In a previous blog post, “Increasing the Altitude to Decrease the Symptoms of Parkinson’s Disease” a PA student described the relief of Parkinson’s Disease (PD) symptoms experienced by arguably the most influential person with PD in the United States, Michael J. Fox. This got the rest of us thinking, could people living in Summit County who may be faced with this debilitating disease have a decrease in symptoms? I was fortunate enough to interview Nancy and Tom, full time residents of Summit county for the past 11 years, who offered insight to this question. When I started this interview, I was seeking only the facts related to PD symptoms at altitude. But within the first couple minutes I knew it was going to be something much different.
I met Nancy and Tom in a local coffee shop one morning. First, Nancy came in. She was full of energy, articulate, and eager to answer my questions. She began the story. Nancy is no novice to PD; she has cared for people with the disease twice in her life. First, with her father and now with her lifelong partner. She has experienced similarities and differences over the course of both of their illnesses.
Nancy’s father lived on the Front Range of Colorado at the time of his diagnosis. He was 75 years old and had some prior health issues including open-heart surgery. He experienced cognitive changes and within 5 years he was living in a nursing home. These cognitive changes were an indication that the disease was severe and would progress more quickly. He became incontinent and quickly found that he could not care for himself. After fighting PD for 10 years, he passed. Nancy’s mother passed just 3 short months after her father.
During this time Nancy was at the height of her career in education, working long hours, in a world that she describes as “publish or perish”. For her, the decline and eventual death of her father seemed like part of the normal aging process. She cannot recall any clear difference in her father’s symptoms when at altitude versus closer to sea level. She says that his decline was much quicker than her husband’s has been.
For many years Nancy and Tom lived in Denver, but also had a home in Silverthorne. In 2008, prior to his diagnosis they moved full time to Frisco, CO. Nancy describes Tom as always being “fidgety”, but even she admits that fidgety is an understatement. She was really tipped off that something was wrong when Tom would wake up in the middle of the night and “throw himself off the bed” in a fit of a nightmare. This occurred for several years and was so bad that she couldn’t sleep. Sleep disorders are one of the most common non-motor symptoms of PD and usually increase over the course of disease. It was these symptoms that eventually led them to see a neurologist. He was diagnosed with PD approximately 8 years ago.
As Nancy and I were speaking Tom strolled in to the coffee shop. Tom is 73 years old and the first thing I noticed was that he was a handsome man with an athletic build, but walked with a slight stooped posture. His gait was smooth, but perhaps not as quick as a man his age without PD. This slow gait is a common symptom of PD and medically referred to as bradykinesia.
As Tom begins to speak his voice is soft and raspy. He says that his brother and nephew speak the same way and he has attributed this to years of yelling during sporting events and coaching. He has even undergone procedures on his vocal cords. However, it’s hard to know why his speech is so soft, as difficulty with speaking is also a secondary symptom of PD.
Tom grew up in Pueblo, CO, which sits at about 4600 ft. He was always extremely athletic and went to college on a football scholarship. But he’ll tell you he wanted it to be basketball. He was a long time ski instructor, enjoyed golf, and taught middle school physical education. He was always coaching and motivating his students. Nancy describes Tom as well coordinated and unable to sit still. However, in 1993 he was in an accident where he fell while rollerblading without a helmet. He hit his head, which left him with a subdural hematoma. Tom was admitted to the hospital and underwent surgery. He spent weeks in the hospital and endured intense therapy to regain strength for everyday activities including learning how to drive and shower.
So, the question becomes has altitude ever played a role in Tom’s symptoms? They have traveled and been on planes since his diagnosis. But the short answer seems to be no, he hasn’t noticed a difference. In one account from the previous blog post on PD, a patient noticed a reduction of symptoms when a plane went above 10,000ft. Tom has been on plane several times, with the most recent being last fall where they flew to Maine to visit their granddaughter. He stated that he did not notice any reduction of symptoms at that time. In fact, Nancy reports that both his cognition and mood were exceptional in Maine. When I asked Tom to recall a time when he has noticed a change in symptoms he said only when he misses a dose of medication or when he is not active for long periods of time. Tom takes Sinemet, which is levodopa, a chemical compound that is converted to dopamine when it crosses the blood brain barrier. It’s one of the only medications that quickly and effectively decreases the symptoms of PD, but it does not stop the progression of PD.
This led us to wonder, has he potentially become acclimated to living at altitude his entire life? He has been at 9000ft for many years; may he not be reaping the full benefits that could come with intermittent hypoxia? Even when he skis at 11,500 ft., which is only a 2500 ft. increase from his baseline, is that not a large enough increase?
There are still many questions that are unanswered. And there remain reasonable theories about the effects that altitude can have on a patient with PD. For future families like Nancy and Tom I believe it could be a worthwhile avenue of exploration. But for now, Tom’s symptoms will be controlled with medication and exercise. He still skis, golfs and dances. When I asked about dancing, Nancy laughed as Tom reached over to touch her shoulder. Nancy explained that they don’t go out dancing but “We always dance in the kitchen, even when we had a small kitchen and now we have a big one.”
This blog post was intended to be scientific and related to research, and while we raised several interesting questions during our conversation, it ended up being much more than that. I am grateful to Dr. Chris for introducing me to Nancy and Tom, which sparked the conversation. I will forever be touched by their story. It’s moments like this in medicine that reminds us as students that even as we’re drowning in studying, clinic hours, and trying to pass exams, that humans are behind every patient. Thank you for sharing your story and I hope you keep dancing in the kitchen for many, many years to come.
Summit County has a Parkinson’s Disease support group that meet on the 3rd Friday of every month at 10am. For more information visit: https://parkinsonrockies.org/get-involved/support-groups/support-group-summit-county/
For another article on Parkinson’s Disease in Summit County check out this story from the Summit Daily: https://www.summitdaily.com/news/summit-county-local-shares-her-experience-living-with-parkinsons-disease/
Karisha Schall is a PA student at Midwestern University in Glendale, Arizona. During the past year of clinical rotations, she has traveled many places and moved a total of 7 times in Arizona, Colorado, and Washington. After graduation she will be working with the VA hospital caring for Veterans. When not working or studying you can find Karisha listening to music, enjoying the company of family and friends, or finding a way to be active through fitness.
Loddo G, Calandra-Buonaura G, Sambati L, et al. The Treatment of Sleep Disorders in Parkinson’s Disease: From Research to Clinical Practice. Front Neurol. 2017;8:42. Published 2017 Feb 16. doi:10.3389/fneur.2017.00042
Kumar. “Parkinson’s Disease.” Rocky Mountain Movement Disorders Center, www.movementdisorderscenter.org/parkinsons-disease/. May 1, 2019
Jones, D. “Parkinson’s and Alzheimer’s” Department of Pharmacology AZCOM. Midwestern University Lecture. March 14, 2018.
Driver-Dunckley, E. “Movement Disorders: What you need to know”. Department of Neurology. Mayo Clinic Arizona. Midwestern University Lecture. May 3, 2018.