At the World Parkinson’s Congress, I felt like a prospector looking for gold. Hoping to find riches, and guided by the maps of others, I quickly struck gold. The awe is still with me.
I found my friend Elaine Sulzberger’s hand knit square in the Parkinson’s Quilt exhibit. Elaine knit a square in 2009, not long after being diagnosed with Parkinson’s. Her patch was included with the stitchery of more than 600 quilters in the Parkinson’s community. The quilt exhibit, shown in its entirety at WPC, is a project of the Parkinson’s Disease Foundation. It reminded me of Dave Iverson‘s description in a morning plenary “PD is a family condition.”
Speaking of Parkinson’s Disease Foundation (PDF), Ronnie Tadaro, VP, National Programs, was the lead on several posters including P19.13, The PDF Women and PD Initiative: identifying and addressing unmet needs. A cause dear to our hearts!
Cure Parkinson’s Trust co-founder Tom Isaacs from the UK gave a humorous speech on the day-to-day reality of living with dyskinesia. His poignant description of his “busy mind” inspired everyone and demonstrated why he was honored with a WPC Award for Distinguished Contribution to the Parkinson Community.
Psychosis and hallucinations in PD were explained by renowned experts such as Stanley Fahn who included a tribute to the late Oliver Sacks in his speech. Fahn, a neurologist specializing in Parkinson’s, was the first doctor to diagnose Muhammed Ali’s condition.
Fahn spoke before the opening ceremony where Maryum “May May” Ali recited her poem with her noteable quote about her dad being a “pearl embedded in the oyster of life.”
Updates on brain circuits in PD and DBS hit home with people who have had DBS. Helen Mayberg (USA) explained the procedure, and Andres Lozano (Canada) tagged DBS as “underutilized” with 150,000 DBS patients and 700 DBS centers. Lozano also introduced focused ultrasound in neurosurgery as “safer, less invasive” than traditional DBS.
As a DBS advocate, I often share my experience with others in the decision-making process. Michael Okun added important pieces to the process for me. He spoke about the importance of examining expectations before deciding on DBS. Who knew that the word expectation could have such consequences after a procedure! In DBS, it is a word that prospective patients and surgeons would do well to examine as they evaluate their benefit/risk list.
A presentation on a similar subject by the Keck Medicine of USC was in poster P32.07 Patient expectations and outcome after DBS: 24-month results by Nasrin Esnaashari, Steffi Chen, Joanna Liang, Christopher Liao, Mark Liker, Jennifer Hui, and Daniel Togasaki.
Each day of the conference included at least a couple dozen choices to make on speakers and subjects. Attendees had to make tough decisions– who knew Parkinson’s disease was so content-heavy!
The level of sessions varied widely from minimal scientific background required, to high-level scientific sessions. Just to test my brain, I tried out a super scientific session on Regulation of ATP13A2 via PHD2-HIF1 alpha signaling is critical for cellular iron homeostatis: Implications for Parkinson’s disease. The speaker was Julie Andersen (USA) who will be one of the speakers at our Women & PD: What’s New? event. She warned the audience that the talk was scientific, and she was right!
Steve Finkbeiner (USA) from Gladstone Institutes gave a fascinating talk about his lab’s successes in disease modeling using iPS cells. “We used to push mice…” he mused, when he described how IPS research is done in a dish.
Humor was an important element of the conference vibe, and participants did a great job of keeping attendees laughing. Ron Pfeiffer included a slide of yummy bacon maple donuts at Voodoo Donuts in his presentation on gastrointestinal challenges.
Tom Isaacs was noticed on the floor of the center with a group of people lying on their backs, facing the world’s largest swinging Foucault Pendulum. The group event might have been in a fear-facing exercise, for the ball of the pendulum looked mighty heavy!
Dan Gold gave an excellent presentation on vision. According to his stats, 78% of PD patients have a visual symptom. Loss of dopamine is also in the retina, and can cause blurriness, unclear images, a sensation that sand is in the eye, and difficulty seeing in twilight, dryness, and more. People with Parkinson’s who have vision symptoms might want to look for a neuro opthamologist and use tear lubricant! Check out vision changes by the Parkinson’s Disease Foundation (now known as the Parkinson’s Foundation).
A swallowing and cough presentation by Michelle Ciucci (USA) offered enlightenment on coughing and eating. She explained that the more severe your PD is, the more trouble you may have with swallowing. Do you cough when you eat? Have you had pneumonia? These could be some signs of swallowing symptoms related to PD.
Ciucci suggests that you tuck your chin in while swallowing, for a better throat position, make food easier to swallow by making smaller pieces, and practice good oral hygiene. You can find more information by Ciucci here: http://www.pdf.org/en/parkinson_briefing_swallowing_dental
I also met Peter Schmidt at a roundtable where he discussed technology with a dozen attendees. Schmidt, Senior VP, and Chief Mission Officer at National Parkinson Foundation (now Parkinson’s Foundation), seems to know every name and every person in the technology world who has a connection with Parkinson’s. He leads the largest clinical study of Parkinson’s ever conducted and is active in research on diverse clinical areas in Parkinson’s disease. Definitely cutting-edge!
Leilani Pearl, VP, Marketing & Communications at National Parkinson Foundation sat next to me at a reception hosted by the newly merged Parkinson’s Foundation. It seemed like the perfect opportunity to show her a look at our new Women & PD: What’s New? flyer and program.
Networking was a huge part of the conference experience. Several women at Parkinson’s Women Support traveled to the conference and we saw so many familiar faces including doctors, scientists, and friends. The experience of WPC for each of us was a unique, and impactful event that we won’t forget.
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen