Keeping up with research

Let’s say you hear about a new drug or a research trial. Or you attend a conference. After hearing a particularly inspiring speaker, you may want to make some changes to your routines or diet or whatever, or do some of your own investigating. How do you get started? It can be overwhelming, but there are many tools available to help you become better informed.

Image result for carry a small notebook

Carry a small notebook

One good habit is to make notes about any topics that catch your interest. Write as soon as you can, while the information is still fresh. Describe who told you or where you first heard about it. You can make a note online, or send yourself a text.

Keep an eye on media

Most online and broadcast stations keep an index of previous subjects. If there was a newly-published book being publicized, you can check a website such as FreshFiction.com. They review the top “buzzed” books of the week on shows like Good Morning America, Today Show, NPR and Public Radio programs, and many more.

If it was a magazine article, use your cellphone to take a photo of the article and also snap the cover of the magazine that shows the date or edition. If it isn’t a magazine that you have at hand, check with your library to see if they can get a copy of the article for you.

Capture what you know, however little

Did you overhear people talking, say at the gym, but didn’t quite catch the details? Try to capture what you do know, or what it sounded like, to the best of your ability. The important thing is to get down enough information so that you can follow up.

Evaluate research results

You’ll need to read carefully the research that interests you. Studies can be flawed, or worse, make claims that their own research doesn’t support. I like to ask if something passes the “Reasonable Test” — does it seem reasonable?

Be wary of any articles that make outrageous claims. You’ll want to read and think carefully about what’s being presented. Is the source legitimate? Would you trust them under different circumstances? If it’s a new medicine, has it gone through rigorous testing? Was the research done on a large enough group of people? Keep track of the skeptical questions you have. It’s easy to fall for a false promise when one is eager for a cure.

A journey through a thousand gates

Three years ago, I attended my first World Parkinson’s Congress (WPC) in Portland, Oregon. It went by in a blur. I had been recently diagnosed and I could barely take it in, but many things left an impression. Like the hallway displaying larger-than-life photographs of faces of people living with Parkinson’s. The wellness events filled with dancing and music. The plenaries and keynote speakers. Most of all, I remember the fellowship I felt from being surrounded by so many people with Parkinson’s.

Fast forward to the WPC 2019 in Kyoto. This time, I was giving a presentation with my dear friend Kat Hill that we titled “Resilience after a Diagnosis,” and we were traveling with a small community of friends from Portland. I knew that the trip would hold surprises that no amount of planning would cover — and that traveling was going to take some stamina.

The bright torii gates at the
Fushimi Inari shrine in Kyoto.

When we first started planning, a photograph of bright reddish gates — called torii — at the Fushimi Inari shrine in Kyoto caught Kat’s and my imaginations. The gates seem to shimmer, catching the sunlight and rippling as if they were fabric instead of wood. Kat and I used the image of the beautiful torii at the end of a short video called Just Imagine that we made for the WPC 19 video contest.

When we were young,” Kat and I expressed in the video, “we never imagined that we would travel the world” to attend an event like the WPC 19.

Once again, I came away from the conference with lasting impressions. I learned about current research on pluripotent stem cells, and the GI tract and gut microbiome, and I felt I had a valuable voice in the conversation as a person living with Parkinson’s Disease. I helped facilitate the well-received World Cafe conversations and exchanged ideas with people from Europe and Australia and Japan. One night, I went to hear sweet music performed by a Japanese folk singer, a Portland friend with Parkinson’s and her guitar-playing neurologist, and for the finale, the audience flooded the stage with appreciation.

WPC 19 changed my relationship with Parkinson’s Disease. I’m no longer just a person living with it. I’m eager to move into a larger advocacy role. The Congress opened doors for me and renewed my hope.

Like door ways, the torii gates are said to mark the transition from the mundane to the revered. Once the Congress was over, Kat and I wanted to visit the shrine that had so inspired us. Seeing the torii was to become a high point of a trip marked with many high points.

Even though we arrived early in the day, it wasn’t just us walking up the first steps at the Fushimi Inari shrine. There were hundreds and hundreds of visitors. We started climbing in lock-step with the crowd. There were young and old visitors, families, individuals, observant Buddhists, irreverent Americans. Occasionally someone posed for a photograph and the whole procession would stop.

The crowd around us.

Earlier, I had read that Fushimi Inari Shrine had 10,000 torii gates. We learned the hard way that there are actually over 32,000 torii gates and over 50 flights of stairs. Even when it appears that you have reached the top of the stairs, there are more to climb.

The lessons that I learned from all the unexpected stairs at the shrine were similar to the lessons I learned by attending the Congress. There’s so much we are trying to understand about Parkinson’s Disease. The more we learn through research and study, the more possibilities we have to reduce symptoms or discover a new medicine or — knock on wood, find a cure — and still there are new complications and surprises.

It took us more than two hours to reach the top of the Fushimi Inari Shrine. By then, the crowd had disappeared, leaving hardly anyone except Kat and me — two women with Parkinson’s — and our spouses and friends. We knew the path still held surprises and would likely tap all our energy. So we did what people do every day: we put one foot forward, and then the next. And we were amazed and thankful to do so.

Arigato gozaimasu (thank you for reading).

With purpose and meaning

I’ve come to believe that the reason that we care about resilience is that we want to be able to live a full and rich life. A life of purpose and meaning.

About Me

  • I’m a reference librarian. I love my job.
  • I’m a wife and a mom. My husband and I have a teenage son.
  • I live in Portland, Oregon.
  • I was diagnosed over five years ago at age 56 with Parkinsonism.
  • I am a fighter, a boxer and a dancer with Kimberly Berg’s Rebel Club.

I enjoy researching, whether it is about recent studies about Parkinson’s Disease, support and friendship, exercise, DNA genealogy, house history, the “old” days in Portland, or stem cell trials.

I’m new to blogging but I look forward to learning and sharing with you.

A thousand origami cranes on display at the 2019 World Parkinson Congress.