My views, the latest news from the WPC

PHOENIX, Ariz. – The World Parkinson Conference is in full swing.

Because not everyone can attend this sold-out mega-event, I’m blogging about important things I learn, interesting people I meet and cool things I see this week. All in not-quite-real time.

Check back often! Newest info will be at the bottom, so scroll down or click here to get there more quickly. I’ll keep up-to-date as best I can.

As always, I encourage your comments and questions below. Ready? Set. Go!

May 24, Day 1

Sunday, 12:15 p.m.
It’s great to be here

We’re checked into our downtown Phoenix hotel. Jon, the Unshakable Husband, and I are here for the four-day World Parkinson Congress, held every three years in different places for patients, care partners, doctors, researchers and advocates.

A conference center exterior shown in Phoenix.

The extraordinary lineup of speakers and sessions fills a 166-page program booklet.

I’m definitely jazzed.

Sunday, 3:50 p.m.
Paddle sports galore

The first day is called “Pre-Congress” and is basically and add-on for early bird attendees who pre-booked their activities. There are extra sessions to choose from, plus pickleball and ping pong tournaments. Jon and I couldn’t resist the chance to play pickleball, and we signed up for the tourney with a few dozen others.

A group of people with pickleball paddles pose for a picture.

Here’s where we met the Addisons, a delightful couple who traveled across an ocean from their home south of London. They are among 150 volunteers here to make things run smoothly for the nearly 4,000 conference participants.

The Addisons told me about a new sport spreading in Britain as fast as pickleball has in the U.S. It’s called “padel” and it’s like racquetball, except the walls are glass and the ceiling is open. It’s been disconcerting for Britain’s tennis crowd to see their courts being converted.

Sunday, 7:50 p.m.
A grand opening

An auditorium full of people got a little history of the WPC, which began 20 years ago with organizers saying, “I don’t know if this will work, but the community is ready.” That’s what WPC’s president, Roger Barker, said during the opening ceremony tonight. That first congress in 2006 brought together an unprecedented group and began awakening the world to a disease that was still in the shadows.

At the opening ceremony I learned I am among two-thirds of the 3,930 delegates attending WPC for the first time. We are from 62 countries.

The ceremony was both touching and entertaining. It included talks, stories, videos, song, dance, and virtual visits by several celebrities like Julie Andrews and Carol Burnett.

A group of men and women in red scarves sing on a stage.

Sunday, 8:30 p.m.
Feelin’ the love

I left the auditorium and followed as the audience walked en masse toward the exhibition hall, where we’d get a preview of products and services available to people with Parkinson’s (PwP).

Then the green-shirted volunteers gave us all a surprise. As we were corralled down the hallway, they lined up along both walls and clapped and cheered for us. It felt quite nice to be supported, like we were marathon runners or something.

In a way, we kind of are.

People clap as a crowd moves down a hallway.

Lots of people look at booths in a spacious room.

In the exhibition hall I found a few people I know through this blog and through social media; it was exciting to meet them in person.

Jon and I grabbed some snacks, which was more like a light dinner, and as I sat at one of the tables and started talking to others, I noticed something was different.

Typically, when dining out with others, I do my best to keep my leg from bouncing too much and I eat with my left, non-shaky hand to avoid the distraction of my symptoms. But here I make no effort to hide my erratic movements. Misery loves company? When in Rome? There must be a cliché for this!

May 25, Day 2

Monday, 6:45 a.m.
Keeping the routine

When I travel across time zones, it takes a day or two to switch my Parkinson’s meds to the new schedule. But that’s not the only routine that gets messed up. Exercise is harder to fit in when I’m busy and away from my neighborhood gym. And there was plenty discussions about healthy lifestyles at the WPC to remind me that movement is a priority.

So I forced myself out of bed and popped on down to my hotel’s fitness center. As usual, when the workout was done, the endorphins soared. Who needs dopamine to feel good all over?

Monday, a.m. and p.m.
Hike prep

I spent time in between everything else getting people signed up and organizing the hike we are hosting early tomorrow morning.

Looks like we’ll have a crowd!

There was a last-minute blitz of interest, and we easily will fill the van and other cars that will take this group of lovely people to Papago Park to breathe some fresh desert air — before tomorrow’s high hits 97 F.

Two women smile for the camera while one holds a book.

My friend Sara Whittingham held a book signing for her recently published “Oh Crap! It’s Parkinson’s.” We’d gotten to be online buddies over the past year, and finally we met in person! The book review I wrote is here.

Monday, 1:45 p.m.
Cells and imaging

I went to a couple of midday sessions. The first was on cell therapy. My biggest takeaway was the researcher’s comment about cell therapy and clinical trials, a sizzling hot topic right now. The trials that succeed are the ones that meet their end point. Those that don’t end up in the dustbins of history. It’s a huge gamble for pharma companies, which have to play their cards well.

The other session was a roundtable. I’ll point out the tables were rectangles, but they got the job done. At the table topic I chose to join, a participants heard a recognized expert get us up to date on PET and SPECT scans.

Monday, 4:15 p.m.
Back in the paddle

This time it was ping pong, and there was a tournament that I was qualified to enter because, well, I have a Parkinson’s diagnosis!

(No proof was required.)

According to an informational poster on the wall, early studies show ping pong can help PwP improve balance, coordination, visual and auditory processing, and decision making. And I have to add that it’s therapeutic in other ways; isn’t it satisfying to slam a high bouncer into the table just out of your opponent’s reach?

Many tables are set up for ping pong players.

Monday, 5:30 p.m.
Look ma, no driver!

Jon and I took a Waymo for the first time when it was time to pick up the rental van for tomorrow’s hike. It was a 10-minute ride of wonderment. I videoed the entire thing. The self-driving cars are all over Phoenix and some surrounding towns.