[rich]

I’ve recently started listening to this podcast, and it has a great balance of information and humor from a husband-and-wife team going through their PD journey: https://www.parkinson.ca/resources/when-life-gives-you-parkinsons-presented-by-parkinson-canada/

parkinson.ca

When Life Gives You Parkinson’s Podcast: Presented by Parkinson Canada

Parkinson Canada is a proud presenting partner of When Life Gives you Parkinson's. Larry Gifford hosts the podcast “When Life Gives You Parkinson’s” which details his journey with the disease as a guy in his mid-40’s with…

[rich]

Everyone here seems so accomplished that I hesitate to jump in the fray!

I could never afford a drum set, although I loved to play other people’s when given the chance. But I could afford drum sticks! So I actually air-drum to my favorite music, which wouldn’t probably be a therapy my neuro would automatically suggest. But I’m stretching, I’m manipulating my wrists, I’m swiveling, I’m tapping my feet, I’m anticipating the next beat, I’m singing lyrics, I’m sweating—and I’m *smiling*. Here’s one of my go-to songs: https://www.youtube.com/watch?v=LdpMpfp-J_I.

Do I look like a fool doing it? Absolutely. And I couldn’t care less! 🙂

As Alan said, “Thank the heavens for music and musical instruments!!”

[rich]

You know how some people air-guitar when they hear music? For some reason, I’ve always been more of an air-drummer. I’m still in the early stages of PD, but the stiffness in my right wrist/fingers is there. Although there are hand exercises to help with that, they’re not exactly fun. So I picked up a pair of drumsticks, even though I don’t have a drumkit. But when I put on some classic rock, I work my entire upper body. All I know is that I feel energized as I do it!

[rich]

I had the same kinds of problems, where I couldn’t sleep consistently. I’d sleep for the first few hours and then be up for a good 30 minutes and then just kind of “bob along the surface of sleep” until morning. So I’d be pretty foggy following those nights. Melatonin and OTC stuff didn’t work, so I asked my neuro about a non-addictive aid, and she prescribed Trazodone—it has made a ton of difference! A separate neuro also got me on a CPAP machine, which I struggled with for the first week but now do fine with. That combo means I wake up only 2 times a night at this point.

Good luck to your dad!

[rich]

Well, on the anniversary of my 19-month diagnosis, I was talking to my wife about how nice it would be to not wake up each day and think HEY, I HAVE PARKINSONS! But that said, I’ve felt pretty good and kept my humor and outlook up overall over the past 19 months.

But then I had some mini-strokes 2+ weeks ago, thanks to a tortuous carotid artery that I didn’t know was a problem. And as with the PD, it’s being treated with meds for now and life goes on. But I’ll admit that it threw me for a loop! I still see beauty around me every day and I still have a life I’m trying to pack full, even if it’s at a little different pace.

But I’m now just calling my “package deal” BRAIN BATTLE 2021! The strokes obviously take center stage these days, and now I wonder how nice it would be to wake up each day and *only* think HEY, I HAVE PARKINSONS!

[rich]

Good for him! My right hand is my stiff one, and the exercise I like is putting my hands up at head level with my fingers extended (like a “freeze” pose), making tight fists, and then throwing them open at my sides with force.

I also stretch and touch the ceiling 10 times and then hold it for 10 seconds.

Does the stiffness go away? Naw. But it least gets me going enough to take on the day and get to work!

[rich]

I have early PD and no caregiver (yet!), but it occurred to me: would a chart similar to pain charts in ERs help? They show happy faces (no pain) down to medium faces (hurts somewhat) to crying faces (extreme pain)—but could be adjusted for attitude, I’m sure. Have him point to where he’s at in a given day, maybe?

Mary Beth, the first thing I thought in reading this was that, hell, marriages and friendships are like that too! When do I involve myself? When do I step back? When do I encourage or stay quiet? It’s a common concern, exacerbated I’m sure by the PD.

