Our Parkinson’s Disease support group met Thursday with the purpose of setting the group’s agenda for the coming 12 months. It turned out to be much more of a revelation about the nature of the disease than I had expected.
I asked the group of 25 PD patients and caregivers for a few minutes to answer the question I would address at an international neurology conference in Denver next month. The question was this: “What were you told about your disease at the time of diagnosis.” I went around the table asking each that question.
The universal answer was nothing, nada, not a thing. All that was offered were pills and return in three months or so. Next I asked: “What did you do with your news and how did you go about learning about the disease?”
For most, the next step was Googling the disease. The funny answer came from the gentleman who said quietly: “I told my wife.” Next I asked how successful the Internet searches were for reliable and understandable information. Most answers were variants of “confusing, mystifying, terrifying and unintelligible.”
I had asked the same questions of three other Tampa-area support groups in recent months. The answers were the same.
The conversation Thursday then began in small groups about what the members wanted the support group to do for them. The desires ranged from hearing from experts on various aspects of PD, to share experiences, have social occasions, feel less alone. In short, they were seeking to find understanding and meaning in their mystifying circumstances. Their unknowing produced fear.
The cast of characters in the room epitomized the range of symptoms that can occur in this poorly understood disease. There was the retired executive who struggled to teach us his understanding of how you go about writing a mission statement. There was the young-onset victim who had a little in common with the symptoms plaguing her 70-and-80 something compatriots. One of those 80-year-olds was a vibrant information seeker whose primary interest was knowing what books she could read to fill in gaps in her already considerable knowledge. Then there was the youthful, retired pharmacist who knew so much about drug interactions that she would be an expert presenter to the group in a few months.
The showstopper came when the middle-aged photographer, who until that day was expert in using Photoshop on his computer, said plaintively: “I woke up this morning, and I couldn’t remember anything about operating my computer or even how to turn it on.” There was a collective gasp.
I suddenly had an answer to the question bothering me so much: Why do doctors not tell patients anything of substance at diagnosis or hand them any publication to read so they could start understanding their condition — a booklet or similar that told them about the further information resources available on the websites of such reputable and reliable organizations as the Parkinson’s Disease Foundation, National Parkinson Foundation, Michael J. Fox Foundation and Davis Phinney Foundation. (See also my Must Read Links page on this site.)
The best I could get at my diagnosis when I pressed the question of “what does this mean and what do I do about it” was hard-eyed pragmatism: “You are 75 years old and something else will kill you before Parkinson’s does.” I was not comforted or enlightened.
Parkinson’s is such an enigma. Some can live with it 30 years or more and have few disabling symptoms. Others, like a Rotary colleague of mine, was dead within months of a galloping dementia. The cause of PD remains unknown. Symptoms are outlandishly diverse: loss of smell, frozen shoulder, tremor, stiffness, fatigue, depression, cognitive decline, anxiety, sleep disorders, so on and so on.
So what, then, can any doctor, even the most highly trained neurologist or mobility disorder specialist, really say to patients about their future. The physicians can prescribe and and modify drugs types and dosages. They can suggest exercise in a general way. They can suggest looking after your diet. They can point you to a support group. What they can’t do is give you a meaningful answer to the question of what’s going to happen to me in the long run. Bed-ridden? Demented?
I finally had my answer to why patients are told so little at, and even after, diagnosis. I checked my theory with a physician friend. He said I was right. Doctors don’t want to hold out false hope to people or provide them misinformation. They too are mostly in the dark about this mysterious disease.
I now had further proof for the theory coming out of the palliative care movement. The patient, out of necessity, must form and become the captain of a team that provides the type of support needed at each stage of the disease. That team would include the neurologist, psychologist, spiritual advisor, legal advisor and various therapists, RT, OT, etc. In that way, the person with Parkinson’s is not a victim but a vigorous advocate and a central figure in the provision of needed care. Victims cannot possibly have hope and hope is the vital ingredient in living a full, engaged communion with family, friends, community and God in this disease and decline.
My understandings about the silence surrounding Parkinson’s came the same evening as I returned to reading an important book about spirituality and personal growth. Its title is “Falling Upward”: A Spirituality for the Two Halves of Life. The author is theologian Richard Rohr, whose work I can’t recommend highly enough.
Last evening I ran across this passage that affected me deeply. “To hold the full mystery of life is always to endure its other half, which is the equal mystery of death and doubt. To know anything fully is always to hold that part of it which is still mysterious and unknowable.” At another place, Rohr says words applicable to diseases like Parkinson’s. “First there is the fall, and then we recover from this fall. Both are the mystery of God.”
Rohr also brought me back to a psychiatrist whose books I admired in graduate school, Eric Ericson. Ericson wrote about the stages of all of our lives, the last being the generative one. Many of us with Parkinson’s are or should be at this stage given our advanced age. A generative person is one …”Who is eager and able to generate life from his or her own abundance and for the benefit of the following generations,” said Ericson, “because such people have built a good container, they are able to contain more and more truth, more and more neighbors, more and broader vision, more and more of a mysterious and outpouring God.”
Parkinson’s has become for me both a medical and spiritual journey. I have no other choice but to take it and welcome it.
Florida Society of News Editors
Parkinson’s Disease Foundation