Randal "Tex" Cobb Blues

            Many people with Parkinson's are encouraged to participate in Rock Steady Boxing (and yoga, dancing, active hobbies). The point of this is to increase strength, decrease rigidity, gain balance, achieve confidence, and meet friends. People come from a wide variety of places and backgrounds to participate in hitting the bags. At no point in this endeavor are people encouraged to go medieval on one another, let alone reenact Mike Tyson’s dinner reservation with Evander Holyfield. While taking fist to leather relieves stress and frustration (an added bonus), it’s not meant to mimic hurting another person. It’s meant to give us a path away from sadness by putting us in control of our own set of interactions with Parkinson’s.

            First and foremost, at all too many points in the lives of those people who have it, Parkinson’s is a cheap-shot “heel” from pro wrestling, who doesn’t play its game fair. For others, PD plays the role of the superior heavyweight champion. Knowing what we are up against allows us to prepare our fight against its.

            Take Randall “Tex” Cobb, who went fifteen rounds with Larry Holmes. He lost by decision, but he never went down. To me, he is the ultimate “Won’t Back Down” metaphor.

            We see this in injured runners like Derek Redmond or softball players like Sara Tucholsky. 

I saw this when my wife pushed herself 2 miles through the desert after an ACLinjury. All of these people were aided by others, but isn’t that life? We need other people. What’s more, if they can, I can (or at least come close).

1.      To understand the Tex Cobb Blues, we must learn that there are no trigger warnings in life. Parkinson’s symptoms will make you and yours cry. We can choose how to approach them, but things like incontinence, cognitive issues, and loss of independence are coming for many of us. We need to be ready for them. There’s no rug to hide under when the freezing hits town. If we follow Tex's advice, we train to hit back and take the pain.

2.      In between the rounds of our life, we can go for hugs, high fives, and encouragement. We need love, respect, and appreciation. Our caregivers are huddled as a team to keep us moving. Their empathy is a great thing. People need to be in our corner rooting for us. We need to be in our corner. If we can balance the need for strength and the ability to let out our emotion, we'll be OK.

3.      We need to fight this fight round by round. This means, our game is to focus on today instead of worrying about tomorrow. I can’t say if the aliens from Independence Day are coming tomorrow or not, but I can say today is a nice day, so I should smile and enjoy it. Remember, the best revenge is living well.

4.      Remember that line in Caddyshack where the judge tells the grandson, “You’ll get nothing and like it?” Well, that’s how PD talks to us, except it's not funny when PD does it (goll dang, Ted Knight and Rodney Dangerfield were great in that movie). We can’t ask it to be gentler since it’s not listening. It’s coming to take our hobbies away. It doesn’t bargain. It just does. Thus, if you can find interest in playing cards instead of swimming, do so. It’s all about how we see the hand we’re dealt. 

5.      When I went to Basic Training, the first thing they asked us was, “Who has promises in writing from a recruiter?” If you didn’t, you were out of luck. Just like in Disney’s Up, we have our Adventure Book. What we do with it when life gives us lemons is up to us. Thus, I want to go with my wife to Bora Bora someday, but there is no guarantee. I wasn’t promised a rose garden in writing, so maybe I need to go out of my way to enjoy the petunias, daffodils, mums, and irises that I find along the way.

