Aspiration Pneumonia / Reasons Not to Think - Your Job is to Know!

            This is the follow up to my previous post on missing Christmas Eve and Christmas due to  extreme sickness.

            You know that whole thing when you go to the neurologist and he / she asks you about difficulty swallowing (dysphagia)? Well, it’s not just choking risk, my Parkinson’s friends. It’s aspiration pneumonia risk, which according to the Michael J. Fox Foundation is the number one leading cause of death for us Parkies.

            Personally, as I’m not in a rush to die, I’ve found it in my best interest to look this up to learn more, and I wanted to share it with you so that you do, too.

            So what is this exactly? You know when your mom worried something went down the “wrong pipe” when you coughed while drinking or eating too quickly as a kid? That. Stuff can go down the wrong pipe, and when it does bad stuff can and does happen.

            Why do I write this now? Well, it seems the flu / bronchitis that I thought I had (the wheezing I had mirrored past bronchitis and the fever / chills mimicked bad flu moments past), well…. It was actually pneumonia, though they just called it sepsis pneumonia, not aspiration pneumonia (hence a good reason not to self-diagnose), so remember, just because your mind formed a map, it doesn't mean that it's a good one.

            Looking at sepsis pneumonia, that doesn’t seem nice either with the “kill” and “disable” wording for untreated. What this means is this: Don’t be big, brave, or cheap. Don’t think time will work stuff out. Get the right medication, and get it early or "stuff" might happen (and I like you by virtue of your choosing to read my writing, so I'd like you all around for a while). By the time I went in at 2:30AM on Wednesday, I was having hot and cold shifts every 15 minutes and dying in my sweat with urinary pain. Simply put, it sucked. I felt incredibly weak and nauseous at the hospital, but through the great support of Wellspan Community Hospital in Ephrata’s entire staff from ER to discharge (to include dietary and housekeeping – not just docs, nurses, and techs), I got antibiotics, respiration, blood thinners, and nursing / medical treatment from all angles. 

             I didn’t get much sleep during my time there (nor did my wife who I woke up to take me in), but who at the hospital does? People are there to be worked on, not treated to a spa. I can sleep tonight.

             Additionally, daytime TV tends to be lousy, so yeah… unless they get Destination America, MLBTV, or Netflix, I don't intend to go back any time soon. Long days of nothing, even with loved ones, aren't fun on a thin bed wired for sound and down for whatever, but I did have excellent support from the CEO of My Brain (my wife) and my parents, who looked out for a guy in a very difficult predicament. MUCHOS GRACIAS!!

            It’s always nice to feel loved and cared for, though I’m trying to take my independence back, even if it will be a while before I’m hiking these waterfalls freezing in their tracks as eastern Pennsylvania hits deep freeze (another 20 some° day here). This was my post from last year at this time... better days in Heberly Run State Gamelands 13 than a hot spell in my office). The other guys just went back and said it's more intense and beautiful this year. I guess I'll have to live vicariously through their incredible photography.

            Lots of positive messages came through. It felt good to read them all, even if I didn’t respond to all personally past a “like.” They still meant a great deal.

            So yeah… I’ll give you 6 to go on from this:

1)      COBRA is a good thing. When you leave a job, you have time (about a month) to continue great healthcare, even if payment comes out of your pocket. My wife’s is good, but my continued COBRA… better.

2)      Don’t cheap out on healthcare or doctor visits (even if it means payment plans). Cool cars and overpriced wants aren’t needs. Well, unless you want to live fast. I'll choose to live life over an extended time any day.

3)      When the doctors / nurses walk through and talk about your condition with one another, join in. Otherwise, it’s like they’re observing the behavior of zoo creatures. That’s no fun. Also, when they ask your name to make sure it’s the right patient for the medication, don’t tell them your name is Kid Rock like he does at the beginning of Bawitdaba. You can think it, but don’t do it. Remember, they’re there to help, and not everyone gets strange humor (and no, I didn’t do this).

