Davis Phinney Foundation, Must Read, Parkinson's Disease, Parkinson's exercise, Parkinson's Patient Care, Support Groups, Uncategorized

Four Steps To Revive PD Communities

Ed Note: The following blog is the work of Melanie Dizon of the Davis Phinney (Parkinson’s) Foundation. It is the first concrete plan I have seen that addresses restoration of social connections in Pandemic-stressed, Parkinson’s communities. Hats off to  Mel and her colleagues for a wonderful, just-in-time plan of action.

 

In the beginning, it was kind of fun, right? Or at least interesting.

You learned how to connect with your family and friends online.

Your Rock Steady Boxing coach, Dance for PD®  teacher, and your Pedaling For Parkinson’s™ instructor came through the internet and right to your living room or home gym for a safe workout.

You may have even tried out a new skill, picked up a long-ago loved hobby, or took up a new sport while you followed “stay-at-home” orders.

You even listened to those who said, “You can live well with Parkinson’s at a distance”, especially your doctors who you may have “seen” and spoken to even more lately because of the magic of telemedicine. (If we can keep and build on one thing from this crisis, can we please make it access to telemedicine for all!)

Fortunately, in the early days of the COVID-19 pandemic, you did continue to live well with Parkinson’s. You made a commitment to it. You promised yourself you would do it. And you vowed that nothing was going to get in your way.

But, nine or 10 weeks ago, you couldn’t know how much you’d miss hugs from your boxing mates, a fist bump from your cycling buddy after you survived a tough climb, or the knowing nod and the tell-tale creasing of the eyes when someone who truly gets you returns a smile. You may have suspected, but you never had to test out how important those physical connections are to living well with Parkinson’s.

Now you know.

And Zoom support group calls, YouTube videos, and online group exercise classes are starting to wear on you. And despite their widespread availability, so much so that you could fill your day with them if you wanted to, they are exactly no substitute for the in-real-life connections you crave.

Over the past couple of weeks, we’ve had more time than ever to check in with our Parkinson’s community and listen to them talk about their experiences and challenges. Without a doubt, the challenges that come from not being able to be in the same room together are at the top of the list.

So, while we know that we aren’t out of the woods yet, and that some of these online solutions will likely be with us for a while, we wanted to share four simple things you can do to feed your need and longing for in-person connections today.

(Note: Please check with your medical and care teams before you try any of these out.)

#1 – Find a walking/running buddy to add to your pod

While enclosed spaces have shown to be breeding grounds for the virus, recreating at a safe distance outdoors is fine for many people. Consider reaching out to a Parkinson’s buddy who enjoys walking or running, and who you know has been abiding by their state and CDC regulations, and schedule a daily or weekly run/walk and talk with them. Wear your masks, keep six feet apart, and have fun.

 

#2 – Have a coffee date in a parking lot

Missing a friend from your support group you haven’t seen in over two months? Invite them to coffee at a nearby school parking lot. Bring your own cup of joe and a mask, park at a safe distance, and either grab a seat on your hoods or bring some chairs so you can chat and catch up.

#3 – Pack a picnic

Invite members of your favorite exercise class to a picnic at a large park. Mark off squares that are six feet apart in all directions and have people set up blankets or mats on each square. Eat, stretch, play a question game, etc.

 

#4 – Play music, sing, meditate, draw, make

Do you have some Parkinson’s friends who play instruments, love to sing, are avid meditators, or just love to make things? Gather in a wide-open outdoor space with your favorite “tools” and see what happens. Sometimes just being in the presence of others you care about, even if you’re not doing the same thing, even if you’re not talking, is all you need to feel connected. Sometimes, it’s simply the shared desire to connect and seeing other people show up for you that’s all you need to start feeling like yourself again.

Not everyone will feel safe getting out in these ways. And as we said before, your care teams should sign off on this as they know your specific situation better than anyone. But, if you do get the all-clear, these are four easy to do but very meaningful ways of connecting in real life, for now.

Parkinson's Disease, Uncategorized

The (Covid-19) World According to Garp

 

My memory bank brings me the odd word pair: “Under Toad.” There’s no reason that I can discern for Under Toad’s recent appearances.

Under Toad is the literary invention of John Irving in his 1978 tragi-comic novel “The World According To Garp.” I read the book 40 years ago. Loved it.

The title character’s son Walt mishears warnings about the undertow at the beach as a warning about an “Under Toad.” Father T.S. Garp employs Under Toad henceforth to refer to the omnipresent threat of disaster that he sees lurking beneath the surface of everyday life.

My friend Rich Harwood has been traveling the country promoting his latest book “Stepping Forward.” It is a compelling call to action for citizens to step up and rebuild their communities.

He describes people “slogging through” their days due to Covid-19 uncertainties and disruptions. I believe Rich’s “slogging through” is the Under Toad at work in our lives. Imagine the sensation of walking in wet cement.

I am privileged.

I write on the screened-in porch of our 2,700 sq. ft. cottage shaded by 100-foot pines and 50- foot oaks. I listen to the songs of the American Golden Finch, Blue Jay, Northern Cardinal, Chipping Sparrow, Pine Warbler and Tufted Titmouse. I watch the birds’ choreographed, flaps- down landings on our five bird feeders.

My wife and I live in Carlyle Place, a life plan community in Macon, GA. The 58-acre retirement complex has a common area of apartments and care units. Ours is one of 59 cottages that ring “The Big House.”

For all the protections Carlyle Place provides, we can’t escape the “omnipresent threat of disaster” from Covid-19.

It hasn’t breached the secured walls of our gated community. But we have a kind of hermetic seal around our lives.

Visitors are sharply limited. Distancing restrictions limit our ability to meet in groups larger than four. Masks are to be worn when we walk the bucolic grounds.

Parkinson’s sufferers like me are managing a second Under Toad. That’s Old Doc Parkinson’s penchant for throwing bean balls at us. Think lightning strikes of hypotensive lightheadedness or bladder overflow.

In the movie version of “The World According To Garp,” Robin Williams starred as Garp.

Williams died in 2017 with Parkinson’s.