Suketu M. Khandhar, M.D. Medical Director, Movement Disorders Program, Kaiser Permanente
For the past two years, “Mike”, a construction foreman, had noted occasional difficulty using his right hand. He reluctantly saw his primary care physician who ordered x-rays and routine blood work. weeks passed until he learned that his tests were normal.
He sought another opinion, this time by an orthopedic surgeon, who reassured him that the arm and hand were not fractured. He was referred to a neurologist who tested his strength and ordered an MRI of the brain. The imaging was normal and Mike was told that he hadn’t had a stroke. Months went by, and now it was noticeable that he did not swing his right arm and he began to develop a little tremor. Coworkers noticed. Mike began to feel anxious and worried whether his job was at risk. He saw another neurologist who, within ten minutes, gave Mike a diagnosis of Parkinson’s disease (PD), a prescription and told him to return in six months for a follow up. As you can imagine, Mike left the neurologist’s office in a daze and feeling vulnerable. This scenario is certainly not the one I feel is optimal for patient care but is one that is all too common. Ideally, the following considerations should immediately come into play at the first diagnosis of PD. Mike needs to be empowered so that he, his family and his medical team can best manage his disease.
Information - At the time of diagnosis, Mike’s neurologist should explain the underlying pathology of PD and give Mike a clear understanding of how this relates to his PD symptoms. This may include what the expected course / trajectory of the disease is as it pertains to his particular situation. Mike –and his family - may need time to develop their own questions for the doctor. The neurologist and the care team should be available to answer those questions (either by office visit, telephone, e-mail or other form of telemedicine).
Plan of Care - The Plan of Care is a dynamic guide for the patient and the care team. Mike’s medical care team should include his primary care physician, neurologist, physical therapist and pharmacist. To make the most of his medical treatment plan, Mike needs to understand all of his medications and how they affect him as well as how to report side effects that may occur, or if his condition changes. Conversations with members of his care team are essential in this phase of the process. There are many therapies and specialty care treatments that may be appropriate for Mike over time.
Commitment - Mike must take ownership of his diagnosis and well-being to achieve the quality of life he desires. Personally, I strongly encourage patients to lead an active lifestyle (to include exercise and social activities). I would introduce Mike to PD advocacy groups, like the Parkinson Association of Northern California, in an effort to lead him to a supportive “community”, but Mike must be the one to take the initiative to engage in those resources. Further, I expect my patients to be knowledgeable and active participants in maintaining their overall health. These are the things Mike, or anyone with a new diagnosis of PD, will need to be successful during their journey with Parkinson’s disease.
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