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Saturday, February 17, 2018

Hiking Lessons for Mindsets and Feet: Having the Right Equipment is Everything (Especially for Mild Dystonia, Parkinson's, and Hyperhidrosis)!!

            In August of 2013, I had this grand dream. After getting off my chubby butt for the better part of 4 months, I felt that I could do a 5-6 day trek (with backpack) of the entire Standing Stone Trail (under 75 miles or so at the time if you include the distance from parking lot to the sign). I learned many things on the 20 miles of the journey I fought my way through over the 2 days I spent attempting the trail. Most of them were in line with, "Don't think; it can only hurt the ball club." Others were along the line of "rock hiking is slower and tougher than regular hiking."

1)      For me, there was no reward for starting and not finishing a task that isn’t accomplishable. Sure, I went out and experienced a part of it, while learning what not to do next time (a lot of what I did), but that's it. If you're doing something like I did, you know that we get our pictures and memories of what we saw, but if the goal is the finish line, we lost if we don't make it, and if we only go 1/3 of the way, we lost big. Thus, it’s important to have realistic goals and redefine success as pleasure and opening our minds to the flow of losing ourselves in the moment of productive accomplishment. Mihaly Csikszentmihalyi and his take on flow / optimal experience would be proud of us if we could find something we enjoy that much that we can make time vanish while creating / achieving (as long as it's not video game victories).

2)      “Getting to the top is optional, but getting down is mandatory (Ed Viesturs).” From a book that is entitled No Shortcuts to the Top, I should have been learning that a solid overnight back and forth would have been better to start (and at this point in my life, too), but I was electing to go all or nothing, so yeah. Not close and no cigar. I won’t say I’ve given up on over-nighters, but I’d just prefer to hike in and out to shelters instead. Now that I'm diagnosed with Parkinson's, life has changed BIG TIME. I’ve learned I’m more about the experience of seeing neat things than hauling a backpack day after day without a shower or without fresh cold water. As a Parkinson’s person with hyperhidrosis (I wrote about that HERE), I absorb and sweat out water quickly. Having almost 200 ounces of water on a sunny summer day doing 23 miles at Blue Marsh is about half of what I really want for something like that (I also want Clif Shots and gummy blocks - another of my favorite things I wrote about HERE and in its concluding part HERE. This is when I learned how they (and companions) could get me back from Arizona's Wave in 1 piece).

3)     On that note, I learned that there’s no reward for getting seriously injured or killed in some remote wilderness. Emergency rescues cost money. Hospital prices can be brutal, even with insurance (and sometimes, insurance won't cover it). The key is to train extensively and push ourselves just beyond our limits, not to 5 times our limits. Besides, we have people that love and need us. Remember, don't do stupid stuff or s**t.

4)     Always have an emergency way out. Companions for hikes are good, too. I went solo, which was pretty much my only option because I didn’t know anyone to go with. I had met and been influenced by one thru-hiker at the time (Lakeland, who is pretty much one of the premier long-distance elite hikers out there. At the time, he had accomplished the 5,500 Eastern Continental Trail during a year-long hike that also encompassed the Appalachian Trail), and the hike I was going to be on wasn’t going to be his type of hike. Hence, I did mine as a solo journey. Day 2, I woke up with blisters. Ten hours later, I was desperately trying to call my wife from an area of zero cell reception. I finally got in touch with her, but to put it in simplest terms, it wasn’t easy for her to find the unmarked dirt road that I was hiking to (and she was driving a Mini!). Let’s just say, at the end of the day, it’s nice to have someone who loves us enough to keep searching after driving 2 hours to rescue us from dehydration, exhaustion, and blisters. It's even nicer when said person doesn't say, "I told you so."

5)      Don’t carry more weight than you have to. I did. As the character Katz from Bill Bryson’s A Walk in the Woods learned, people will hate your guts if you throw excess weight into the forest. Food weight doesn’t go down fast enough to make it easier to ascend big mountains. Water weight also adds up for us hyperhidrosis types (he says while growling at the ultra-light types!). It doesn’t need to be compounded with lots of extra clothes. It also needs to be replenished quickly. Conserving water isn't smart for a hyperhidrosis hiker.

