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Katherine Decker among first
FDA Patient Consultants for Parkinson's disease

On the morning of July 1, 2005, I was answering my e-mail when the telephone rang. The caller was Captain David Banks, Office of Special Health Issues in the Food and Drug Administration. He was congratulating me for having been chosen as one of three, first-time patient consultants for the Parkinson’s group.

For the first time in my life, I was at a loss for words. A feeling of calmness settled over me. As Dr. Banks explained the training program, I focused on his every word.

As we discussed the details of returning forms, planning for training, and assuming the responsibilities of the position, I felt the rush of excitement through my body that is waging a war against a degenerative disease, enduring the bombardment of drugs and the ravages of side effects brought on by medication. Question after question raced through my alert mind, refusing to let the disease take hold. I knew we were in for challenging times.

Plans were made to travel Rockville, Maryland for a half day, initial in-service training. As I hung up the telephone, my first thought was, “Did I just receive a call telling me I would be a patient consultant for Parkinson’s?” Then reality set in and I started wondering, “What kind of job will I do?” “Who are the other consultants?” Just how involved will the work be?” The final revelation was that we were trail blazers.

Through e-mail and eight training telephone conferences, I met my fellow patient consultants: David Ejer and Marshall Loeb. We quickly developed mutual respect and consideration for each other, and established a productive working relationship.

My educational background and work experiences are proving to be very helpful in developing the role of a patient consultant. I hold a registered professional nurse license, a postgraduate teaching certificate, and a diagnosis of Parkinson’s disease. My experiences as nurse include caring for patients during the medical and surgical nursing rotations. My experiences as an educator include administration, theoretical and clinical teaching, supervision, and curriculum development.

The tables were turned when I was diagnosed with idiopathic unilateral (right side) Parkinson disease by Dr. Jerrold Vitek at Emory University Clinic. I was now the patient, not the nurse, and feelings of despair and hopelessness, and a fear of the unknown now belonged to me. I dealt with these, but spent eight years adjusting the dosages and timing of my medicines to quiet the tremors that are the visible hallmark of Parkinson’s symptoms.

Then my neurologist, Dr Marcus Rice, asked if I had considered deep brain stimulation. A year later, Dr. Grant Skidmore and Dr. David Waters inserted the stimulator in the left side of my brain. I returned to work for a year, but decided to retire after 35 years of teaching. My husband and I joined our local support group and are active members.

We are excited and are prepared to be the voice of Parkinson patients in the Food and Drug Administration hearings.

Copyright© 2012 Pipeline Project

All rights reserved. Revised: 01/26/12.