In trying to recover from the post-nasal drip that's been eating away at me and being limited on my medications, I've been taking it easy inside, for the most part, watching way too much Netflix and Hulu. For the past couple of days, this meant re-watching the early seasons of The Walking Dead, which I haven't seen since I first watched them in 2014, prior to playing catch-up to begin season 5. For those people who watch the series, you understand what the show is about. For those who don't, somewhere beneath all of the zombies and outlaw bands of people roaming the land after the zombie plague is / was a solid story about characters fighting for survival and keeping people going in spite of a horrible virus that had infected everything. If it were just 8+ years of zombies, it would have gotten old quickly, so what keeps it going is the characterization.
In looking at Parkinson's, that's a lot of what we do with this batch of nastiness that hit our brains and stole our dopamine.
For Parkies, while we're fighting our own real life monsters, you know the tremors, mood fluctuations, dystonia, dysphagia, dyskinesia, bradykinesis, cognitive issues, movement problems, loss of independence, and sleep issues that we face, we need to keep ourselves and each other up as much as possible. Granted, it's impossible to be up all the time, and it's impossible to keep the symptoms in check 24/7, but we need a plan to stay active, stay upbeat, and stay us at all times because it's obvious that we're going to hit the wall of confrontation at some point.
And when it comes, we need to be rewired strong enough to take the waves and the hurricane that is about to hit us and stay standing.
For caregivers, there's a front row seat to the game, which, frankly, sucks to watch "in sickness and in health" and / or the loss of family and friends as we know them (and there's nothing we can do to stop it - just comforting the patient with our "there, there" and "thoughts and prayers").
Here, caregivers need places where they can go to recharge before Parkinson's damages by association. In this, Parkies are not contagious, but the suffering sure is (truth be told, I can deal with a lot of things, but I absolutely loathe watching what Parkinson's does to my team).
There are a lot of things in this Parkinson's world that weaken our outlook on this whole game. Sometimes, they leave us with the nothing feeling of apathy, ennui, and general "don't give a hoot-ed-ness." Other times, these beasts consume us with the eating away feelings of depression and hopelessness. The existential crisis that is knowing we're becoming shades less than what we are is like starring in an updated version of Invasion of the Body Snatchers.
From the minute we notice the symptoms that need to be diagnosed and named to the diagnosis itself, there is a world of fear and uncertainty. Assuming we make it to this first crisis of faith in what hand we have been dealt, who we are, and where we're going, as well as the "why did this happen to me?" / "how could something this horrible be allowed to be?" / "how did it happen to me?" questions, we are faced with the 5 Kubler-Ross Stages of Grief.
1. Denial and Isolation
Depending on what symptom we notice first, we can figure out what is going to be the way that we will be tested on this journey, at least for the first part.
Just like with all other things, the key is to "be here now" and to slow down the movements that are affecting us. We need to approach them in a calm, logical order as long and as often as we can. Sometimes, this is realizing that I'm the car's passenger white knuckling it as my wife drives at night in the rain. The key then is to close my eyes and work on my breathing.
It's going to be OK. No cars are going to crash.
If it's tremors, we may start to wonder when will our hands become too shaky to do things like button our clothes. When will our shaking hands touch someone else and cause them to feel startled? When will someone else question what's "wrong" with us? When will we become too unsteady to work / drive / live on our own?
If it's cognitive, we'll get caught in the "when will we lose our ability to think / process / speak / communicate" trap? With these problems come issues of loss of independence, abandonment, and being a smaller part of what we once were. How can this not be big and scary, especially if we witness other people who are suffering or hurt by the process / side effects of the condition?
I know it's not optimistic to write these things, but they're things we face, so confront them, we must. When we do, we need to know who we can go to and how. We need to know how we can move away from these things in the now and build up our strength for the future.
Once lost, strength takes a lot to rebuild. It's not just hoping that "it goes the other way, too."
