Regena Guinhawa’s Parkinson’s Disease Patient Story
Moving Better, Thinking Clearer, Talking Louder
Regena Guinhawa was used to leading an active life. A native Californian, she loved the beach and headed for the mountains whenever she could. “I loved taking the kids up there, and later, my grandkids,” she recalled. “She’s always lived her life to the fullest,” agreed her son, Russ Byrd.
Regena was 55 years old when she noticed her hands had begun to twitch. “I started shaking a lot, and that got me scared,” she said. She was diagnosed with Parkinson’s Disease and began taking medication. Initially it helped, but over time, the benefits wore off. “I was delivering Meals on Wheels and I had to stop. I couldn’t drive anymore. It made me angry, like I was losing my life.
“After about four years, I was in bad condition. I was down to 100 pounds. My body would freeze. My tremors were getting worse. One time, I didn’t stop shaking for six hours and I had to go the ER,” she said. “I never went that long before. I was ready to try anything.”
Her son brought her to his home in Chicago. “When she got off the plane, she was in a wheel chair. She couldn’t walk at all. She was bent over at a 90-degree angle,” he said. “She needed help going to the bathroom. We had to be physically in the shower with her. We needed help, so we made an appointment and brought her to RIC.”
Treatment Targeted Toward Parkinson’s Disease
RIC’s Center for Parkinson’s Rehabilitation has the nation’s largest team of clinicians who are specially trained in treating Parkinson’s Disease. Among them was occupational therapist Summer Shepstone. “For people with Parkinson’s Disease, a lot of the problem is perception. They think they’re moving normally, but they’re much slower and stiffer—for instance, they think they’re walking normally, but they’re taking small, shuffling steps,” she said. “To overcome the symptoms, they have to increase their efforts. We cue them to increase their awareness. Then we teach them to cue themselves.”
Because fear, anxiety and pain play crippling roles for Parkinson’s patients, RIC therapists also teach stretches, progressive relaxation and other techniques that help patients lead more productive lives.
Shepstone was part of the team guided by Dr. Santiago Toledo, medical director of the Center for Parkinson’s Rehabilitation. Under their care, Regena quickly improved. “The therapists got me to lay on my back straight out. It was the first time I’d done that in years,” she said. “They taught me how to work through a lot of things.”
Her son saw the progress immediately. “We were so excited. She came here and stopped shaking,” her son said. “Within two weeks of inpatient treatment, she could put on her own shoes now, her own clothing. She was able to start putting makeup on again, and obviously that lifted her huge.”
Regena even took part in a cutting-edge research trial at RIC. Researchers are harnessing the sensor tracking technology in smart phones to help track movements of patients with Parkinson’s Disease. Using mathematically algorithms, they can better assess how patients move as they go through their day-to-day lives outside a doctor’s office, even tracking a patient’s progress over time. “These modern mobile phones have very good movement sensors built in,” said Konrad Kording, PhD, director of RIC’s Economics of Movement Lab. “This technology allows us to monitor how the patients’ lives get more active after they’ve come to RIC.”
Regena has begun to live her life pain-free and is making plans for the future. “I’m ready to go to the beach, to see Lake Michigan,” she said. “And I’d like to travel to California and see my other grandchildren and my great-grandchildren.”