Important things I learned at a Parkinson’s fair
I went to a fair, and my head is spinning with info about Parkinson’s disease. There’s a lot of good stuff out there to know about.
To be clear, these fairs are the kind with booths and table displays, not cows and Tilt-A-Whirls. They are designed to show the latest and greatest happenings in a certain field.
The Parkinson’s fair was part of a larger conference hosted by the movement disorders clinic where I’m a patient. What I learned about Parkinson’s was well worth giving up a Saturday morning for.
My own takeaways from the Parkinson’s fair include emerging therapies to try, clinical trials to join, and lots of meds to “ask your doctor” about.
Sadly, I couldn’t take away the raffle prize: a pair of urban-style trekking poles.
But I did collect a bag full of goodies.
In my quest to learn more about Parkinson’s, here are the table displays that caught my attention:
Medication I’m most excited about
Hot off its FDA approval was a drug that has been shown to work quickly and reduce the “off” times that happen with levodopa. “Off” times are when symptoms return before the next dose. The new medication is designed to gradually release levodopa into the gut where it is best absorbed.
It’s called Crexont, which doesn’t exactly roll off the tongue. Name aside, this drug could be a relief as I experience more off times.
Researchers continue to seek treatments that improve on levodopa, but it has remained the “gold standard” for Parkinson’s since the 1960s.
As with any drug, there’s lots of fine print. Basically, Crexont reduces symptoms like tremor or stiffness through its delivery method. It’s a capsule with a portion of the granules that are for immediate release, and the rest of them for extended release.
Knowing what medications are available is a key part of learning about Parkinson’s. While I don’t know what my future will bring, I’m glad there are more options out there for dealing with symptoms.
Update: Shortly after the fair weekend, another new medication therapy received FDA approval. Called VYALEV, it is a subcutaneous levadopa 24/7 pump the reduces off times for people living with a more advanced stage of Parkinson’s disease.
Love that push for exercise
There were a few tables with a focus on exercise – as there should be! It’s the only proven therapy that actually SLOWS the progression of Parkinson’s, making it vital for everyone with this disease start moving.
Which brings me to “Moving Day.” The Parkinson’s Foundation’s table had details about these fund-raising walks held throughout the year in many cities. More than raising money, the events raise awareness about Parkinson’s and embrace the power of exercise for those living with the disease. See if there’s one in your area.
To DBS or not to DBS
I stopped by the Metronic table, for two reasons. First, Medtronic is one of leading companies that provides systems used for deep brain stimulation, a therapy I may consider in the future. Second, I have a relative in Minnesota who works for them and who keeps me up-to-date on what’s happening with improvements to their product. So I basically dropped by to say hi to the rep and to pick up literature. And a piece of candy.
What’s this ‘Urban Poling’?
Gosh, that was a nice set of trekking poles that someone else won in the raffle. As I ogled them before the drawing, I got to thinking about this form of outdoor exercise that a lot of people with Parkinson’s have taken up recently. I got some info, and I’m predicting there will be a blog post on this site about urban poling in the near future.
Clinical trials I could join
The hosts of the conference had their own table set up to entice patients to join clinical trials at the hospital. One investigator had her study set up and ready for volunteers. So I volunteered on the spot! I was given a small jar and shown about 20 items like cotton balls, clips, buttons, and pieces of paper. The goal was to discover how people feel about their experience with Parkinson’s. All I had to do was choose different items representing my feelings to fill the jar. I’m not certain where the study is going after that; hopefully I’ll find out.
Refreshments table
I definitely stopped here, and I have to say, it wasn’t all healthy food being offered. There were some granola bars but also candy to take. I’m a firm believer that it’s OK to indulge responsibly in chocolate or other edible temptations.
Knowlege is power
Since every person’s Parkinson’s experience is different from anyone else’s, it’s up to us to get informed. We who live with Parkinson’s must advocate for ourselves as we consult with the doc. The more you understand about your disease, the more successful your treatments can be.
So If you hear about a Parkinson’s conference or fair that you can attend, do it!
So cool to learn about the new findings and treatments for Parkinson’s. Too bad you didn’t win those trekking polls! Although, from what I’ve seen, you seem to be trekking just fine without them 🙂
You’re right, so far I’m still not using poles for a lot of my hikes. “So far.” A phrase that carries both hope and dread.
Awesome conference! Glad you have that resource nearby for you. Would love to know about DBS more!
Indeed, I’m lucky to live close to such leading-edge resources. A lot of people with Parkinson’s (PWP) don’t have that.
What a great resource. I’m so proud of your tenacious spirit. Onward and forward.
Thank you, Bryan. That encouragement means a lot.
Wow! How often do fairs like this happen?
This was the 2nd annual conference, and the entire thing was free, including lunch. This year they had to limit registration due to space. 🙁
All of the free merch! indeed reminds me of our state fair…what a great place to find new information and resources. (Did you take a Mars bar? I don’t think I’ve had one of those since elementary school…yum.) I love to read these posts Colleen!
No Mars bar. TBH, that photo is a stand-in for the one I didn’t take at the Parkinson’s fair. Thanks for reading!