A More Selective Team: The Need for Fewer New Members

         

           Back when I started this blog, I began by stating:

            Currently, there is a commercial on television that features an average human being doing something that is spectacular in an everyday kind of way. When it’s halfway over, the person reflects that this must be how it feels to be Odell Beckham, who is a New York Giants player, scoring a touchdown. When the reflection is over, Beckham is also shown reflecting his football celebration as this is how it feels to be that other everyday person made exceptional. There are several of these commercials, and they all work well because they relate to people’s desires to have the accomplishments of their life understood on a celebrity level.

            And so it seems that in life, we find ourselves relating to many people who do and experience things like we did, somehow hoping that they can look to us, too, for inspiration. Perhaps, it’s even possible to ask ourselves if by experiencing and overcoming these extreme situations simultaneously, we must all have something in common. However, that’s not always true. For example, Kurt Vonnegut referred to things like the camaraderie of being Hoosiers (his own personal example) as a granfalloon. Here, this idea of a “failed karass” reflected how people put stock in superficial things to establish a relationship with other people. Here, he may have been onto something with our association of people we don’t know as people who are like us.

            Then again, this might not necessarily be true.

            For instance, by the definition of shared experience, I am in an exclusive group that includes such luminaries as Michael J. Fox, Mohammed Ali, George H.W. Bush, Johnny Cash, Salvador Dali, Pope John Paul II, Mao Tse Tung, Casey Kasem, Vincent Price, Roger Bannister, Billy Graham, Kirk Gibson, Charles Schultz, Robin Williams, and the father of Wayne Gretsky amongst others. There are a few names on that list that I’m not letting in even though by definition of the requirements to this club, all you have to do is have Parkinson’s disease.

            There has to be some level of exclusivity to keep some of the riff raff out so that the rest of us don’t have to relate to certain nonredeemable historical leaders.

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           It's important to know that we're not going it alone when it comes to any rough ride that we're about to face. Famous people can do wonders to make other people aware of things that they or those that they love are going through. Here, I'm a firm believer in letting people know about medical problems related to Parkinson's and its related co-morbid conditions from firsthand experience. I personally believe that we have nothing to lose and everything to gain. I'm always humbled and thankful that people choose to read and listen to my words.

           Nevertheless, I'm not an A-lister or even some Kathy Griffin D-list level person. For this, looking at someone like Dale Earnhardt Jr. promoting proper medical treatment and awareness for concussions or Sandra Day O'Connor stating that she has dementia - most likely Alzheimer's, we can see a certain level of awareness for treatments and medical options. Their bravery and notoriety allow them to pave a clearer path to hope for people everywhere.

           This is exceptionally important when it deals with neurological concerns since the brain is the computer running the whole system. Here, it's true that neither person is a Parkie, but our shared neurological issues have some parallel paths, and for that, any person standing up to express the need to know and to cure / treat problems is a role model in my books.

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           However, not every member of our team is someone who merits a story in the newspapers. However, that doesn't mean they're any less important. Last week we added 2 new members to the Parkinson's community who were in some way connected to me. I found out about both of them in Facebook messages. The first was a friend of a friend. In this case, the person I knew was devastated at what happened to her friend. How could she not be? In the second, a childhood friend's father, who I knew since I was in 4th grade (35+ years of my life), also received a diagnosis and so his son was looking for advice.

           By virtue of being a writer / out and about Parkinson's activist, I hear about a lot of people who have medical / neurological issues. I'm always saddened to hear about people's plights. I know that people don't choose these paths, but I wish there was a better screening out process to keep people from going through hurt.

           "NO! Put down that case of cancer. That is not for you!"

           If only it were that easy.

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           With regard to the new Parkies, in both cases, I offered advice and connection as I offer it to anyone out there. Advising: it's what I do personally and in another week, professionally (though in that case, it will be regarding education). Nevertheless, there are 2 more people on a team that should have no members, not even the riff raff I chose to exclude day 1. Nobody was watching, and they picked up something that sucked their dopamine dry.

           There should have been someone there to keep the condition away. In short, someone had one job to do, and wham.

           If only it were that easy.

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           Put simply, this condition sucks, even if many of the people who have it are some of the nicest, most caring people around. They support each other. They push themselves. They campaign for the cure. Many of them are people we might hang out with in a life that is free of Parkinson's, dystonia, neurological badness, whatever. Still, I can't help thinking there should be a door guard outside the club, like at Studio 54 in New York City, who would tell us all that we don't meet the standards of being a part of this membership. I'd happily take myself back to life as I used to know it and leave the "costume" I was in behind.

           I'm sure our team's newest members would, too.

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           As kids, we grew up believing that there was strength in solidarity with people who were just like us, so we fashioned our identities in much the same way. Even before they called it "keeping it real" or saying "keep it 100," our little subgroups made us play the role to the required points of the definition so to not be seen as a "poser."

          Not everyone could do this well, though. In this, some people lacked something inside that made them feel fake or touching down for a temporary stop-off in the game of life as they flitted off for something else. Other people, like the gate guards at Studio 54, knew how to weed them out and leave other people hanging out on the outside waiting to get in. Many of them left, and we never missed them. Hopefully, they were happy wherever they landed.