4)      Tell people about your Parkie concerns. If you have fear of medication interaction, say so. If you get tripped out when overwhelmed, say so. I did have to tell people of both, but when people know, especially with PD face / voice / get me out of this mode, it’s best they know it’s not them, it’s us. However, they still have to play by PD’s rules, no matter what is required or "normal." Also, don't take it personally when they don't get it. This stuff can't always be assumed, so be gentle with them while they adjust, no matter how much you might want to scream that you want to be alone / cry / shout / etc..

5)      Be thankful and support those who love us through the Shawshank Redemption sewage pipe we’re crawling through in our PD sick condition. Remember, they’re down in the trenches too. (Love you, Heather, Mom, Dad, Beth, family, friends, and staff!). We may have PD (even if it doesn't have us), but when people love us, they have it, too, even if they don't have the tremors. There's no exclusivity contract to who else feels our pain.

6)   Thanks for reading this and giving your support. It means a lot.

It's a Not So Wonderful Catharsis / I'll Be Sick for Christmas REVAMPED OCTOBER 2018

AUTHOR'S NOTE: This story details the beginnings of my aspiration pneumonia, which is written about HERE when I was diagnosed with it. I didn't know what pneumonia was prior to the hospital. I've had bronchitis before, and I felt this was just chest crud turned into bad bronchitis. WRONG! When in doubt, see a doctor ASAP!

See also THIS and THIS for more of my return to the hospital for hypoxia (after aspiration pneumonia) and more about aspiration pneumonia.

            Eleven days ago, my wife and I left the world of Pennsylvania behind and headed for New Orleans, where it is possible to pray to the God of Candles and Michael J. Fox at the same time for salvation.

            I couldn’t make this up (hence the photo).

Despite the fact that the life waiting for us, primarily my search for a second job, was in front of us, it was an amazing trip. I ranked it number one of our trips, though my wife put Mexico and Jamaica in front of it because she’s a water person, and let’s be honest, despite seeing gators, nutria rats, blue herons, egrets, and Virginia rails in the Cyprus swamps and taking a steamboat on the Mississippi, it’s just not the Gulf of Mexico or the Caribbean.

            In fact, there are 3 rules in NOLA and one of them concerns all things aquatic. 1) Consider everyone drunk. 2) That’s not water in the puddle. 3) Consider everyone drunk.

            All the same, NOLA is amazing.

            When it comes to my decision, I put my time in NOLA out front of the islands for feeling perfectly isolated from all of my negativity, which is in itself amazing, and the enjoyment we felt in the French Quarter, the Plantations, the Garden District, the graveyards, and the city proper. Simply put, from Mardis Gras costumes and float builders’ crafts to creole food and music on every corner, it was a great time. I will say parking is “hella” expensive (as the kids would say), but if you prepare, you can mortgage your house in advance or sell a kidney to travel cheaply. BTW, Parkies, if you’re going to travel, consider this advice from "he of the candle."

            I won’t elaborate on the trip just yet, because that’s a post for later, but I will say that in hindsight my favorite moment was sitting in a Willie’s Chicken shack, eating Southern style fried chicken, and M.I.A.’s “Paper Planes” came on the stereo. As 2 40-something people, we were there, in Simpatico, singing the lyrics and making the noises (cash register and gun sounds - MIA isn't singing "I Got You Babe") in unison. It was that feeling of being in synch with one another, enjoying everything in spite of the difficulty waiting for us when we came home. It’s like when my wife sings Christmas songs with my amended lyrics (“Walking in a winter wonderland with Pookie!”) and doesn’t think about it. Becoming one in a relationship doesn’t just happen. It takes time.  

            As the weather and travel gods were shining on us before we got home, almost everything was a breeze. Sure, our hotel wasn’t perty, and it got completely cold at 2:30AM after being a sauna at midnight, but at least that didn’t seem to be ghost induced (I did look up murders when I got back – just in case – after all, they say ghosts make a room cold and this was happening every night). This small comfort was just “odd,” unlike not giving towels that wrap around a body or offering extra pillows.

Thinking about it now, perhaps, I inherited a spirit or inhuman entity at St. Louis Cemetery #1, Lafayette Cemetery, or Metairie Cemetery. Fortunately, there are no scratches on me since leaving town (and I know that one is my fault – future blog post this week). Nevertheless, despite that problem, we got free upgrades in our seats (row 2! Wide seats and quick exit) and we breezed through car return and luggage to head out to a hot lobby in the airport for a couple hours. Life was relatively good save the start-up business hipsters talking Forbes lingo, but we can’t have everything, can we?

So there we were, set to return home as we stood up at our seats, and all of a sudden THWACK!

I had just been whacked by some dude who looked like Snoop Dogg swinging an expensive purse roundhouse style as he rushed the exit and proceeded to whack other people. This too is real, my friends. Baltimore Airport is apparently where it’s at.

            When we got home on Friday, I sat on the sofa, lounging out comfortably, and then, a few hours later, I got chills and fever, not Tom Jones Style either. I got hot and cold, not Katy Perry style for that matter. Instead, I got a visit from Mr. Heat Miser and Mr. Snow Miser, who have been alternating running ragged in my body since that night. Some moments, I shiver. Other moments, I am shirtless and sweating.

            So yeah... Parkinson’s people get hot flashes. Apparently, they alternate with cold flashes during sickness like this. I guess I lost the health lottery again because the hot flashes create hyperhidrosis (see my old post on that) and then I wake up in a lake of sweat. I drank over 100 ounces today (not done yet), because I’m currently sweating and I plan to tonight as well (not by choice). I'm definitely going to need a reserve. Mind you, the house is in the high 60s°! It’s not like I’m in the United Arab Emirates or Death Valley! I'm in Amish Paradise, Pennsylvania, where we have buggy parking at our Wal-marts!

Today is the first day I’ve been mostly headache free (though not for all of it), but I’m rundown, weak, and flu-ish, which leaves me to be a big baby for my wife and parents to take care of (IT IS GENUINELY APPRECIATED THOUGH). Other than to take care of an extra Christmas present for the wife, I’ve been inside since coming back. I’m not leaving today or tomorrow. I’m in recovery mode, big time. I don’t even see myself leaving for chocolate iced donuts with Bavarian Creme (don’t feel sorry for me; I have chocolate chip muffins).

            So yeah, it has become necessary to give you the Parkinson’s Foundations medication warnings (red words are theirs) so that I can let modern medicine and not candles or pyramids improve my health, even though I'm sure MJF would be happy to send me a good vibe via the scented candle votive.

If memory or thinking problems are present, take caution with drugs that may be sedating (such as Sudafed) or that contain an anticholingergic (for example, Trihexyphenydyl, Benadryl, Cognetin, Parsitan). Because of memory and thinking issues, anticholinergics are only rarely used to address cough and cold symptoms.

Cough syrups with pain medication (such as codeine) could lead to memory issues, thinking problems or sedation. If you take one of these medications your memory and thinking should be monitored as confusion could lead to falls and other negative consequences.

Pain medication (such as meperidine) can interact with other medications and can result in sedation.

It may be useful to temporarily stop momoamine oxidase (MA0-B) drugs (such as Selegiline, Rasagiline, Azilect, Zydis selegiline, Xadago) to avoid drug-drug interactions with Cyclobenzaprine, Dextromethorphan (often found in cough medicine), Meperidine (also sold as Demerol), Methadone, St. John's wort or the pain medicine Tramadol. Talk to your doctor before making changes to your medications.

Psuedoephedrine, Phenyephrine and Phenylpropanolamine can be found in any cold or flu medication and could increase blood pressure and possibly increase the risk of stroke, especially in those with high blood pressure.

Aspirin, acetaminophen and other nonsteroidal anti-inflammatory drugs are usually safe, but can have side effects (particularly gastrointestinal).

Antihistamines can sometimes cause drowsiness, but many people with PD can tolerate them for short courses.

Looking through online advice, I found a generic form of Mucinex, which was OK-ed, but to be sure, I’ve been off the PD stuff since I started Saturday. No point taking chances. I’m good tremoring away if need be.

Basically, right now, my body feels like it’s been kicked down a flight of stairs, drug back up said stairs, and kicked down the steps again. I’m generally avoiding cold air and motion, so I cancelled family get-togethers for Christmas Eve, Christmas Day, and have felt pretty sick since then, which led to feeling really low on Christmas Eve. In fact, while watching It’s a Wonderful Life, not necessarily the happiest holiday movie, but one of the best, I had a catharsis of sorts (like George Bailey), and all of my emotions drained out through every pore in my body all at once for the better part of the movie. Something about not being able to watch people open Christmas presents and be with family, you know? I was glad to have my wife there to comfort me because it was heavy, but necessary.

Not to detract from the tons of other stuff causing my present way, I should say I’m a big fan of Christmas and to lose out like that felt like the Year without a Santa Claus or something. Just the feeling of so many cards unsent, last minute presents bought, and only setting up 1 tree and some decorations just felt so “un-festive,” though we did little gifts for one another. Let's just say heated shiatsu neck massage... oh yeah!

I realize with PD, medication issues, job issues, and lack of time, something has to give, and that night it just gave. Yeah, there were lonely Christmases in the military. For instance, the dorm in 1993 never felt like a holiday other than the fact it was supposed to be a holiday. I’ve also been sick for Christmas before (2006 – we all were), but this year, it seemed like an opportunity missed because of so much traffic congestion from so many angles. Call it the feeling you get of being late for an interview that should have been a gimme or something.

Normally, I’ll give Gary Paulsen his due in situations of survival and life and death, but for moments of emotional burden, sometimes, we have to just let it loose in the best way necessary (there is a place for faith of Eastern and Western origin, stoicism, existentialism, and emotions). It’s like when we release, we can be us again. Thus, this year I cleaned out my brain so I can get to making a plan again.

That said, right now, there’s nothing to do but get healthy and make some good plans for the weekend. 

I Wish You Had More Time...

            As the term ends and I get set to go off into the “Wild Blue Yonder,” I contemplate life and how 48 hours of time about 2.5 weeks ago changed everything and took away so much of my time over the days since that time transpired. At the beginning was a room management issue dealing with students using profane slurs against groups of people. That night, my tires were slashed at a different school, along with those of 2 other school employees. While another suspect seemed likely and affected said person's life in that wrong time after the wrong actions kind of way, it turned out that it was just 2 kids “joy slashing” (why we must make sure we don't jump to conclusions of who is guilty ABOUT ANYTHING that is done. Unfortunately, the teens who did this stupid and costly mistake made the mistake of coming back for more tires, which they did, but they also got identified when they came back (hoodies and darkness protected them the first time). Needless to say, I had to get my tires replaced, my car towed, and a rental car until I could take the time to get back to do it so that I wouldn’t lose vacation time (even with insurance, it still cost me my own money). Then, in the middle of the next day, I found out my one job officially ends today. All 3 were a major blow to my life, and the combined 1-2-3 punch made me think about life and where it's going as another term ends with the need to grade papers in the coming days (as well as other catch up stuff) when I originally had (and still have) other plans that are less “analytical of writing quality” and more expressive of joy and happiness.

            Because of all of this, I think about the action movie Man on Fire, starring Denzel Washington. I really like the one part where he hunts down a guy who is involved in the kidnapping of Dakota Fanning, and he tells him, “I wish you had more time.” While the movie portrays it in a darkly humorous revenge moment, the concept of wanting more time makes a lot of sense for anyone, especially a Parkinson’s person like me. Thus, I am going to list 20 things I wish I had more time for on this cold Friday (especially as I reflect on how my condition will someday strip me of this time; thus, I have no time for time wasters).

1)      Time where my medicine is working and I don’t have exacerbated symptoms or a need to get into the doctor or I have to readjust to a new medicine while hoping it works.

2)      Time where I don’t have to explain the Parkinson’s mask.

3)      Time to enjoy with my wife for more than ½ hour or hour before she sleeps.

4)      Time to plan my godson Big D’s treasure hunt that his brother and sister will help him with (oh yes, it will be that good) because he appreciates The Curse of Oak Island.

5)      Time to be with my extended family in a fun way

6)      Time to plan Christmas gatherings and get some presents I need to buy

7)      Time where I don’t feel that being mindless with video games or Netflix is the answer to another long day (though The Office is hilariously enjoyable)

8)      Time to edit the last 400 pages of The Rules of the Game.

9)      Time to get to writing the next book, whether the Parkinson’s book or my next book (Intersections - the 2,000 page mamma jamma collection)

10)  Time to read other books.

11)  Time to hike and be surrounded by trees

12)  Time to blog more since this will inevitably serve as the skeleton for the Parkinson’s book

13)  Time free from worry about my health, now and in the future

14)  Time to grade papers before the deadline next Tuesday

15)  Time free from worry about the stress of jobs I am working at (i.e. grading time).

16)  Time to write Christmas card addresses, so I can mail them

17)  Time to get end of the year CDs ready for friends

18)  Time for end of the semester get togethers with various friends, which I had to pass up on due to other obligations

19)  Time to do the dishes and laundry, as well as other chores

20)  Time to sleep in as opposed to 4-6 hour nights.

If I could go back in time…

21)  More time before I had to pay bills

22)  More time not doing whatever caused my Parkinson’s

23)  More time for fun with others and less for work

24)  More time to appreciate the early 90s of my coming of age (great people, great music, summer dresses, time in England, seeing Europe, etc.)

25)  More time to do physical stuff instead of eating at TGIFriday’s and building a belly.

26)  More time saving money

27)  More time studying subjects other than the ones I liked

28)  More time doing anything other than going to the mall while in high school

29)  More time spent not being cantankerous about life

30)  More time appreciating the small things and choosing life.

So what do you wish you had more time to do?

Smiling, not Smiling

For people with Parkinson’s, every day can be Halloween since we carry our masks with us. Due to bradykinesia, our facial features are slowed down. It’s hard for non-Parkinson’s people to understand this. They just think of us as “moody” or someone who “freaks people out.” It’s a daily struggle, and it’s something we’re conscious of. I know I am.

            It’s definitely something that makes it hard to want to work with people since everyone is really “touchy” nowadays. Everyone has an opinion. We want smiles. We want our way. If we don’t get it, we cry sexism, racism, or some other –ism instead of wondering, “What else is going on here.” Granted, it’s not easy to say, “I have Parkinson’s” for everyone. There’s also not always time to get into the whole rigmarole of bradykinesia, and not everyone is into just taking the, “Oh, it’s the PD thing” explanation.

            I get it.

            But see, much of it is the PD thing, so we have to accommodate and consider our futures based on people interaction or permission to put up a huge neon sign that says, “Even though I’m not smiling, I’m happy. I do show it with grumpy face when I’m moody (as opposed to straight faced and even keel). Thank you for your consideration. I’m happy to help you.”

            However, for the person with PD, it’s all about being the man or woman in the mask. While I never thought of myself as Quasimodo or the stinky kid (I do shower and use deodorant), this is an interesting quote on it from the Michigan Parkinson’s Foundation:

The person with Parkinson's disease doesn't project an approachable persona. The loss of some of the control of the face and head muscles creates a stare-like feature that is referred to as the "Parkinson Mask." The eyes don't blink as much; the smile, if there is one, appears forced or is of a short duration. The stiff neck and shoulders remind us of Frankenstein. There may be uncontrolled movements that vary from excessive to a Zombie-like absence. The hunched back is a reminder of the bell ringer from Notre Dame. There can be a funny gait, drooling, an unkempt appearance, and - heaven forbid - a body odor! This all adds up to an approachability that is uncomfortable, if not repelling.

If contact is eventually made, further dissonance is encountered. The voice of a Parkinson Person is often raspy and lacks volume that is not perceived by its owner. Any exchange of conversation is followed by a request to repeat what he has just spoken. Sometimes, no attempt to hear is resorted to. As the Parkinson one speaks, there is a tendency to run the words together, especially in a telephone conversation.

