When Susan Veater was diagnosed with Parkinson's disease in July 2015, she didn't know much about the disease. "When I got the diagnosis, I wasn't sure what it meant," Veater said. "I just knew I was uncomfortable and in pain."
The diagnosis was four years in the making. In 2011, she went to her doctor with a curious symptom. It had to do with her sleep behavior. "I was acting out my dreams," she said.
After doing a bit of research, she discovered a potential cause of her symptoms: Rapid eye movement (REM) sleep behavior disorder. She decided to take her findings to her health care provider. "I met with my GP and handed her a piece of paper describing REM sleep behavior disorder," Veater said. "And I told her, 'I think I have this'."
Rapid eye movement, or REM, sleep is a normal phase of sleep where the body and muscles are completely relaxed. Because of this level of relaxation, there's usually little to no body movement during REM sleep.
However, with REM sleep behavior disorder, the body can physically respond to dreams, acting out what is happening in the dream. This can be dangerous to both the patient and their bed partner. What Veater didn't know back in 2011—and what most patients don't know—is that this sleep disorder can be an early symptom of Parkinson's disease and related disorders.
REM sleep behavior disorder can sometimes be experienced years before patients develop any other sign of Parkinson's disease. Many patients never bring up the fact that they have been acting out their dreams because they don't think it's a symptom of the disease, and therefore irrelevant.
In early 2015, four years after being diagnosed with REM sleep behavior disorder, Veater started having tremors in her left foot. The tremors then spread up her leg and to her arm, continuing to spread to the other side of her body. "The tremors were painful," Veater said. "My left arm was the worst—it ached all the time from the constant tremors."
Despite using many different oral medications, Veater's symptoms continued to worsen over the next six years. "I experienced terrible fatigue," she said. "I couldn't stand and make a meal in the kitchen. I'd start a meal and then would have to call my husband in to finish it. My mom lives in our basement, and I would have to crawl up the stairs after visiting her, I was so tired."
Her health deteriorated as she developed some of the other problems associated with Parkinson's disease. Over time, she became—to a certain extent—incapacitated. On top of this, she experienced many negative side effects from the medications.
With her symptoms worsening and seeing little to no benefit from most of her medications, Veater's neurologist, Paolo Moretti, MD, chief of the Division of Cognitive Neurology at University of Utah Health, referred her to John D. Rolston, MD, PhD, a neurosurgeon and director of epilepsy surgery along with functional and stereotactic neurosurgery at U of U Health.
At this point in Veater's journey, Rolston suggested surgical intervention with deep brain stimulation (DBS), as medical therapy was no longer sufficient to control her symptoms. DBS is a surgical procedure in which electrodes are placed in the parts of the brain that cause tremors and other symptoms. These electrodes are connected to a pulse generator—the battery—in the upper chest. The battery then powers the electrodes, sending electrical stimulation into focused areas of the brain, which can then ease or completely get rid of tremors and other symptoms.
"DBS has been FDA-approved for almost 20 years now, and thousands of patients have had this procedure," Rolston said. "It's very safe and minimally invasive. Most patients see a significant improvement to the quality of their lives."
Even knowing the potential for a positive outcome, Veater was scared and overwhelmed when she was first approached about this possible treatment plan. "When DBS was suggested to me, I was terrified," she said. "To me, it was a scary, invasive surgery—brain surgery—and I didn't know if I could do that. But as my symptoms got worse, I realized I needed to trust the recommendation of my doctors and consider having the surgery."
DBS is a specialized procedure, and the state of Utah only has three neurosurgeons who are qualified to perform the surgery. Luckily for Veater, two are at U of U Health, and one of them—Rolston—ended up performing her surgery.
Rolston and Moretti partnered with Meghan Zorn, PA-C, to formulate a comprehensive treatment plan for Veater. Not every Parkinson's patient is eligible for DBS, as not each case of Parkinson's is created equal. Each patient is evaluated to ensure that they will benefit from the procedure, based on their specific circumstances.
While DBS is not a cure for Parkinson's, for eligible patients like Veater, it can help control the symptoms and improve the physical and mental well-being of the patient. "After my care team met to discuss my case, they let me know I was eligible for surgery," Veater said. "I was so excited, and I wasn't afraid anymore. My symptoms had gotten bad enough that nothing could be worse than where I was headed."
DBS is done in two separate surgical procedures. In the first procedure, electrodes are implanted in the brain and attached to lead wires that are surgically implanted under the skin in the neck so they can reach the pulse generator—their power source.
The second procedure involves implanting the pulse generator—or battery—in the upper chest, under the skin. Once turned on, this device not only provides power to the electrodes but also controls the intensity of the stimulation that the patient's brain receives.
Veater's surgeries were done on June 11 and June 23. Less than a month later, on July 13, Zorn turned on the device and performed an initial programming session. "When the device turned on, all of my symptoms went away," Veater said. "It's a miracle, with the flip of a switch. Even though I still have Parkinson's, all those bad symptoms are gone. It's so amazing. I am very, very grateful to Dr. Rolston, Dr. Moretti, and Meghan Zorn."
After this initial appointment, Veater started to realize how life-changing this treatment really was. "I realized not only was I not shaking, but I had energy," she said. "I could go up and down the stairs to see my mom three times in a row without catching my breath. I didn't realize how tired I was until after I wasn't tired anymore."
Because of the nature of the treatment, DBS is highly customizable. The pulse generator is programmed to meet the individual needs of each patient and can be adjusted over time. Four weeks after having the device turned on, Veater met with Zorn again to fine-tune the programming on the device.
"I noticed in the first month if I got really tired or stressed, the tiniest tremor would start in my hand," Veater said. "On my second visit on August 10, Meghan fine-tuned the programming and upped the amplitude on the device. Since then, everything is just perfect. But if I notice any other tremors, I can schedule an appointment to have the programming readjusted."
Veater continues to marvel at the change in her quality of life and her ability to do what she couldn't do before. Prior to surgery, she was unable to dress herself, write, or type. She is now able to do all these things without any problems.
"My sweet husband took such great care of me," Veater said. "And now there's just so many things I'm back to doing myself. I have my life back."
All patients with Parkinson's are evaluated on a universal scale: the Unified Parkinson's Disease Rating Scale (UPDRS), which helps track the severity of their symptoms over time. The more severe the symptoms, the higher the number on the scale. Since having the DBS device implanted, Veater's numbers have shown significant improvement.
Before the device was turned on, Veater's UPDRS score was 50. After the device was turned on and initial programming completed, her score was 18. And after the second round of programming on August 10—just a month after the device was turned on for the first time—her score was 10.
"The degree of improvement as measured by the UPDRS is impressive and confirms the effectiveness of DBS in controlling the patient's most disabling symptoms," Moretti said. "Ms. Veater's score was five times higher when the device was not turned on. Even patients who don't have Parkinson's can score as high as five, so a score of 10 for someone who does have Parkinson's is amazing."
Many patients tend to balk at the idea of surgery, seeing it as a last resort treatment option. However, DBS surgery can be done as early as four years from a Parkinson's disease diagnosis, provided that the patient meets other selection criteria for the surgery.
"We see a lot of patients who want to wait to have this surgery, very late in the disease," Moretti said. "Although surgery is considered a treatment of last resort in many cases, this is generally not the case with DBS. Ms. Veater's outcome is amazing, and it could be that she has done so well with it because she didn't wait."
And Veater is grateful she didn't wait. "I'm only 66 years old, and I have a husband, four kids, and 13 grandchildren to enjoy," she said. "I have been given my life back, I just can't tell you. There's no way to thank my health care team for all that they've done for me."