Think / Able

Think / Able

Wednesday, March 21, 2018

25 Things I Learned about Parkinson's since I Was Diagnosed.

Up until immediately after my Avalanche Day on September 27, 2016, all I knew about Parkinson's was:

1) tremors
2) Michael J. Fox
3) Muhammad Ali
4) I felt pretty uncoordinated doing the tests in my neurologist's office.
5) Being given 90% odds of having it made my wife cry. Having it made her cry again.

Since then, I have learned a lot more.

1) Despite waking up the next morning filled with strength and confidence, which are essential, I was very naive to be thinking that would be enough. There are still a lot of things that are coming down the pike to be afraid of (freezing, aspiration pneumonia, "bridge out" signs in my brain, more trips into a CAT Scan), but I have learned that life is a choice. As long as I can, I'm going to choose it in whatever form I can and keep doing the things that make me Dan (and I'm going to celebrate them! Besides, if I don't, who will?!).

2) I have learned to use People First Language for myself, and as time has gone by, I feel more conscious about talking about what I can still do in Stage 2 when some people who are in later stages and the same stage have lost the ability to do a lot of things that I might appear to be bragging about (I am most definitely not). However, I'm not going to stop doing or pushing myself to enjoy them, but I am working on empathetic understanding in writing so that I can promote positive enjoyment of life and not "I can do this; look at me! I am the most wonderful person ever!" (that said, there is a picture of the Hawk Mountain wall I climbed last summer in my bedroom to remind me about what I can push myself to do).

3) There are many great support groups out there. Unfortunately, in Stage 2, I don't have the ability to talk about things like DBS, any interest in talking about medical marijuana, or experience with where I'm going other than I read about it (in a book), which seems like what many questions online are concerned about (I'm glad there are people out there to share answers with and get them from). I do like the articles and updates people post, but with being a teacher, I have access to some serious databases as well as a wife that knows her medical information to keep me informed of what is what when my neurologist doesn't "keep it 100" in our visits. I do follow posts, but I don't always join in on the 50 people respond to a question posts. All the same, I do find them valuable. That being said, I enjoy being able to share with you and see what's going on with my fellow Parkies. When the DBS days come, I'm sure I'll learn more from others who will help me with that decision in the same way I have learned about the bad effects of some medicines.

4) I have learned about the UPDRS (Universal Parkinson's disease rating scale). After hospitalization, I went up from 4 to 37. Personally, 4 seemed like a good medicine day, but now I'm in stage 2 for realsies. Yep... here's to the gift that keeps giving. Those next 30 points are going to be a ride of fear, compensation, and adjustment.

5) I've learned that almost every symptom I have is "normal" to a Parkinson's life with its medical "gifts," stress, and depression, and yes, that sucks. Sciatica? Check. Hearing? Check. Not being able to smell my own gas? Check. My big toe hurts? We'll see.

6) My biggest sadness is how my condition affects those close to me. However, I'm not going to die tomorrow. Yes, I do like being asked how I am and offered hope and well wishes. I like people knowing that they can joke with me. I'm not going to take offense. Really. I have a strange sense of humor. I like when people can understand that and still enjoy it. There's a difference in wishing me dead and calling me "Shakes the Hiker." That said, I'm happy for the family and the love. Without them, it's a lonely world. Besides, if I accuse someone of a hate crime for calling me clumsy, it's not for real. It's just how I take seriousness out of the situation.

7) Hyperhidrosis - That extra sweat / really thirst thing, which I get really bad on the trail (and while sleeping in bed). It has a name, and it's connected to PD. I wrote about that in detail HERE.

8) I found out that getting Lyme disease at the same time as Parkinson's was not as fun as getting a free toaster with a purchase. Lyme is the great imitator, by the way. It's nasty stuff, and you can learn about it HERE.

9) Bradykinesia - I've learned that anything that can go slower on me will... except for frequent urination. I'm as confused as you. That said, this leads to #10, which is my second biggest fear (by the way, #3 is my tremors going nuts when I'm having to deal with a serious issue with a student).

