Ross Collins, a physician, has an impressive medical pedigree. His great grandfather, grandfather, father, mother, and brother were all physicians, as are his wife, a sister-in-law and a brother-in-law. Ross remembers listening to his father, a medical school professor, practice his lectures on radiation oncology. “I grew up listening to my father’s lectures on oncology. He was an amazing man. Did you know he established one of the first hospice care organizations in Texas?”
Ross’s father developed a Parkinson’s like movement disorder, which forced him to retire from medical practice. Ross’s mother, who was still practicing medicine at age 84, became his father’s caregiver. As his father’s disability progressed, the daily visits to his “office” at the hospice became respite visits. The hospice enabled my father to go to his hospice “office” frequently. “These hospice visits let my mother, a radiologist, to take care of my father while she continued to work”.
Ross, a cardiologist, was diagnosed with Parkinson’s disease (PD) six years ago. He first noticed a tremor and weakness on his left side. He recognized what was happening. He had a complete neurologic evaluation, and voluntarily reported his diagnosis to the state Board of Medicine. His employer, his associates, and his neurologist were all supportive. Their support allowed Ross to wind down his practice while being observed by his peers to assure that he was still providing high quality medical care.
“People with PD need to be responsible and limit activities that could harm others. All people with disabilities, including those with PD, owe it to others with whom they work, to the people whom they serve in their work, and also to the their community. This is true for anyone with PD, whether a physician, teacher, school bus driver, skilled tradesman, financial advisor, or a retired person who drives his car on local streets. A lapse in memory, an unexpected movement, or fleeting disorientation could harm someone else. PD is not a private matter.
But Ross has not “quit.” For two years he volunteered at Senior Linkage helping people understand their Medicare coverage. He also became a patient volunteer and served on the Patient and Family Council at the hospital where he had practiced medicine. He no longer considers himself a physician. He does not use the title “Dr.”, and his photo I.D. says Ross C., volunteer, not V. Ross Collins, M.D.
He remains active with the National Parkinson’s Foundation Minnesota Chapter and at the Struthers’s Parkinson Center. “I continue to exercise at the Struthers Parkinson Center, participate in the Parkinson Foundation Minnesota Pedal and Roll events, and ski with other Parkinson’s patients.”
While at Struthers, Ross sometimes encounters people in the lobby or hall way who have a new diagnosis of Parkinson’s and are having their initial evaluation. Some of them appear overwhelmed and in distress. “They look like a deer caught in headlights. They don’t know what Parkinson’s means or what to do next. They are scared. I try to connect with these people and let them know that others have been through this journey. I tell them I have been there. I encourage them to take advantage of the many activities and support groups available through the Parkinson Center.”
“My life is even better now than before my diagnosis. As a physician I was responsible for my patients. As a physician with PD, I, with the help of my peers, was also responsible for monitoring my own abilities, recognizing my limitations, and retiring before my PD compromised my patient care. Today I am not responsible for anyone other than my family and myself. I get to enjoy the sunshine and I get to help others just starting their journey with PD.”
Written by V. Ross Collins and Susan Gangsei, author of The Light in the Middle of the Tunnel – Harrowing but Hopeful Stories of Parkinson’s Family Caregivers.
If you want to see Parkinson’s in a new light you only need to drive by Mike Justak’s home in Plymouth, Minnesota. He shines not one light, but more than 50,000 of them. For the holidays his home turns into what he’s dubbed “PD Shimmers,” a Christmas light show synchronized to music, in order to raise awareness of Parkinson’s disease (PD).
“My advice to anyone who has recently been diagnosed with PD is to assemble a team that can help and support you as things evolve. Continue to do the things you like, such as being with friends and going to ball games. Stay positive and have a sense of humor. Things will fall into place as you go.”
My Parkinson's story began when my mom, Sharon, was diagnosed with Parkinson's disease when I was in high school.