completed, Susan and Don returned to BIDMC so that Dr. Ludy Shih, Director of the Deep Brain Stimulation Program, and her team could activate the pulse generator. This is easily done from outside Susan’s body using a special programming device that communicates with the pulse generator by resting it gently on top of the chest where her battery is implanted. As with all DBS patients, the amount of stimulation was customized to Susan’s condition.
Before the procedures began, Susan’s multidisciplinary team of doctors was careful to set realistic expectations regarding the outcome. They told Susan that it could take several iterations of sending the right pulses to the right places before they found the “magic touch.”
“Even though they prepared me, I didn’t know what to expect,” Susan said. “I expected to feel better … I certainly couldn’t feel any worse.”
“She wanted it to succeed so she could try out for the U.S. Olympic tennis team,” Don added jokingly.
Within four to five weeks, the doctors had it nailed. The tremors disappeared and to this day, Susan is no longer on any Parkinson’s medications. The only symptom that remains is with Susan’s voice. She still finds it a little difficult to talk.
“After they hooked me up and I noticed the results, I wanted to do cartwheels down the hall,” Susan said.
Susan still hasn’t picked up her racket or her needlepoint. It turns out, the previous symptoms of her Parkinson’s disease was masking another health issue — spinal stenosis, for which Susan needed spine surgery, which was also performed by Dr. Alterman.
Spinal stenosis is a narrowing of the open spaces within the spine, which can put pressure on the spinal cord and the nerves that travel through the spine.
Susan is still recovering from her spine surgery and is attending physical therapy regularly. The recovery process for this is much longer and more involved than the deep brain stimulation, which had her back on her feet in a couple of days.
“I’d rather have brain surgery than back surgery any day,” Susan said.
Months after her spine surgery, Susan and Don remain grateful for the care Susan received at BIDMC and can’t give enough credit to all who were involved.
“I’m still sometimes stunned that all those doctors and nurses were involved in my care … it was quite amazing,” Susan said. “The team is quite talented and BIDMC has high standards.”
With the surgeries behind her, Susan hopes to start her needlework soon, but one activity she has enjoyed returning to is walking - something she truly missed and doesn’t take for granted. Susan and Don recently took a trip to the Peabody Essex Museum — something she said she hasn’t been able to do in years.
“I feel very lucky,” Susan said. “I’m still kicking. Maybe I will do those cartwheels down the hall.”
Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.
Posted November 2013