10) Parkinson's Mask - I wrote about this really well HERE. Nothing like being accused of having resting bitch face / being a moody bastard when it's not true.

11) Dystonia / Restless Leg - I wrote about this a lot more thoroughly HERE. Important note: My left foot is pretty messed up and I visually walk "oddly," but with tight shoes + hiking boots, I manage a lot better. Other people's dystonia is much more severe. These solutions won't help those people.

12 ) Cognitive Issues - My only experience with this was the side effect of a medication I quickly quit. That sucked. Additionally, it scares the bejesus out of me to think more is coming, someday. My mind is important to me as a writer / teacher / human. I'd like it to function well for a while.

13) Lethargy / Apathy / Depression - All those great plans... yep. If only I don't feel too tired to make it happen. It's "normal" for Parkies, so know that we have to motor through it.

14) Substantia Nigra / dopamine / Lewy bodies - Without all of the technical terms, I learned about how the body makes dopamine, which is a WD40-type pathway protector / happiness maker. Sometimes, the body's defense mechanisms (genetics) are messed up and the body goes after these dopamine neurons like they were zombies. Interestingly enough, after this attack takes place, the body is filled with zombie-type cells (Lewy bodies). In a way, we could say they go wild and mess up their prey, leaving zombie-nastiness in the brain. I wonder if this is how The Walking Dead will end.

15) MAO Inhibitor (Monoamine Oxidase Type B) - Azilect is my go to medicine, and it works, but it's expensive without insurance. Nevertheless, without it, I'm toast. All that stuff in 14 is pharmaceutically dealt with by this.

16) Dopamine Agonist - Ropinerole (fake dopamine) is what keeps my tremors under control. So far, it's doing well. All that stuff in 14 is pharmaceutically dealt with by this.

17) Livedo Reticularis - not a pretty side effect I had from one of my meds. Because of this, I had to stop it. This isn't my legs. It can look worse than this. Mine were just beginning to turn purple.

18) Aspiration pneumonia - the number one killer of Parkies. Really. A story in 2 parts, which begins HERE and ends HERE. Knowing what will most likely take us out is damn scary. As I go for more doctor visits for sleep apnea and a real deal swallow study, I'll be talking about this and dysphagia a lot more.

19) Hallucinations / Sleep issues - Now I know why I have wild dreams and crazy sleeping habits. That said, I really like Eternal Sunshine of the Spotless Mind. Who knew it would stream in my head while I sleep? I also wrote about DREAMS and COMMUNICATION WITH MY DECEASED GRANDMOTHER in past posts.

20) The best is yet to come, even if there are some rough things to come, too. Guys like Jimmy Choi are living proof of Muhammad Ali's attitude when he said, "It ain't bragging if you can back it up." Choi still runs marathons and competes in American Ninja Warrior despite his PD.

This is the same attitude that baseball great Ted Williams had when he didn't sit in the final game of the 1941 season to preserve his .400 season batting average. Instead, he went "Beast Mode" in the final doubleheader to take it to .406. Here, all of us Parkies can raise our game a little bit and find ways to enjoy life, even if we can't do a lot of this.

If you choose to enjoy the following video of the Baseball Project celebrating Ted Williams, remember it's NSFW.

21) My whole body is super-warm these days EXCEPT my toes. Go figure. Here's to wool and heavy hiking socks to keep me warm.

22) Man, I hate the feeling of being overloaded mentally. When things are out of synch in a cacophony or flashing world of lights, I go out of control with them quickly. Ugh. Not fun or my favorite at all! I wrote about this feeling HERE.

23) You'd be surprised what you can give up if it means being alive while staying on the straight and narrow world of what Parkinson's and its meds take from you. I know there are things in my identity, which I will lose someday; however, until that day comes, I'm going to choose to experience them if I can. In the meantime, I wave goodbye to alcohol, sleeping in the same bedroom, clipping my own fingernails, going shooting with my dad, the speed of my typing, sleeping at normal times, not needing a disclaimer, not having to worry about what things to avoid, not worrying about the Parkinson's process on pretty much every one of my body's functions, not knowing that my condition will cause people sleepless nights, and holding a camera steady while shooting video, to name but a few. Obviously, the list above is an iceberg, but you get the point. In the end, happiness is other things.

