From October 1 – 4, 2013, I attended the 3rd World Parkinson Congress in Montreal, Quebec, Canada. I felt privileged to be among the group of 3,335 people in attendance including neuroscientists, clinicians, allied health professionals, nurses, policy-makers, people living with Parkinson’s (PD), their care partners and families, and others from 70 countries around the globe. All were committed to helping those with PD improve their quality of their lives with the ultimate goal of finding a cure for PD.
At first I was frightened when I observed 733 people living with PD (22% of the attendees) who moved around the Congress with their shaky limbs and slow and unsteady gait. Five of the attendees even brought their own service dogs from home to assist them in walking. I was discouraged by the increasing number of people being diagnosed with and living with PD.
At some point at the Congress, my focus and feelings shifted away from being discouraged and toward being hopeful and inspired.
I was in awe of those who were courageously living with this devastating disease with as much dignity as they could muster.
I was tearful as I viewed some of the poignant stories portrayed in the 113 submitted videos. I realized that I faced similar struggles in managing my PD.
I was delighted to be educated by world-renowned PD experts in plenary sessions, workshops, roundtables, and discussions on the most recent and cutting edge scientific and clinical research.
I read a sampling of the 600 scientific and living with PD posters that were submitted by the registrants. I was impressed with the knowledge and information contained in the posters.
It was fun to see those in attendance join in activities such as singing, dancing, yoga, exercise classes and even boxing and playing racquetball. Their playfulness created an atmosphere of normalcy despite having a disease that often feels “not too normal.”
I found myself needing some help during the Congress. A month earlier I had vocal cord surgery. Despite the “promise” from my surgeon that my voice would be improved by the time I was in Montreal, my voice remained hoarse, strained and squeaky. It was difficult to get the words out. Fortunately, at the conference I roomed with my dear friend, Mary Spremulli, a speech-language pathologist from Florida who works with those with PD and is also the creator of Voice Aerobics™ (an exercise program focusing on breath support, posture and vocal function exercises for improvement of vocal performance). Mary came to the rescue and provided some practical tips to assist me with my strangled voice. She also spoke on my behalf when I didn’t have a voice. I am grateful for Mary’s friendship, kindness and competence.
I appreciated the organizers of the Congress and those in attendance who were committed to improving the quality of life of those living with PD while they moved closer to finding a cure. They helped me shift my focus from being discouraged to being hopeful and inspired.
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