6)      Having the right equipment is everything! For instance, when the trek was over, I replaced my walking stick with Black Diamond trekking poles. And yes, like Oprah would say, “These are one of my favorite things.” As Lakeland said, they put us in four-wheel drive. It’s true; they do. They also help my Parkinson’s balance and my dystonia left foot as I ascend mountains and traverse boulder fields. Having them and my other essentials for all season (bear mace, Microspikes, and an ice ax) make a hell of a difference in being able to make it through. Someday, I'll be using mine as a "cane."

Prior to the trip, I had bought an REI tent, backpack, sleeping bag, ground cover, and other little supplies to take my Camelbak daypack (another one of my favorite things) and turn it into an overnight pack. I bought a ton of Cliff Bars (another of my favorite things) and dried food since I had no stove to cook with. And yes, they added up in weight. Knowing what I do about the need to stay hydrated on a pretty much dry trail, I'd rather see the trail over spread out days instead of a week straight. And this is what I currently do and have done. It’s better for my Parkie self to stay alive than to push it too hard.

That said, for a hiker, I would say that the most important bit of equipment other than water is whatever happens to or goes on our feet. Now, I carry blister pads. If I went any kind of distance in 2 days, I would have some kind of healing lotion for my paws as well. It might be weight, but anything that can soothe the feet is a good thing.
This brings us to footwear.

As a Parkinson’s guy with DYSTONIA in my left foot, I will never wear sneakers again, unless it’s a house to car to house trip. Even wandering around Wal-mart will produce a painful sensation on the mid-foot after a short distance (the three cuneiform bones, the cuboid bone, and the navicular bone). This discomfort feels like a nasty consistent annoyance that multiplies the 90° angle that my toes form. And yes, that's painful, too. Believe it or not, in just a short less than a tenth of a mile distance, this makes casual walking painful. Running is out for me, and fast walking, when I don't wear boots, can really hurt, too. Sometimes, I can walk through it if I'm feeling like pushing it, but most times, I can't - even if I try to push it. 
Given the choice of giving up only one of toe or mid-foot issues, I think could walk through the mid-foot, but the toe rearrangements hurt like hell. Thus, sneakers are a thing of the past, even if I had finally got snazzy running ones in 2014 (in the time dystonia was setting in / before PD was diagnosed). Now, it's all shoes that hold my toes in place.

I didn’t hike with sneakers that time. Instead, I had an old pair of ill-fitting Columbia boots, which got wet and created blisters. When I came back, I decided I would pay whatever it cost to never have blisters again. Instead, the guy from EMS put me into a pair of Keen Targhee boots for about half of the price I was willing to pay ($140 - I would have paid over $200 if they said these were blister-proof). He was awesome! I now have a second pair of similar boots from Keen, and I love them. I can see myself getting a new pair when my REI rebate comes in, too. 
By the way, there are regular Taghees and Targee 2s. When it comes to my experience and happiness with them, let’s just say they’ve kept me warm, dry, and safe while crossing streams and enduring Rocksylvania’s finest boulder piles and woodland floor brush. It would be nice to get paid by them to shill, but at this point, I'm just writing out of love for the product.

Additionally, I paid for better-fitting hiking socks, which may have been more expensive, but they provide cushion and avoid blisters. As any hiker will agree, comfort, lack of injuries, and ability to withstand the trail make all of the difference in the world. As a Parkinson’s guy, my body is generally an inferno, so I’m OK there, but my toes get cold (it’s the name of my game). Put simply, I’ve had numb toes sitting at home while just wearing shorts since the rest of me was toasty. I know; I’m an enigma and a conundrum. Thus, I like to have warmer socks on my toes. Not like my snazzy hospital socks, but you get the picture.