 

[rich]

Thanks, Jo S.—those were good! I’m not sure of those without PD would appreciate these jokes, but they just show that while PD is serious business, there’s room for laughter to power us through.

[rich]

OMG, yes! Without humor (and music) to get through *anything* in life, much less PD, I’d have a horrible time. One of the first things I did after I got my diagnosis was to seek that clip of Michael J. Fox on Curb Your Enthusiasm, where he “accidentally” shakes up a bottle of soda before handing it to Larry David, and Larry then is pretty sure Michael is just blaming it on the Parkinsons. I had to do that, for my mental well-being, because life doesn’t stop with a diagnosis. You adapt and keep moving. You have to, whether it’s PD or anything.

You know, the first time you mention PD to anyone, they give you THAT LOOK and seem ready to relate some story of knowing a relative or someone who has it. So to put someone at ease, I’ll use humor. That fishing joke is great! My go-to one is:

You know the best part of Parkinson’s? Instant jazz hands! [with some hand shakes]

Poor taste? Call it dark humor, but I can’t “WOE IS ME” my way through life. Chin up, smile, and find sunshine and purpose—and if you can’t orient yourself to do that today, seek to do so the next day.

[rich]

Great question, Katy—because we all struggle! I’ll pass on two things that help me.

1. Sunshine and warmth. Problem is, it seems constantly cloudy and cold lately (literally and maybe figuratively?). So on the days like that, I picture what’s beyond and above the clouds: blazing sun, blue skies, and warmth. I’ve found myself on cloudy day walks staring up and thinking to the  sun I KNOW YOU’RE UP THERE AND I’LL SEE YOU AS SOON AS I CAN!

Stupid? Yeah, kind of. But it’s about trying to flip the script. I want sun. And I get clouds. But I focus on the sun anyway.

2. Music! Always, every day, music. I’ve found that even just 15 minutes of music I love can re-orient me faster than anything. That may not be your thing… but what do you enjoy on a daily basis?

Good luck!

[rich]

I for one take great comfort in seeing PD celebrities (“PD-brities”?) out there, whether it’s MJF doing Zoom calls with the cast of Back to the Future or Neil Diamond singing and playing his guitar earlier this year or Alan Alda smiling while talking about marching around his house. I’d much rather focus on this positivity and seeing folks living their lives as best as possible than… I don’t know, reading Facebook comments from folks talking about horrific PD is and how sad it is and blah blah blah. (I think those are mostly from people who don’t have it.)

Each day when I wake up—and I’m an early-onset guy diagnosed 14+ months ago—I literally say, “I’m alive and I have things to do and people to help.” I need to have positivity and daily goals to help me “stay afloat,” and some celebrities are indeed sources of inspiration to me to push on. If MJF can write books, and Neil can still belt out “Sweet Caroline”… then what can *I* do?

[rich]

Well said, Josephine. I would *love* to talk more about my PD, but few people want to hear the woe-is-me stuff. I focus on the positive to, as you said, keep others from feeling bad. But I also do it because I want to be viewed as “me” and my entire personality, and not just “the guy with PD.”

[rich]

That’s a great idea, Janet! I’ve seen people play them but never thought about doing it myself—until now. I’ll look into that! 🙂

 

[rich]

Thanks for writing this, Charles: ” I’m hoping something else gets me first like a massive heart attack or a fast, fatal stroke. I simply will not accept living a liife with no meaning or purpose, without quality, as only I can define that for myself. I’ll control my own destiny before I lose control over being able to make such a determination.”

This isn’t a comfortable topic for some, but self-determination is a key factor in our struggles. I’ll remain as optimistic and life-affirming as long as I’m standing, and I want to serve as being the beset person I can to my wife and kids and friends while I have the ability. But once those abilities go? I have no real interest in being an anchor to anyone. It’s hard to discuss this, and I appreciate your candor here.