Fighting Parkinson’s in Isolation

Posted On March 17, 2020

As the world hunkers down for a long battle with the Coronavirus, isolation will become an issue for everybody, and it will be particularly impactful on people with Parkinson’s disease (PD). In this post, I will offer suggestions for maintaining a proactive, hopeful approach to fighting PD in this challenging new environment–and ask you to share your ideas.

PD is a progressive, debilitating, neurological disease (a tag you’d think would generate more concessions at home than it actually does–jk!). While traditional medicine has so far failed to find a cure, researchers conclude that lifestyle changes like exercise, diet, good sleep habits and socialization can slow the progression of the disease. There’s no published research I can cite, but after many conversations with clinicians and researchers I believe those of us with PD adopting these lifestyle changes can (on average–no guarantees with this unpredictable disease) add more than five quality years than if we had not made the effort. To me, this is compelling motivation to find new ways to adapt the good habits I have learned to fit in our new world of social isolation, at least for the next few months.

Like many of my fellow PD gladiators, my proactive strategy has revolved around the gym, providing both adapted exercise and most of my social interaction. When I wasn’t traveling, I typically attended three or four 75-minute LDBF Boxing for Parkinson’s classes weekly and did weight work at the YMCA twice weekly. I also do a 30-60 minute daily mash-up of flexibility, balance and agility drills at home, and the pandemic-induced isolation has me scrambling to add an hour of cardio and weight training to my daily routine in a 1500 square foot condo (I almost got TKO’d shadow boxing when I underestimated the sneakiness of a lamp entering my exercise space).

It’s challenging. I can exercise longer in the group exercise class because it’s a social experience. We are PD gladiators fighting a common enemy. We challenge each other to work harder. We joke around, talk sports, compare notes on our symptoms and latest reading. Sometimes we even sing and drum. At home, I’m just an unshaven 59-year old man aging at an accelerated rate and bouncing around in his sweat pants. It’s not a pretty sight!

I am working on a few ideas to help me and my PD friends maintain our exercise routines and social connections without risking a potentially deadly foray into this creepy new world. Please share any other suggestions as comments below or on Facebook.

1. Add some randomness to make your home exercise less routine.

The managers of the LDBF Boxing for PD program I attend have produced short videos of sample warm-up and cool-down routines and have suggested shadow boxing for the remainder of the workout (almost an hour). Ugh! It’s a struggle for me to punch air and do footwork drills for even 30 minutes (part of the therapy for me is hitting…stuff). Here’s a fun tool that PD boxers on hiatus from the gym (or any home exerciser) can use to add an interactive cognitive component to shadow boxing:

Get the free iOS app “The Random Number Generator” created by Nicholas Dean from the App Store. (I’m sure there’s a comparable app for Android phones or a desktop computer). Set the number generated to 1 through 8. Open “Settings” and set as follows (adjusting for your preferred pace):

• Auto Speak Number: Green
• Speech Speed: about 67% to the right
• Auto Generate: Green
• Auto Speed: 100% to the left
• Show Share Button: either
• Show History: either
• Don’t Duplicate Numbers: White

This app can be used to simulate two drills our LDBF Boxing for PD coaches do in class:

(a) Continuous Punch drill: the app verbally calls out randomly generated punches between 1 and 8 until you stop it. Adjust the Speech Speed to increase or decrease the challenge. (Sorry folks–the app only comes with a friendly female voice and cannot replicate military cadences or recite lectures on the Peloponnesian War during breaks– nice features to request for the next version, though!).

(b) Punch Combination drill: the app calls out a random sequence of as many punches (1 through 8) as you want to practice as a combination; you then stop the app from yacking (a “Shut Up” button would be another welcome addition to the next version–but not at the expense of the Peloponnesian War lectures) and practice the combination for a minute. Repeat with a new sequence. Try using “Shake to Generate” to start the sequence, hold the phone while punching, and tap the settings icon to stop the generator (your “Shut Up” button until the next update). Shake the phone when ready for a new combination.

