I have. Many of us with PD tend to focus on the disease way more than we should instead of just living our lives. We get compulsive. We constantly scan the internet for the latest medical news hoping for that long promised cure. We read dozens of blogs with many different view points until we are so confused that we don’t know what to believe. We order snake oil cures from dubious websites, hoping that will make us “normal” again. Exercise is medicine we are told, so we exercise and exercise. We box, we ride bikes, pole walk, yoga and more, but sometimes we just hurt afterwards. Why? Probably because we overdid it. With PD, we often forget our limitations. I admit that I am guilty on all counts, except maybe for the snake oil cures.

Are the medications we take the problem?

We are told that it could be our medications. Blogger Frank Church wrote earlier this week about weaning off of dopamine agonist Ropinerole (Requip)* because it has been associated with Impulse Control Disorders (ICD’s). He had read that men over 70 years of age had a more difficult time with ICDs while on dopamine agonists. At my last visit, my MDS started reducing my dose of Ropinerole because of the same concerns for women over 70 (although I am a couple of years away). Mr. Twitchy often complains that I spend too much time on my computer or iPad. It is hard for me to sit and watch tv without doing something simultaneously like playing solitaire on my iPad. This past year, because we are home binge watching tv together every night, it seems to have gotten worse. I have heard the same things from many others with PD. We really have had too much time at home that needs to be filled with something. So we shop too much on the internet, take too many classes on zoom, and play too many games, etc.

I have noticed over the years that so many People with Parkinson’s (PwP’s) seem driven to do things they never would have done before. Apparently it is often a side effect of our medications. Frank mentions that he felt wired all the time. I have to admit that I often feel the same way, as I am sure many of you do. It is hard to slow down when your brain doesn’t. Have you ever tried to meditate when your mind is racing? The experts tell us that meditating will help us relax. Really?

Bringing some balance back into our lives

So here we are, exercising and surfing the internet for hours each day, forgetting that there is a life beyond Parkinson’s. How do we stop fixating on PD and live our lives?

The good news is that life is starting to return to normal for many of us Post-Covid. We can spend much more time out of our homes with friends and family. We may even be able to go to the theater, movies, sporting events and more. We need to get out of our PD cocoons.

The best thing we can do right now is to start doing the things we enjoyed before COVID that have nothing to do with PD. Mr. Twitchy and I went with friends to Louisville, Kentucky last weekend to go to the Kentucky Derby. It felt so good to go and do something that was just fun. No therapy, no PD exercise classes, no PD anywhere on the schedule. We had a great time and it definitely boosted our morale.

Not everyone can get away like that, or wants to yet. But there are things you can do to reduce the time you spend on feeding your PD.

A few things you might try

1. Get out of your house! I know too many people who have not left their homes since this whole thing started last year. If you are afraid to go out there isn’t much else to do but focus on your Parkinson’s. You need to fight the urge to stay home and get back out into the world
2. Get out of your house part 2 – Dr. Laurie K Mischley tells us that loneliness is the biggest predictor of outcome in PD. The more lonely you are, the faster the decline. Lockdown can lead to loneliness. We are social beings. We need be with other people to live well. We can’t just stay home and obsess over video games all the time.
3. Spend time with your friends who do not have Parkinson’s. When I am with them, Parkinson’s is never the main topic of conversation.
4. What things did you enjoy prior to PD? Just because you have Parkinson’s doesn’t mean you can’t do the things you used to like. Your skill level may have dropped off because of PD, but that is no reason to quit. After a while, if you stick with it, you might even see some improvement in your symptoms. You will also have less time to spend on compulsive behaviors.
5. Have someone monitor your screen time so that you do not spend hours trying to solve that game you have fixated on. There are so many other productive things you could be doing with that time.
6. Try something new. Learning a new skill or a foreign language can help rewire your brain. Just don’t overdo it. There is always the risk here of ICD’s.
7. Finally, talk to your doctor about your medications. Tell her if you are showing signs of ICD. Sometimes a small change in your medications can make a huge difference.

Spring is here. Days are getting longer and warmer. Get out and enjoy it without letting Parkinson’s take over. You can do it!

• Learn more about dopamine agonists and ICD’s in this blog post by Frank Church: “Dopamine Agonists and Impulse Control Disorders in Parkinson’s.”