24) Speaking of disclaimer explanations, HERE'S MINE.

25) That whole thing about a big vacation bucket list...
A) San Francisco is up next with the Yosemite waterfalls.

B) The Great American Petroglyph Tour to see the Great Gallery before dystonia ends long walks for good.

C) Italy

D) Washington / Oregon

E) Yellowstone

Of course, there are other vacations and trips with people that don't involve walking like those will, and they're on there, too, but yeah... there's something about sharing beautiful images with people we love, especially if the bomb inside that went off before is going to go off worse in the future, but for now, there are things to do and "miles to go before I sleep."

I just want MORE TIME to get to them.

Sunday, March 18, 2018

The Big 100... 10 Under-appreciated and Simple Pleasures of Life

Thank you for reading the last 99 posts on my blog. In honor of 100, I thought I would list 10 of my favorite simple pleasures of life. These may include aspects of my favorite things, but they won't include the normal things that we would go to.

For instance, of course, our spouses and significant others are usually our favorite things (as are vacations and the like). That's obvious. Family is in there, too. For me, I am a music aficionado, writer, reader / knowledge accumulator, photographer, traveler, hiker, baseball fan, and supernatural enthusiast, so listing things like my favorite historical baseball players as a Top-10 is off the list (though I will give a shout out to Nick Hornby's High Fidelity for its love of Top-10 lists - and yes, I prefer the book to the movie).

1. After a long travel day / hiking day, getting a shower is a marvelous thing.

2. Getting a haircut after my hair has grown so long (!) that I feel like a hippie. When I was young and in the Air Force, I wanted longer hair. Now, I want my wife to let up on her no "Bruce Willis" edict.

3. Holding a book that I wrote in my hands for the first time. Other people have held my new book!! (this is my cousin David), but I haven't. T-minus about 1-2 weeks!

4. The planning stages of creativity are amazing. All of the free writes and rough drafts are great, but typing that first word to putting creativity in motion.... priceless. For that, I'm over 40 pages into the new book already.

5. Learning something new every day / Helping others learn something new every day!

6. Making mix CDs. It was more fun to make mix tapes because it was an all-day act of love, but arranging music to enjoy later... awesome!

7. Looking at old pictures / assembling photos into collages and thinking about the memories of those moments! This picture was after my first plane ride to NYC. My aunt Toot worked there, and her company hooked us up with a limo!

8. Looking at pictures that other people took and thinking about how, someday, I'll go there (why my wife and I get along so well!)!!

9. Living vicariously through the happiness of others! Be it Dylan and his snakes, Amanda getting birthday presents, or the images of Lydia in photos we see of her, how can I not be happy seeing how happy others are?

10. Not letting my Parkinson's get the best of me! We all have down days. We notice our abilities slipping. We fear the future. However, when we don't let that get to us and we do what we can anyway... ROCK ON!! Choose to live life tougher than our antagonist.

Thanks for 100 acts of support through 100 posts! Here's to 100 more! Keep being great!

Saturday, March 17, 2018

Rest in Peace, Marie Setley...

As we get older, we see our lives change as we lose some of the people who meant the most to us. Some are families, and others are friends. Additional people in the form of co-workers and other people who we knew from our day to day life vanish as well. Other times, we lose the people who were such good friends to our family that they become close to us.

No matter who we lose, it hurts and it leaves an empty space.

Unfortunately, in going on without them, all that we have left is memories of who we once were, but if we play the game right when it comes to those reflections, we get to think about what those stories are and live happily knowing that these people were and are always a part of our lives.

One of these people, Marie Setley, passed on Thursday. She is pictured to the left of my dad. Her husband Dave, pictured to the right of my dad, told me the sad news on Saturday.

Unfortunately, she lost her battle to cancer when it boomeranged back at her after seeming to loosen its grip. To this, co-workers were shocked when they reflected on talking to her recently, and then... well, this happened.