6.      Not every round is going to be pretty. In fact, there comes a point where we're going to hate and resent it all. There will come a time when we’re not going to listen to any more medical advice because we're sick of being diagnosed with some other co-morbid condition or be told that we need yet another medicine that will affect our mental / cognitive / behavioral life in the name of controlling some other symptom or condition. Here, there comes a point when we need to vent safely (scream at an inanimate object, hit a punching bag, journal, etc.). That's OK. It needs to come out. Sometimes, we’ll be like the crew in Apollo 13, stripping off sensors to exert authority as we refuse a test or procedure. For Jim Lovell's moon landing crew, that makes sense. They're stranded in space, unsure if they'll land. Who gives a hoot about vital signs when they have to get through lottery odds to have a shot at re-entry. While the team of doctors at Houston freaked out, Ed Harris' team leader let them vent. It was a very human understanding. Get it out, and get on with life. Like them, we get sick of being prodded and poked and analyzed objectively and subjectively. We see the final conclusion, so we choose to do things by expressing our own dignity. Many times, it's just momentary frustration; however, sometimes, it’s just refusing to be another medical condition in an endless stream of conditions. Remember, it’s not quitting if we’re committed to what we believe in, even if it’s only parts of the whole. That said, before quitting, ask your doctors for advice. We can't just pull ourselves off of some meds.

7.      If you’ve got energy left, then it’s possible to win the match. Muhammad Ali didn’t win his fight with Sonny Liston until the end. Our cure isn’t coming this month, but we need to hold on for when it does. Until then, we’ve got endless potential. This, to me, is the story of Camus' Sisyphus. If there's a possibility, there's hope. Set yourself up for a chance to win. Just like in NASCAR, a racer can lead the most laps, but the only lap that counts is the final one. For this, Trevor Bayne will always be a past Daytona champion.

8.      Remember, even if you’re giving Parkinson’s a what for and you’re wondering why badthings happen to good people, then just remember Samuel Beckett was right. “Ever tried. Ever failed. No matter. Try again. Fail Again. Fail better.” There is always hope. Don't lose faith in your philosophy / theology. Find meaning in the suffering. For me, that's sharing my story. Like Cobb, I'm taking the hits, but I'm still standing. I don't like the other choice.

9.      What’s more, there’s still a lot of love to give and receive. If you can still express and feel love, then you’re still alive, no matter who is winning the fight.

10.  In the end, it’s not about being tough 24/7. Nobody can play that game. However, by confronting the reality of what we’re up against, we’ll know how to fight it better. Remember, if you need help, there are plenty of people who are willing to help you (in real life, online, and around the corner. Keep believing! I'd like to think that's what Cobb felt when he transitioned from boxer to actor in Nicholas Cage's Raising Arizona.

Keep your guard up and swing back whenever you can!

Sleep: The Good, The Scary, and The Future as Well as Some Thankful Expressions

Recently, my friend John who works at the Salt Lounge in Wyomissing, Pennsylvania, invited me to experience salt therapy at his place of work.

I must say, it put me to sleep. Literally. I was awake for 15 minutes, and I fell asleep.

That's not a bad or uncommon thing. In fact, the staff warns you that it could happen because the therapy WILL relax you and make you breathe easier. Put simply, it was the bomb diggity. Right now, the goal is to take my wife back for our anniversary in August and do massages and salt therapy.

To set the stage, when you walk into the room, you are mandated to take off your socks and shoes as you walk across a floor of pink Himalayan sea salt. Apparently, people don't want to walk barefoot through your gunk, so please oblige.

All around you is additional pink sea salt, which is pumping into the room. You are given a Walkman with various trance style music to listen to, and the lights are dimmed to reveal white specks like stars, which appear as glowing lights. These flicker on and off as the spacey music fills your brain.

So there I was, sitting on an Adirondack chair, letting my thoughts vanish, and drifting into no thoughts. WHAM! I was woken up a half hour later to hear that it was over.

What? It's over!

If I were to do it again, I would have The Orb's "Little Fluffy Clouds" on. I think that would express everything I wanted to feel in the moment.

Anyway, I've had good luck with salt therapy in the past, so convincing me to go was no big deal. My wife's sister had one of those salt lamps, and I slept really well with it when we were in Georgia. This was prior to my sleep aepnea diagnosis (though I knew I had it). Right now, I don't sleep well at all, so for someone with sleeping / breathing issues, the salt is a good thing.  Now, we've got 3 set up in the house. Two were gifts from her, and one we had, but it was in the attic.

As for my post-salt therapy sleep experience, keep in mind, I went home that evening and laid down on my couch, drifting off to sleep. I woke up 12 hours later to a phone call that I was late for hiking. I didn't wake up to go to the bathroom prior to that either, which is unheard of! Also keep in mind, 12 hours of sleep is 2 nights in my world of insane sleep (more about that later).

Obviously, you good people are spread out, but if you're near Reading, Pennsylvania, you should swing on by. There's lots of other things to see and do in Wyomissing. After all, it's where Taylor Swift lived before moving to Nashville, and yes, they claim her pretty hard around here! Other than that, you're about 30 minutes from Amish Country, too.

I recommend Shady Maple Smorgasbord! It's pricey, but it's better buffet food with more quality choices. You'll feel the bloat, but it's worth it! Taylor Swift might not be able to eat in there now without being mobbed, but you might see Raymond the Amish Comic!

+++

But anyway, when it comes to sleep, I have been having issues lately. In the last 3 weeks, I have had many aggressive dreams, which is weird because I'm actually feeling pretty mellow, and in the worst of the dreams, I was falling asleep to Parks and Rec.

1) Someone is saying horrible things about Parkinson's people, so I stand up for all of us. Mind you, I am at the house my family lived at from age 16 to 29. I feel that I have nothing to lose, so I talk said person down only to confront another person who feels like he needs to keep the aggression flowing.

2) A dream where 2 former bosses melt into one another, and I have to confront them over lies they are saying. One of them is from nearly a decade and a half ago. Somehow, this dream drifts into going back to Basic Training. A lot of my dreams do. I tend to find myself in a more comfortable and capable way while there than I did in real life (yes, I get the symbolism of that). I have been back to Basic Training with my wife Heather, myself, and my former unit, some 30 years later. They're not bad dreams, but I always dread doing things like 6 inch square folding and locker inspection preparedness. I'm more exact about things like writing, but things that can just be... they tend to be.

3) I have had 2 punching dreams that I remember. In the second dream, I'm not sure why I punched, but I know I swung at the headboard. In the first dream, my wife and I were in a store, where we encountered the owner having to fight back against a rambunctious crowd of post-teens. As he defended himself, one of the thug kids asked if we wanted to help get him. I refused, and soon we were fighting off the thugs. I know I swung at least twice. Despite having no control over my out of sleep actions (a part of REM SBD, which keeps the body from being shut off), I am hyper-aware of them. In the past, this has allowed me to fly or choose direction. I can also talk to myself in my dreams. Let's just say, it's a wild ride in there. As this dream continued, I found that we were having to fashion spears to go on the attack. When it was over, it turned out that it was some kind of a game (I assume somewhere between a club and the Hunger Games), and because of that, they were gearing up for a second round.

4) I had another dream where 2 people I know were present. The wife was being condescending and hateful toward the husband, and I remember shoving her for this. As that occurred, the husband announced that the wife was cheating on him, so it was a case of me defending his honor in somewhat the way I did the people with Parkinson's in #1. After that, I remember him resolving their situation to find his independence.

5) In another dream, I met John McCain during a session of Basic Training. I remember that he was feeling that some of my observations about him were wrong, which bothered me because he's my current favorite living leader.

6) Additionally, while falling asleep, I might wake up and feel my body snapping here and there.

+++

Recently, I had another sleep study to figure out why I'm ripping my sleep apnea mask off every night. I wear it, and it doesn't feel uncomfortable. I manage to fall asleep, but in times that range from less than an hour to less than 4 hours, off it comes. I have NO KNOWLEDGE that this has happened (except in 1 case). If I sleep on my back, I fare better, but that's not perfect since I'm a side sleeper. Hence, my pulmonary doctor sent me back for more tests because she's still trying to be sure about asthma and aspiration pneumonia. I've written about THIS in the past.

I've also written about sleep apnea before. Here is part 1 and part 2.