           As we get older, save for the midlife crisis moments of reliving missed youth or buying that Corvette, our stopping points tend to be more permanent. There's no more wild and cool haircuts. Chances are we couldn't pretend to be twenty or thirty somethings anymore because we just couldn't handle the difference in ideology to those younger generations. However, sometimes life gets in the way of our standard identities and routines, even this late in life. We find that all of our qualifications just changed and we find ourselves in the middle of a new game, on a new team, with no clue where or what we are. All of our perfect little plans are done, and we're washed up on a new desert island.

          What then?

          I'm glad there's so many different elements of this team (and many others like it) to be a part of. Not every one of them is for everybody, but there's enough shared experience, empathy, and openness to welcome everyone who comes to the door.

          I just wish people would stop knocking. This condition has got to stop. The room is too full already.

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ON A SERIOUS NOTE... welcome back to blogging Perky Parkie. Glad you're better.

Strength to Keep from Going Under

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
2. Anger
3. Bargaining
4. Depression
5. Acceptance

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).

That said, I know that's not real. For that reason, I push on with how some of the answer is to stay loose and stay positive. I know that it's important to never let anyone "steal your sunshine." It might sound odd to say, but if you're holding the wolves at bay, even if you're in the dark about what comes next, you're in a better place than someone who is thinking 3 stages ahead and living scared. Yes, we're all afraid of the end stages, but we're not on a timeline (I tell this to myself, too, so that I believe that), so live for the good times and shake off the haters (Dan, this means you, too). We have to believe that there are good times ahead and positive moments to experience.

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.

The Reset Button / Health Union's Parkinson's site.

I haven't been doing a lot of writing for this site (or me) lately for a couple reasons. In short, they all lead to feeling exhausted. In short, when I get home, the bed is calling, and I feel like hitting the reset button a fair bit, though restful sleep hasn't been very easy to do.

As with many of you, there comes a point where we're pulled from all ends, and something has to give. Hence, I've taken the past couple days to do nothing much after having my between the trees therapy turn into a forced march up to Hawk Rock on the Appalachian Trail in Duncannon, Pennsylvania, on Friday afternoon.

Usually, a fairly short hike like that (2 miles), even with elevation gain isn't that rough, but I just haven't felt 100% in about 3 weeks. Friday was a slow walk with a bunch of stops, though the top was worth it, as it always is. However, I was a sweaty hyperhidrosis mess very quickly. Nevertheless, since then I've pretty much just binge watched television and slept.

So yeah, I'm definitely feeling Parkinson's these days for many reasons. The first of these is that I've seemed to run out of time somewhere between here, there, and everywhere. The second of these, as I alluded to, is that I've been pretty run down with sciatica, allergies, and seasonal changes. These hit me hard, and they're tougher with limited ability to take medications and Parkinson's.

The third of these is that my Amantadine is now affecting my sleep. What this means is that I sleep really hard when I fall asleep, but when I wake up a few hours later, I have to force myself back to sleep so that I get enough rest to avoid the afternoon siesta. Other nights, I find myself up later. Some medications do this. Of course, there is a lot of dreaming, too, but at least they're not scary. Gotta love Parkinson's and sleep.

The final reason is that when I have been writing, I've been writing for Health Union's Parkinson's site (I've been doing that since April). I encourage you to check them out.

They have a really great platform over there with lots of great writers like Allison "Perky Parkie" Smith, Michael and Gretchen Church, Karl Robb, Angie Hott, and Maria Deleon as well as comics by Peter Dunlap-Schol. These are just some of the writers that have been published recently (my apologies to anyone unintentionally left off).

I recommend checking these writers out. They're all really good, as are the editors who post a lot of great info on Parkinson's and the other conditions they cover. You'll definitely like their site for the professional help and the voices of Parkinson's.

My latest posts:

Zombie Walking 101: Parkinson's Gait and Us

My wife informed me that we have a friend’s Halloween party coming. With over a month to go, there’s so much pressure to be something cool. I’ve already been informed that the character “the Nun,” from the movie of the same name, will be popular this year. My wife said, “You’re allowed to pick your own costume this year.” This made me smile. Last time I wasn’t, so I went as a ringmaster and she played the bearded lady. Costumes are expensive (and never used again), so it’s important to work with what we have. Can we borrow or recycle or create something cool? Thanks to my Parkinson’s gait being solidly established, I can easily play the role of a mob victim with a cement shoe, chain gang member, or a zombie.

Read the rest HERE.

Sensory Overload: A Mount Vesuvius of Anxiety

My wife and I were traveling to Virginia for Labor Day weekend. With her at the wheel, she was able to navigate the rain, traffic, sounds, and lights so I could count down the miles while listening to Pitbull repeatedly scream, “MR. WORLDWIDE!” Besides, that combination of mental effects and anxiety is way too much for my Parkinson’s state of being. On Route 81, which runs parallel to the Shenandoah Mountains, rush hour on Fridays can get dicey. For the most part, we knew it was going to be a long drive in the dark. Hence, my wife chose to battle the road to keep me out of overload status.

Read the rest HERE.