This week, I had to replace my old, dead slip on work shoes with nice ones for an interview. Recently, I’ve found that the old ones and even my water shoes / sandals were becoming more susceptible to dystonia pain, so just like with hiking, I found I needed a tight shoe to keep the 90° toe angle from getting in the way of annoyance. I can’t wear hiking boots to an interview, but I do wear them when I go anywhere that involves walking. That meant I needed to bring the CEO of my brain (my wife) along to pick out a good pair for all colors of pants. For work, this involved getting a shiny new pair of dark brown Dockers shoes from Kohl’s, which is one of my wife’s favorite things.

And for all that I wore them so far, I’m happy. The look is sharp and the dystonia is under control. Ideally, I like slip on shoes better, but to look professional instead of relaxed (slipping off my shoes to go stocking footed), I’ll put up with the discomfort by wearing thicker socks and counting my Benjamins before the paycheck arrives. I'm a big fan of money. I have a little, but I’d like more
The same goes for hiking and walking. I don’t want to give up my movement or my freedom to explore, so I’ll keep looking to stay on my feet with poles, shoes / boots, and socks.

             I hope you do, too. There are many more open roads to explore!

Guardian Angels and Messages from beyond the Grave: My Gram's 100th Birthday

            February 13th is my grandmother’s (Gram) birthday. I’m not sure if I’d remember it if it weren’t in a group of days that includes my mom's birthday (the 11th), Lincoln's birthday (the 12th), and Valentine's Day (the 14th), but every year, I always make a note of wishing her a happy birthday so that I can reflect on her life and how much she meant to me while I was a kid growing up. 

            On the other hand, I couldn’t tell you my other grandmother’s (Nana) birthday. It's not that I didn't feel close to her. I did feel that she cared about me, but it was just done with a strict Irish Catholic overseeing. Here, I do think she did and does her best to ensure that I don't drift from religion and that type of meaning in life. Perhaps she's the impetus to the need to go to church or to do things with church-related groups, which I do. On that note, I did go to church for the first time in ages to get my ashen cross for Lent this year. I'm sure she had something to do with that, especially my decision to follow the priest's homily to give up the hardness in my heart and to love while doing kind deeds and everyday sacrifices. 

             This year, I started to have this feeling about a week before her birthday that I really needed to go to my Gram's grave to visit her. There was something in me that wanted to tell her how things were in my life since the last time that I really saw her, especially regarding how much she’d like my wife Heather, my nephew Dylan, my sister’s husband Matt, and his kids CJ and Val, who have joined the family since her passing. Another part of me wanted to talk to her about how surprised she would be at how much everything changed since she passed (November 1994). Finally, a large part of me wanted to tell her how much I missed her. In that moment of overwhelming need to visit her, I found myself overcome with emotion, which signaled me I definitely needed to be there.

            I'm not sure what the last non-Alzheimer's memory I have of her is. By the time I came home in November 1990 to show her my Air Force uniform, dressed in it when I picked her up, she didn't know who I was. By that time, she was scared of a lot of things. She had old memories of my dad, but eventually, she lost all of them to Alzheimer's (I wrote about that HERE).  
            In this feeling of needing to see her, I wasn’t sleeping or hallucinating, let alone daydreaming, but instead, it felt like I was receiving a sensation / request that I had to fulfill. I've never had a moment like this before, so I'm not really sure how to describe the train of thought I experienced. All I can say is that I really needed to do this, so nothing, not traffic, other obligations, or a car in need of body work, was going to keep me from going to visit her.

            I drove over to the cemetery on Tuesday to pay my respects before I went to teach class. When I arrived, it was drizzling slightly, so I drove extra slow down the Churchtown graveyard path looking for the elusive "Glass" on the grave belonging to her and Dan (the grandfather I never knew as he died before my dad was 2) before I arrived at her resting place. When I got out, I saw a Christmas wreath and the dates of her life. Somehow, I knew what the year of her birth was before I got there, but I really didn’t know. To be honest, a part of me thought maybe she was born in the early 1920s, but I was wrong.
            February 13th, 1918: her 100th birthday.