If a request is made to help communication by writing down the message or idea, then another Parkinson hardship is on tap: the lack of coordination causes handwriting that is barely legible.

…Yawning and loss of attention help to pile on the discord.

Fluctuation of moods can add to disruptions. Within the short span of time that medication wears down, a swing in feelings or any sense of well-being can change into a "joyless cranky wanting to withdraw" mood. This inconsistency adds a wariness to the relationship.

The focus in this presentation is not meant to detract from the lofty qualities that are companion to warm hearted people and their care givers. It is meant to raise the curtain on the predominant struggle that too often is buried under the "chin-up" rallying cry that can misdirect some well-intended cheerfulness.

            And so I sit here on December 1, 2017, exactly 10 years after my first date with my wife, thankful that she gets it. 

            I’m thankful for co-workers with PD-affected relatives who get that they need to see it in my eyes (though even that can be off) I’m thankful for all those people who still like me despite my PD issues, since they know I still care. I’m hopeful for the future, but I’m also wondering why so many people are too superficial to ask, “Why?” and who would rather think I just dislike them or am a moody grump.

            I guess I should start with myself and try to understand other people’s moodiness before judging, too. For now, I’m going to move me to the good places and push the haters aside. I've had enough of them for now.

            Life is for living to its fullest extent… even if we aren’t always smiling on the outside (because Parkinson's literally robs us of our ability to do that).

Thanksgiving 2017 - Happy days to one and all!

            As it is Thanksgiving, this is the time for being thankful. In the past, I wrote a huge list of things that I’m thankful for.

            You can view it here.

            This year, I’ve chosen to list 12 of them simply and wish you a beautiful, happy day with family, friends, and thoughts of a good life. No point reading a long article, when I can make it short and sweet. Parkinson's is not on the list because, well, I'm not thankful for it (though I do feel positive about what it's taught me about life). That said, I am thankful for all of you who read my stuff, help me, and help each other. Keep fighting your fight and choose to live life in the happiest way you can.

1.      My cognitive ability. All it takes is having medications mess with this to realize, yeah… this is a really important thing we often take for granted. This also includes my ability to bring out the cognitive ability of others. I still can't express enough gratefulness for my time working with Ashley (who also had a 2nd place on another essay, she just wrote). If not for her, I'd be thinking about what teaching isn't, instead of what it can be.

2.      My number one caregiver, my wife. Much love to you now and always.

3.      Having days like last Saturday, where my wife and I did the Philadelphia museums for the Terracotta Warriors (beyond fantastic), Rodin's 100th, art, history, culture, and togetherness. Best day out in a long time.

4.      People who push their limits and do great things for themselves and others (in 1 example of many, major props to my wife for dropping just under 52lbs on a very strict diet that keeps going). I also really appreciate the visions other people see of life, such as this picture by my friend, Rusty (Whipple Dam). I need to find a place for it on my wall.

5.      My entire family who support and are there for me. I haven't posted this picture, but this is of my cousin Ben, who met Debbie Gibson. As a lover of 80s music, this made him really happy.

6.      Living vicariously through youngens who smile and enjoy life. When I educate and advocate, it’s not to make life better for me. My path is where it is, at the very least. My hope is that these kids get a PD free life full of happiness, memories, and love. This is Lydia and Dylan... 2 of the 22!

7.      My editor MaryAnn, who just finished editing her 1,400^th page of my writing. WOW! Much thanks! Here’s to me getting off my butt and finishing draft #3.

8.      My imagination and the free flow of written ideas in my head (and places that allow me to express them).

9.      Beautiful vistas and scenery to visit (this is French Creek with Neil and Pete).

10.  Friends who are there for me emotionally and for fun.

11.  The students who created my cover for my book (Tyler and Caleb).

12.  Having a dedicated and knowledgeable bilingual tutor (Justin) in the lab to work with me (there's another one when I'm not there). Trust me; it makes a difference for many students.

Here's a song that's filled with lots of energy and Icelandic joy (memories of that are a good thing, too!). Sigur Ros - Hoppipolla