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.