I’ve blogged quite a few times about the pros and cons of being on Sinemet (carbidopa/levodopa). Bingo! Bingo! Bingo! Bingo! Bingo! Bingo!
My prose about the pros is that when the medicine is working, you can do just about anything with your body. For example, you can shout “Supercalifragilisticexpialidocious!” and dance like Dick Van Dyke in this clip from Mary Poppins:
Thank you, Dick! If you ever need a stand-in, I’m your man! Julie Andrews, you’re great, too!
The main problem with Sinemet is that you must schedule when you take the pills so you don’t experience a downtime. You need to take the pills on an empty stomach, especially avoiding protein, which blocks the medicine’s absorption in your intestines. In my case, I need to take a pill every three hours, which means my typical day is highly regulated between eating food and eating my medicine.
This is not always easy, as I learned on Thanksgiving. My husband and I joined my brother, sister-in-law and two nieces for Thanksgiving dinner at the Harvard Club in New York. It was fabulous – but a long meal. I took a round of Sinemet (and Ropinerole) at 11:30, a half hour before we started the feast, and was fine. But the meal stretched from noon until 3:00. Because it was so heavy with protein, I couldn’t take my next dose of Sinemet until an hour after we were finished.
We left the Harvard Club and started walking on Fifth Avenue, as it was a warm and delightful day. Then my leg gave out. It just wouldn’t work. My husband and I had to say goodbye to the rest of my family and scurry/hobble over to Grand Central Station to take the train home. On the way, I finally popped my next round of pills, and by the time we got off the train I was fine.
There’s a new drug delivery system that some Parkies have started using: Duopa. It delivers a continual flow of carbidopa/levodopa into the small intestine through a tube that’s connected to a contraption you wear around your waist or draped over your shoulder. The tube enters your intestine through a small incision in your abdomen. According to one user in Vermont, the results are terrific: she no longer experiences any down time. She’s back to driving a car. She’s ecstatic. “I call it my Cinderella medicine,” she says, “because it brings me back to me.”
This sounds fantastic, but I’m not really ready for it. How would I swim in the town pool with this contraption strapped to my body? Or work out at the gym, do yoga, etc., etc., etc.?
Which leads me to a conclusion that my mind’s been mulling recently: I have to dedicate myself more rigorously to working out, in order to keep Parkinson’s symptoms at bay. I’ve learned, through writing my blog posts and through personal experience, that physical exercise is the best way for me to combat the disease. Bingo! Bingo! Bingo! Bingo! Bingo! Bingo! Bingo! Bingo! Bingo!
So let’s watch that Dick Van Dyke clip again, then head to the gym!
By the way, Duopa was developed by AbbVie, whose friendly representatives I met recently at the Michael J Fox Foundation research roundtable. Here’s the patient website for Duopa, and here’s what the Fox Foundation says about it.
In general, I think Duopa is a great step forward for many Parkies – because it allows them to take one step forward then another step forward all day long.
But in my case, I’ll continue to work out. Work out. Work out!
Above video: Me racing 100 yards a few years ago, after I started showing PD symptoms and was still swimming. I’m in the orange cap. I’m the last swimmer up on the starting blocks (Parkie slowness), but second to finish the heat!
Above video: Me racing 50 yards the same day. I’m still in the orange cap. Last up on the starting blocks (Parkie slowness again!), but first to finish the heat!
