There is always something comforting about walking into a room and spotting another Parkie, but to walk into a hotel filled with your peeps is like a dream. Parkinson’s can feel like you are going into battle alone with nobody to watch your back. So when I got to Portland for the World Parkinson Congress (WPC) and stepped in the lobby of the hotel, as outrageous as it sounds, I was ecstatic to see the tremors, rigidity and slowness all around me. Come as you are. With whatever Parkinson’s has decided to throw my way, I knew I was in good company.
The following morning, I was honored to be invited to the “Leadership Forum: Building a global Parkinson’s community”, where the leaders in the PD world come together and tackle the many challenges faced when trying to get resources out to parts of the world that have no help. I was talking with a woman who was at the conference representing Alberta, Canada. In some parts of Alberta, there is only one Neurologist in the area, and some people have to drive 5 hours just to be seen. Then there is the story of a couple living in a remote area when the husband gets diagnosed with PD, but the wife doesn’t know how to drive. How do they receive medical care?
Sometimes I must be reminded of how blessed I am to have access to healthcare and the choice to have Deep Brain Stimulation surgery early into my diagnosis. These conferences not only humble me, but they inspire me to take the knowledge I have gain and share it with others.
After a long day of traveling and conferences, I had the opportunity to take an aerial tram up to the Oregon Health & Science University and rub elbows with the leaders in the Parkinson’s community. At the reception, (side note: the BEST sirloin sliders in the universe… Yes, I ate like 10… I perfected the art of sneaking a bite without anyone noticing) I got to meet all my fellow WPC bloggers, ambassadors and some of the rock stars in the PD world. I took a moment just to take it in, I mean seriously, look where I was and it was all due to the fact that I had the honor of being diagnosed with Parkinson’s disease!
Fast forward to Tuesday, the pre-conference… I feel like there should be a sound effect. All delegates get to choose 1 out of 3 courses offered, depending on your knowledge or personal interest. I picked “Advanced in Scientific Research and Treatments” because it was about the struggles that I have, “Dyskinesia-An ever moving story”. They had unbelievable speakers, starting with Tom Isaacs (UK), who shared his personal journey with Dyskinesia and Un Kang (USA) who discussed the various clinical forms of Dyskinesia. Although the speakers were phenomenal, as always at the WPC, one presentation hit home. The speaker was Rajesh Pahwa (USA) and he discussed “How do we treat this unmet need now and in the future.”
Dr. Pahwa reports:
-Up to 90% of Parkies will get Dyskinesia within 10 years of having the disease.
-The number of medications of FDA approved “off” time is 10
-But the number of medications FDA approved for dyskinesia is 0.
This leads to the Parkie having to choose the lesser of two evils. Would you rather have rigidity and slowness of movement or dyskinesia? Almost every Parkie faced with this question will answer, dyskinesia.. As Dr. Pahwa describes, “treating dyskinesia is an art”. Finding the perfect cocktail of medications is key. This can include a melting pot of various drugs such as dopamine agonists, L-dopa, SSRI’s, MAO-B inhibitors or benzodiazepines just to name a few. To make this perfect cocktail even harder to whip up, is that seeing that PD is a progressive disease, your drink might need a little something added to it or replaced to make it perfect… maybe up I can add one of those cool paper umbrellas in that Parkie cocktail?
Following an afternoon of intriguing speakers, I had to sneak back to my hotel room to take a quick cat nap and then I met my parents who flew in to join the festivities. We took the street car back to the Convention Center, and that is when the magnitude of the WPC hits us. With over 4,400 delegates and 67 countries represented, there was so much positive energy, it felt as if the Convention center could just lift off the ground and float away.
The opening ceremony and welcome reception was the bomb! Can I say that? Brian Grant, a professional athlete who played 12 years in the NBA, who was diagnosed with Parkinson’s disease at age 36 kicked off the night and Maryum “May May” Ali who is Muhammad Ali’s daughter concluded the evening. With inspired hearts and tired bodies, we all went to our hotels, motels and airbnb’s to prepare for the start of a life changing experience. As for me, I feel asleep with my makeup on, television glowing and name badge still lassoed around my neck. It wasn’t until the following morning when I looked in the mirror and caught a glimpse of my smeared mascara and rowdy hair that I knew that I had slept face down on my pillow in a Parkie coma.
Well my friends, that is it for this post. Stayed tuned for more adventures from the WPC.