Personally, I'm more sold on REM Sleep Behavior Disorder and Parkinson's breathing issues.

This is my first pneumonia account. This is the second.

Anyway, all 3 times, I went here (though to 2 different centers, but the same attendant Michelle). I sent this to her boss.

I am writing this letter to commend your employee, Michelle.

Over the past few months, I have been to 2 different Lancaster County sleep centers over 3 visits. Each time, I had the pleasure of being treated by Michelle. Her manner has always been upbeat and she shines with dedication to her profession.

While much of her job that that patients see deals with getting them ready for the study by “wiring them up,” she does her best to cut down on the awkwardness and potential discomfort of the on and off sticky substances. Here, she even made the “goopy” part of the experience as pleasant as can be (the same was true for the reverse part of the procedure).

Additionally, she worked hard to explain everything that was about to be done and that was done. She did while all the while answering all of my questions. While this is “part of the job,” I have an excessive amount of questions due to the fact that I have Parkinson’s disease, which is a condition that I write about for myself and Health Union.

Here, I am able to take my former life as a teacher and combine it with my current life as an educator / advocate and combine them in a written form so that other people and I will be able to understand the process. Knowing that I have a solid professional voice guiding me to answers while helping to alleviate concerns makes me confident of who she is as a professional. Also, with her help, I am able to assist others in coming to accept help with sleep apnea. To me, this is what life is all about.

Please know how appreciated your staff member is (she’s not just helping me – her care is making a difference world-wide. Here, I can say this simply: I would recommend your practice to anyone for the value she brings to it.

I really like writing letters like this, but I also like being able to be a part of the research in a hermeneutic phenomenology kind of way. While that's a big way of saying a researcher aims to find cold hard "objective" data in how people "subjectively" describe their own participation in an action. For instance, I tell you in paragraph form how it feels to get a treatment. 

Here, my writer's side allows me to express what I'm going through in enough words to really make something of it.

On that note, I hate questions like "How much pain are you in?"

What's  a 0? A perfect Sandals vacation?

What's a 10? An 8-year stint at the Hanoi Hilton?

So where is my aspiration pneumonia in all of that? Is a 4 a fair estimate? If I said 8, is this just a weak pain tolerance?

How about I just describe it to you?

Working with Michele is easy because she's into the dream aspect of the job, and was able to talk about future research with that as well as what's going on. 

For instance, I could ask her things like, "Did you catch that dream in the second half?" She would tell me she did, and she could describe some of my actions like how I moved my feet (part of my REM SBD). Unfortunately, she can't TIVO the dream for me... yet.

While there, I didn't rip the mask off, and I slept easily (as I did the other times). I had really wanted to work with the doctors to watch me do this while they explain it to me, but yeah... maybe I'll just have to set it up in my bedroom. Then again, do I really want to? I might reveal ghosts (!?!?!?!?!).

Somewhere in all of this, I find myself working to help myself, but I also find myself frustrated with the endless search for problems to label. I feel like the astronauts in Tom Hanks' Apollo 13 when they just get frustrated with being trapped in space and doubtful of their return, so they rebel against being monitored by Houston by pulling off their sensors.

Nobody will know my kidney functions now!

Of course, just like with Jim Lovell's crew, there comes a time when we need to be left to do this, and there's a time to just shut up and listen because this effort for Sisyphus might be heroic.

I'm not sure of where I am with regard to the treatment. I believe it could help, but unless I stay at the sleep center (my wife would have a problem with that) or we fastened the mask to my head with metal clasps, I'm just not sure.

Additionally, I'm done adding medicines for a while. I sleep alone, so I'm not a danger to other people, and besides, not all meds are good for me. My doc referred to my body as "too sensitive." Here, I have little interest in yet another brain medicine when I have 3 already.

In the meantime, I'll strap on my mask tonight and hope for the best.

(Also, see THIS POST for more about my sleep issues regarding some of the reasons I sleep alone as well as other issues that Parkies face in the bedroom).