            As I stood there crying, I found myself laughing at how she must have been calling for me, the grandson who came over weekly during his childhood to play Star Wars, build forts, and watch television like Different Strokes, The Facts of Life, and Saturday Night Live when Buckwheat died (she wasn’t sure if it was real since they played it pretty straight other than Eddie Murphy doing his over the top imitation). And there I was, plastic flowers in hand to give her a colorful bouquet that would survive the Amish Country Pennsylvania winter, crying my eyes out because on days like this, I could really handle making a pillow and blanket fort in her house instead of facing the world.

            In the days I knew her, she did fill it in puzzles and chain-smoked, while always being there for me with a place to go, love, and weekly presents of baseball cards or Star Wars figures. In the middle to late 1980s, as I said, her Alzheimer’s disease kicked in and devastated her and hurt our family as well. Now, we sit wondering if the bomb that went off inside of her is hereditary for those of us who have descended from her position on the family tree (as we wonder how far back these medical concerns go).

             Gone were the days of listening to Mel Tillis and taking me to the local movie theater to see movies that I wonder if she actually could tolerate (such is being a supportive and loving grandparent). I prefer not to think of those days. 

            In the same way, I don't think much of who she was growing up or during the days of my dad growing up other than remembering she was a single mother at age 16. To this, she had a warning to my dad that carried over to me (if you're going to do something that could have you end up being a dad, be sure it's with someone that you love enough to be with if that situation occurs). Knowing how her life effectively stopped in many ways, long before it ever began, the world of being a single mom with family helping raise children from the 1940s to 1960s and living life beyond that as a housekeeper at the Hassler Home, I think that's fair advice.

            Anyway, when I came home from work, I bought some Valentine’s brownies, and my wife and I celebrated her birthday because it’s what she would have wanted. Somehow, it felt to me that she knew how to get in touch with the world by finding me in that vision. After all, I'm the person who won’t allow certain parts of the past to “die that third death,” thus assuring that people live on infinitely through words, deeds, and images. While her former apartment is now so changed it's hard to see it as anything other than the address she lived at since the building is completely different, I don't mind as much as losing memories of her image in Florida or her dream to go to Hawaii, which my parents fulfilled. 

            More importantly than going down Memory Lane, Heather reflected how she’s my guardian angel, here for me in my time of Parkinson’s as she has some clue of what it means to have a neurological condition that can devastate everything. I have to say that there’s something comforting and reassuring in knowing that I have a whole lot of someones looking over my shoulder, no matter what side of the grade said person is on.

            For that reason and others, while I find myself skeptical to certain experiences, I truly do believe in life after death and divine intervention. I believe in fate, and I believe in ghosts. I believe in Heavenly-directed paths to where we're meant to be. I also believe in the evil side of the coin. That said, while experiencing the blind in my bedroom fly up at 2:00AM, the first night we moved in the house in 2009, plus other incidents of casual appearance that happened here may seem spooky, not all incidents of haunting and appearance are meant to be scary. Like the image of my wife's mother appearing as a butterfly at her sister's wedding or our great niece Ava appearing cheerfully to her sister Lydia, the other side isn't always about monster movies.
             Sometimes it's just about checking in and showing some love.

Tuesday, February 13, 2018

Aspiration Pneumonia and the First Day of Spring Training

            The great American singer John Prine once wrote, “There were many great days and many not so great days. I tried to turn them all into great songs.” As an introspective person and a writer, I believe that. Some days, we’re on Cloud 9, and life is as good as can be. Other days, we feel like crud as bad things happen, which Forrest Gump confirmed that they do. Those aren't fun days, especially when our pain puts other people in worry and pain.

            Since the night my wife and I returned from New Orleans (22 December), I haven’t been well due to a burst of pneumonia that saw me miss a whole lot of everything from Christmas to last weekend. I'm not sure what did me in. Could it have been the guy on the plane running from the back to the front swinging a saddle bag at everyone (really)? How about the famous NOLA cemeteries or the ghost of Marie Laveau or the woman in the witchcraft shop putting a hex on me for taking a photo of her shop? So many possibilities to consider. In the end, it only mattered that I was nailed with horrid nasty lung gunk like some gator was looking to take me out!

