Saturday, October 6, 2012

What a Difference a Name Makes

I’m a frequent churchgoer with virtually no memory of most of the 15-minute sermons offered up each week to shed light on Christian life. Yet, not long ago a guest preacher spoke on the importance of naming: naming individuals, plants, foods, emotions, problems, and -- in the case of Bob’s current situation-- diseases. His point was that a name fixed the person or thing in our memories; it gave it definition and specificity. Changing the name of Bob’s condition from Parkinson’s Disease to Progressive Supraneural Palsy (PSP), as happened last week, has caused us to wrap our minds around a new reality. Via this letter, I want to bring you along with us for what may be a difficult and challenging ride. Fifteen months ago Bob was diagnosed with Parkinson’s disease, a chronic progressive neurological disease caused by a decrease in dopamine production, and marked by muscle tremors, rigidity, slowness of movement, impaired balance, and a shuffling gait. The doctor noted that Bob did “not have a ready smile” and he continually rubbed his thumb and forefinger together, two signs of Parkinson’s. Because Bob could remember falling off a bike in Rehoboth several years ago and being fearful of stepping across stones in a creek on a hike with Keith’s family on his 72nd birthday, she believed his decline would be relatively slow. She prescribed Sinemet, a dopamine supplement, and regular repetitive exercise, and we adjusted to a Bob going through life in slower motion. Earlier this summer, Bob had a chance encounter with a man with Parkinson’s who suggested he see Dr. Cannard, a “movement specialist” at Walter Reed Naval Medical Center. It took several months to get an appointment during time which Bob’s movements slowed, his voice lowered, and periods of confusion became apparent. He could not always remember how to drive from point A to point B, nor could he keep track of television characters or identify famous people (like Paul McCartney). Other tasks, such a completing tax forms and scaling measurements for his train set, became difficult and stressful. We spent two hours with Dr. Cannard on September 10. He asked numerous questions about falls, sleep patterns, eating habits, reading and comprehension issues, memory problems, and personality changes. He tested Bob’s physical responses, tapping his feet and knees to see if they responded (one foot did not) and asked him to clap his hands three times, which he could not do. He clapped once or four times, but not three. Dr. Cannard spent a lot of time examining his eyes and asked another doctor to watch Bob look at a wide ribbon of black and white bands and tell him the colors. Somewhere in this two-hour meeting, he said, in an oft-handed way, that he didn’t agree with the Parkinson’s diagnosis; he thought it was “PSP” and garbled the words Progressive Supraneural Palsy when I asked what that meant. He prescribed a battery of psychological tests and noted that a definite diagnosis would be made when Bob went off the Sinemet which helps people with Parkinson’s but does not affect people with PSP. My Google research shows that PSP is a degenerative brain disease that affects the nerve cells that control walking, balance, mobility, vision, speech, and swallowing. It is not uncommon for people to experience a loss of interest in ordinarily pleasurable activities, to show signs of dementia and memory loss, and to have weakened movements of the eyes, mouth, tongue and throat. Many require significant assistance as the disease progresses, and life span appears to be 5-7 years after onset although PSP itself is not a fatal disease. As you might imagine, this is a lot for us to grasp. Based on the strong probability that Bob has PSP, we have concluded that Bob is more comfortable at home doing routine chores -- walking the dog, doing the laundry, mowing the lawn -- than he is traveling the globe; that our family, friends, neighbors and St. Margaret’s community are increasingly important as his circle of people and interests narrow; and that taking on more complex chores -- monitoring the calendar, planning events, and paying the bills -- are now in my court. His eldest son Bobby was here this week and noticed that his dad moved slowly and was quieter than usual. As the person preached, the naming of the disease, Progressive Supraneural Palsy, is helping us to recognize the limitations it imposes and encouraging us to work within its constraints. While challenging, we are buoyed by the excellent -- and free -- medical care we have, our faith that God will not give us more than we can handle, and by the amazingly loving and attentive village that surrounds us. Thank you for reading and stay tuned as I promise to continue to write to you about this new chapter in our lives.