Breathing
My boxing coach talked about breathing techniques recently. That subject triggered me to recall an episode that happened shortly after I started my medical practice nearly 40 years ago. A WWII Marine veteran of Peleliu (a particularly bloody battle in the Pacific) came into the office for a routine check. He had smoked at least a pack of cigarettes a day during and since the war and had accumulated 80 pack years (a pack a day for a year equals one pack year) and he had chronic bronchitis and emphysema as his primary problems. Television calls it COPD, chronic obstructive pulmonary disease. People who smoke start running into health issues related to smoking at about 30-40 pack years. I asked him how his breathing was that day and he answered, “Well Doc, it’s just the same, in and out, in and out.”
Storytelling
I realized he was not trying to be funny when he didn’t crack a smile and I carried on with his checkup, reminding myself to file that answer away and to be more specific in asking my questions. I listened to his lungs, he was not wheezing, and we went ahead with the rest of the visit. As he got progressively worse and as we got to know each other over the years, he seemed to get benefit from telling his stories about combat in the Pacific. I made time to hear his nightmarish accounts of combat. Maybe he told the stories to his wife, but I doubted it. I think I was part of his informal what we now call PTSD therapy. Years later, he lay in the hospital with pneumonia as he fought his final battle, and he told me again of November 1944 and that Pacific Island ten-week battle, that resulted in almost 10,000 U.S. casualties.
Then he laughed and said, “You’ve heard me tell this story before. You are nice to listen, now go on home and let an old man die.”
I thought he was stable at the time and was sad but not surprised when the nurses called me at home in the middle of the night to tell me he had passed away peacefully in his sleep.
My boxing coach reminded me of this man’s story when she asked us after exercise how we were breathing. She said, “It is better to breathe through your nose than your mouth.” I thought of my former patient friend when I thought, “anyway, I can get air in will do right now,” and wondered if that’s what my veteran thought when I asked him in the office. But I never asked him if he was joking with me with a straight face or if that was really his serious answer. Sometimes we get answers we don’t anticipate.
Sharing
Parkinson’s Disease (PD) sometimes sends us answers we don’t expect as well. If we don’t ask, how can our provider tell us whether symptoms are PD related? There are a number of minor signs and symptoms that may pester us yet have treatments available. Restless leg syndrome, orthostatic hypotension, dystonia in the hand and feet, blepharospasm (involuntary eyelid closure), strabismus (where we see double while reading due to weakened eye muscles), and hallucinations are little known to us, but not uncommon in PD. We have to ask and tell our provider about our symptoms. It is often difficult to separate dyskinesia from a leg cramp, a nightmare from a hallucination, or eye fatigue from convergence insufficiency. A myriad of symptoms bombard our receptors and filters asking, “Is this relevant to PD, is this something I should bring up, or is it just part of me separate from Parkinson’s? What is too much lightheadedness when I stand up, maybe I’m dehydrated, or maybe my eyes are just tired.” We have to use our filters to accurately describe what we don’t understand and that may be incredibly difficult, even for someone trained to interpret medical signs and symptoms. With the wide variety of presentations and symptoms, it’s entirely understandable that we are unsure what is Parkinson’s and what has other causes.
Learning
Before your visit to the neurologist, think about what you plan to accomplish during the visit. Whether it is medication, DBS settings, the future, or new specific symptoms, put time into planning your visit to your provider. Is this or that symptom worth the time? I found that smell, taste, bowel function, and balance are not worth the time to bring up because they are untreatable or, I know what I have to do about them. I spend time on things I can change and improve.
I am not there to pass time with my doctor. I am there to make my symptoms known, to inquire as to new symptoms, and to hear and get a corrective action plan. And like Methodist preachers, I usually have three points to make and take with me, three ideas I want answers for, and I plan those out in advance. I am not always effective and sometimes I ramble too much, but I try to be efficient and leave with a good feeling and answers when available. I learned this summer, after 14 years of this disease and after seeing a pediatric ophthalmologist, that convergence insufficiency or a weak eye is common in PD.
It’s right there in the Davis Phinney book, Every Victory Counts, 2021, 256). I have learned so much about a disease I thought I knew, but I had no idea. Just like I had no idea about the Battle for Peleliu and whether he was serious or joking when he said, “My breathing is good, it is just in and out, in and out.”
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Dan Stultz, M.D., is a retired physician who was diagnosed with Parkinson’s disease 14 years ago at the age of 57. He practiced internal medicine in San Angelo, Texas, for 28 years and became the President/CEO of Shannon Health System. He served as President /CEO of the Texas Hospital Association from 2007 to 2014 working on medical and health policy. He served as guest faculty at the Texas A&M Medical School in Round Rock and retired in 2016. He and Alice live in Georgetown, Texas.