            Over that time I didn't feel myself, I spent parts of 6 days in the hospital for the aforementioned pneumonia (which I wrote about HERE) and a second trip that saw me filled with hypoxia and chest crud. Those are not fun at all (fortunately, after tons of tests, there was no pneumonia, sepsis, or zombie virus), nor was not having enough blood for IVs and routine blood. They were going all over my drained self with butterfly needles. I felt so bad for both of us!

            As a “Parkie,” the fear is that people with chest crud will concoct aspiration pneumonia, which is a brutal murderer of our people. And no, I’m not exaggerating (see Michael J. Fox Foundation for more info).
            Put simply, we Parkinson people have trouble swallowing since EVERYTHING in us slows down. When your mom told you to not eat or drink so fast because it would go down the wrong track… yep. That’s it. Stuff goes into the lungs, and bad stuff happens.
            The risk factors other than death (according to the Merck Manual) include:
Impaired cognition or level of consciousness
Impaired swallowing
GI devices and procedures
Dental procedures
Respiratory devices and procedures
Gastroesophageal reflux disease
What makes a lot of respiratory problems worse is our inability to take a whole lot of medications, which I wrote about HERE.
The good thing is that NOW, I feel better. On the first day of Major League Baseball’s spring training, the world is all future and no past, as Lou Boudreau would say. Sure, there's lots of nagging issues, but on the first day of the season, it's all possibility. Why not believe that it's our year and our time to raise the trophy that speaks of greatness and how things go the other way, too?

My wife, family, and friends rallied me out of the hospital on Saturday, and now I’m working through my to-do list. Heck, I even got out walking on the local rails to trail (1.5-1.75 miles of a cool breeze and sunshine) for the first time all year. It wasn't a long walk, nor was it an overwhelmingly scenic walk, but it was a great walk nonetheless. In the end, that's all that matters!

In many ways, I feel glad to be alive and better so I can do all of the great life things I want to be able to do. Going into the CT machine scared me like nothing I've felt in this PD battle. It's hard to explain because generally, I'm positive and / or stoic (except when I'm not), but right there, I wondered about what if it was worse. 
It very easily could, but it wasn't, so like Nietzsche and Kelly Clarkson, I go on stronger than I was.
Sitting here now, I know my only choice is to take it to PD and chest crud like the Rock would since we know Dwayne "the Rock" Johnson can do whatever he puts his mind to. You gotta smell what the Rock is cooking.

But even though I feel like this is the it I need to follow, it's not that easy, though Bob Feller had it right.

Thinking about this now, I think about how there’s a scene in the TV show Scrubs where the one character (JD) reflects his friends' lives and medical issues and contemplates what will be their demise (diabetes, blood pressure, and anxiety, if I remember correctly). That's how I felt in the CT. 
At that exact moment, I felt helpless being away from my wife as I thought about my lungs and how I walked into the hospital unable to really breathe (O2 in the 80s – it should be mid 90s). In fact, I felt like the guy in the Salem Witch Trials (Giles Corey) who was pressed to death (though I wasn't screaming for more weight as a show of resistance to a corrupt legal system). What was going on was that I could hardly breathe or speak. Fortunately, they got me back and nebulizered me with lots of TLC and professional care. Those hospital workers rock. Now, they have some fun contraptions and meds to keep me good, and yes, I'm feeling much better. However, prior to that, I was getting winded on 20 yard walks on flat ground... not even including stairs. UGH! That's not a hiker's life!

Now that I got my unconditional release from the hospital, I feel like a new man, but what is to come? After all, my PD journey is only 6.5 years old. I'm sure it has more tricks for me, not to mention things it can take or bills it can generate. 
Here, some people might wonder if my desire to get back on the top of a mountain in the near future an unrealistic expectation or the crossing of a personal scum line that says, “No more?” For me, I say that I might walk slowly, but I’ll do what I have to do to keep going up those 1,000 steps. I’ll draw my goals list and color code it for what I finish today while prioritizing what I can do tomorrow.