2. Welcome a few digital classmates into your home

When Nate Coomer began offering live-streamed versions of fitness workouts from the Parkinson’s Fitness Project studio in Seattle, he had hoped to enable people who didn’t have access to PD exercise classes to work out from the safety and comfort of their own homes while also providing a supportive community. Now, with PD fitness classes being cancelled around the world, The Daily Dose is positioned to give newly-isolated exercisers some motivation to keep going from home. Access to all new live-streamed classes and their vast library of past programs (over 200 at a quick glance) is available for $29/month or $290/year; they offer a 30-day free trial and 50% off the regular price for the next three months (use Promo Code: MOVE). That’s $45 for four months of Nate and friends motivating you to keep fighting while housebound! You can also view several free workouts to get a feel for their content.

Nate is an animated class leader (with some attractive friends), and the videos are professionally produced in an inviting workspace. The workouts are designed for those with PD and, according to their website, include research-backed methods proven to slow the progression of the disease. They feature a wide range of content, from High Intensity Training and Boxing to Yoga and Tai-Chi to Chair exercises for those with diminished mobility. The workouts vary in length from about 10-15 minutes to almost an hour.

While The Daily Dose won’t replace the camaraderie of our beloved PD fitness gathering places, it will help motivate and guide people with PD at different levels of ability and disability to continue to take our daily dose of exercise. And as an added bonus, care partners can work out along with you at no additional cost! (But watch out for sneaky furnishings in a crowded workspace…)

3. Virtual reality is as real as it’s going to get for a while–embrace it!

My wife, Ellie, has led our local PD support group for the past several years and, naturally, she was disappointed to have to cancel our meeting this week–and, realistically, for the next few months. Attendance varies at the monthly meetings, but they have provided a fixed time when our members can count on somebody to talk to or share experiences with that I think most of us find comforting. With the uncertainty created by the pandemic, we thought this touch-point for our community would become even more important, and we have decided to (try to) create a virtual support group meeting using software provided by freeconferencecall.com (it’s really free!). I spent several hours over the last few days trying to learn the features to provide concise instructions for our members and avoid any unexpected pitfalls (but I can’t do anything for you if you forget you’re not wearing pants, people).

We’ll see how the experiment goes this week, but in dabbling with this “new” problem of social isolation, several thoughts occurred to me that warrant community discussion or personal action:

• Social isolation is status quo for many people suffering from advanced PD or other chronic illnesses. Are any communities already offering virtual support to home-bound people with PD (or other afflicted groups)? Maybe a few members we haven’t seen in a while will pop up in our online meeting this week (with pants) and confirm that a vital need was not being met.
• Our PD exercise classes have become de facto support groups that meet on a daily/weekly basis and help keep members motivated and educated. Are virtual meetings something class leaders should consider organizing to maintain this camaraderie?
• Can these virtual meetings be set up in a way that enables groups to continue to exercise together by connecting an instructor and all participating members while in their exercise space? I suspect this could be done by strategically placing tablets, smartphones and laptops–it probably would not be a professional looking production but would still be extra motivation to do a full workout (and shave)?
• I (and I assume I’m not alone here) am not a big chatter but do enjoy the company of others and prefer to socialize in the context of another activity–exercise classes, Topgolf, bowling, game night, poker, etc. In recent years, many others have used Meetup.com to find like-minded people (or organize acquaintances) to socialize with in “real time.” Can virtual outings among friends/acquaintances from our PD exercise and support groups be structured around different activities that replace these real time activities as a reason to socially gather and enjoy each other’s company? As one small scale example, Ellie and I just spent a very enjoyable Sunday afternoon on the phone with my mother in New York doing the NYT crossword puzzle together. We all wise-cracked and brainstormed and chatted together for three hours and felt like we had a real visit. My next project will be to see if I can hook up my Wii video game set to hers so that I can kick her butt (or maybe yours) in table tennis from the comfort of our own homes! (I’m betting our kids can probably help us on this one…)

Let’s shake the chi together and see what ideas pop out. Please submit your thoughts below to add to the discussion.