I've read a lot of books about survival mindsets, but I find that they only go so far, though I do have my favorites. There's no human contact in a book, so I'm glad to have an option like therapy, though with only 3 sessions in so far, it's still in that getting to know you stage. We talk about life, love, the pursuit of happiness, and fear, anxiety, problems, and life changes. It's nice to have another mind to offer solutions and alternative ways of thinking.
It's often hard to express the emptiness and pain of our lives to those closest to us since we don't want to bring them down. Nevertheless, sometimes we just need a hug and a big dose of love, even if we don't want to get into it all. I'd like to think intimacy is enough in a time like this to just understand everything in a tactile embrace without the exact words. Why say things out loud to make them "that real," unless we have to when the listener need not hear it confirmed? I guess that's a man thing with our silent conversations of what can be understood and not stated.
But what if we have to?
I know it's not for everyone, but theological opportunities can provide a foundation and a code that allows people to get through the emptiness. Granted, not every religious person (or therapist) has a working knowledge of the effects of Parkinson's, but they do know the effects of aging and the loss and pain that goes with that. Sometimes, it's good to have alternative avenues for discussing these things to keep home happier. As I said, therapy can also do this.
For me, early onset Parkinson's offers many challenges. I would say the biggest one is finding a meaning for my life.
Having taught for 17 years, I chose to give up the classroom in May. I often wonder if I could still be in the room, but then I think that at some point in the future, the time will come when I can't. I know there are things I could still teach, but at the same point, a nearly 3 hour class is a long lecture, individualized instruction time, class management, and a lot of what ifs as well as moving parts.
For me, management is the first skill to go. With shaking hands, how can we be seen as serious in instances of redirection if we're shaking? If we're shaking, is it because we're uncertain about our field? If students know we have Parkinson's, will they think of us as mentally dysfunctional if we forget something? Will our bosses think this? What about our co-workers?
As with any job concern, it's often understanding how we're perceived that is the issue.
For me, I know what I can do and what I can offer, even if my blank, unsmiling face doesn't show it and my occasional exhaustion prevents me from looking confident in my game all the time.
Because of this, it is in those type of moments of doubt that I (and we) lose our strength in all things.
In the Navy SEALs, there is a bell that recruits can ring if they choose to quit. Many times during the intense period known as Hell Week, this happens. The exhaustion, suffering, intensity, and pain get too much and people's minds and bodies give up. They wave the flag, and after being asked if they're sure, they usually say yes. Stories abound regarding ones who chose to come back for another shot. Even if they come back, eventually, they always quit again. Once their mind is made up, it's over.
I think this applies to anything in life. Thus, the question becomes, "how, when we're tempted by doubt and defeat, can we regroup before we get consumed by this enemy?"
I'm not sure I know the answer. Like you, I am tempted by a lot of bad stuff. None of this is fun. Like you, I am physically, mentally, emotionally, and financially tortured by this game. I hate it, and I wish I could be magically cured so that I can be non-Parkinson's Dan (whoever he was).
There has to be a reason for this.
Mike, my therapist, and I discussed this. We talked about staying a "teacher" even if I'm not in the classroom. In this, I can write my lessons as essays, which is easier than speaking them. People can read them and learn from me. I like that. It's something that keeps me going. It's why I do this whole blog thing (since I'd like to believe that I have something to offer).
Another important step is counting the little things that go right instead of multiplying the bad things. It's been kind of rough around the campfire lately with seasons changing (that seasonal affective disorder thing, allergies, the looming future, and aspiration pneumonia fears after previous hospitalizations for chesty stuff that didn't get better). Is much of it unrealistic? Most likely. Is it real in what my mind is telling me? Yes.
Do I need to find the strength and happiness to keep from going under? Definitely.
Do I need to push aside my unrealistic excessive thoughts of how I look, thinking I'm a walking case of Parkinson's 24/7? Hell yes.
Sometimes, just the simple act of writing it is cathartic. Never surrender.