Nevertheless, I still know that the potential for future diagnoses and what is lurking under the bed to come for me is scary on a level that makes medical bills seem benign. But let's be real; bills, even with insurance, are still scary all the same. I guess it’s fair to say something will get us all, but at the same time, I’m not ready to be gotten. I have too much to live for, so hit the highway wendigos, chupacabras, and lung nastiness!
It's time for Jimi, Stevie, and me to chop mountains down with the edge of our hands.

Thursday, February 8, 2018

The Myth of Snow Days

            It starts with one teacher’s whisper.
            “Six to nine on Wednesday.”
            “That’s four days away.”
            “Trust me.”
            Saturday becomes Sunday. The week already feels long, and it hasn’t begun.
            “MNO now has it up to double digits based on conditions in the Midwest.”
            “Depending on the wind, the storm could travel north.”
            “A near miss might still produce seven inches.”
            “A wide miss would leave us with three.”
            “Many of our students live in the sticks. They don’t plow there until the storm is done. No superintendent is going to take a chance on getting students hurt.”
            “That’s it; I’m buying!”
Monday arrives. Students are chattering about accumulation.
“Hey, Teach, what are you doing with your snow day?”
            “Teaching you.”
            Typical response from a student:
            “I’ll be snowboarding with my new gear.”
            Proper teacher response to a student:
            “Remember that near-miss we had after Thanksgiving? You thought that was a three-day weekend. It wasn’t, so do your homework!”
            Teacher’s inner monologue:
            “I don’t want to get my hopes up for nothing, but I really think this prediction is for real. A day off to sleep in and binge-watch Netflix… Awesome!”
            “If it snows that much, you’ll be shoveling all day because you chose to buy a laptop instead of a snow blower. That’s no sleeping in or Netflix.”
            “How bad can this snowstorm be? It’s been really cold, so I’ll be shoveling powder!”
            “If you believe that, you’re going to need to schedule a massage in advance!”
            It’s Tuesday and school has ended. For two days, both students and teachers lacked any enthusiasm. Assignments were still given, but everyone is procrastinating as everyone’s fate is about to be decided.
“If school is out tomorrow, they won’t open on time Thursday. That’s a two-hour delay!”
            “What if it misses us?”
            “Think positive!”
Everyone is buying the hype and the bread, milk, and eggs.
            Response from Mary the Weather Forecaster at XYZ:
“We’re starting to see the western half of the state experiencing serious accumulation. Mind you, our forecast for the east is still dependent on many variables and what happens over the mountains in the central part of the state, but I find it likely that we’ll be getting five inches by 10:30AM. We’ll know more at 10:00PM.”
Response from the school’s superintendent:
            “If I call this for nothing, I’m going to face parents’ wrath. If I make them wait until tomorrow morning for an answer that we already know, they’ll hate me. I wonder what Jenkins did over at Central?”
            Response from Jenkins:
            “Why does everyone look to me to make the first call? I did it once with the call-offs last February when XYZ predicted that blizzard. Now, they expect me to do it every time. At least that time, we had flurries before we got two feet of snow and a three-day vacation.”
            Response from Snyder at Union:
            “I’m done waiting for Jenkins. I’m calling this on the strength of Mary the Weather Forecaster on XYZ’s proven predictions. After all, she is a proud graduate of Union.”
            Response from Griggs at National:
            “I’m not calling anything until morning, no matter what Snyder does.” 
            All of the local schools call off, except National. Flurries begin at 7:00AM. By 1:00PM, there are three inches of slushy snow.
The teachers who had to shovel complained about the heft of the work. The kids slept in until 10:30AM, and texted friends all day. Many of the adults complained about finding babysitters until they were reminded that snow equals icy roads and pavements, and kids could get hurt. In the end, the day came and went for everyone except Griggs, who was still answering irate messages about the inconveniences of his school’s early dismissal.
            The next day, everyone got a delay and an extension on the homework until the next time the class met since procrastination won. In the end, the snowstorm was more work and time to make up some other way, and that meant summer schooldays.

            For the next two weeks, everyone remembered the myth of snow days, at least until MNO posted an article about a three-foot blizzard waiting to happen.