Marie is pictured here at my wedding reception in 2009. Since that time, I have known her as a co-worker and friend for the last decade. Additionally, my parents went to their Maine vacation resort several times and spent friendly time with her and her husband.

To get the phone call of what happened was a humbling honor. To lose her is a sadness.

However, in listening to all of the happy and kind words about her, I am at least glad that she made her life count to so many people.

Remember, we never know when King Kong and Godzilla are going to rampage in our towns or in our bodies. Life is short. In fact, it's too short sometimes. That means people need to take action immediately.

The answer is simple (whatever way you're living now): Live your life so that people remember your awesomeness when the time comes to say "toodle loo!"

Wednesday, March 7, 2018

Ghosts, Parkinson's Hallucinations, and the Adventures of a Supernatural Kid

This is a continuation of the story of feeling my grandmother come to me prior to her 100th birthday this year. That was a powerful moment, and you can re-read about it HERE.

After writing about the feelings gained from the moment of connection to my Gram, this brings me back to real life. Here, I remain willing to believe in an afterlife (religious or ghostly), cryptids, aliens, and evil forces, but I need reason to believe, and I don't believe in every situation down the pike. Even those in my own house, which I will describe experiences of, I need objective or empirical proof. Just like Fox Muldur on the X-Files (which was a great show until the last 2 seasons of its resurrection, though truth be told, I didn’t watch the last season before its death), I am also skeptical because that's what any research requires.

As I wrote in the story of my Gram, I felt a strong feeling she was communicating with me to see her to talk about the family and me. I feel, just like my wife said, that her Alzheimer’s is connecting her to protect me in my days of Parkinson’s.
That said, I can’t deny that fluctuating dopamine levels in a Parkinson’s person create hallucinations as well as our crazy dreams, which I write about both in non-fiction and fiction. Like Jodie Foster in Contact, I must concede this. 
If you'd like to read a great, really accessible article on experiences with this, see Perky Parkie at this link.

However, something in me wants to believe in the same way that I want to believe that the ghost torching I filmed at Chadd’s Ford was also real (though my students, even the paranormal believers, have given me reason to be skeptical).

So what’s the deal? What is real and true? I’d like to say I know my truth, but I’m not sure. I know that later in my house’s history, we had more weird things come back after we thought we had fixed them (more about the earlier things later). My wife experienced these, and we feel that it could have been her mom. However, on her moment's command, we also brought a friend’s husband at the time in so that he could sage the place. It worked since we’ve had nothing since then. We were thankful, and they got dinner for their trouble.

But what of my other experiences?

On November 5, 2009, my Heather and I were given the keys to our new house. While we wouldn’t sign the papers for it until the following Tuesday, we were able to start moving stuff in on that day. That day, we transferred our things into the house in an attempt to make the house our own. However, it wasn’t until the following weekend that we were able to sleep in the bed overnight. That night, Friday the 13th, we went to bed knowing that paying $150,000 plus interest would make the house our own – or so we thought. Instead, the blind on the bedroom window right beside us flew up into the air at 2am.
            We both woke up startled; however, we went back to bed.
            The next day, Heather looked at the blind and found nothing wrong with it, but she threw it away all the same.
            If it was broken, we didn’t need a scare like this again.
            If it was ghosts, then we just needed to play dumb to whatever he or she or they were trying to do to our stay in this house on Park Avenue.

            A few months later, Heather had been redoing large sections of the house. I had been working a lot, so this was her project to keep busy. For those who don’t know, renovation is something that is said to stir up the memories of a house. By this time, she had reworked 1 bathroom, the room that became my office, and the laundry room downstairs. We were also in the process of tearing down the wallpaper in the dining room and the hallway up through to the second floor as well as the wrap around hallway that exists in the upstairs. Unlike actual home repairs that take skill, we found that I was pretty OK at tearing down wallpaper, so that became my job.
            Let me just say, it was some God awful wallpaper.
Together, we had also begun to tear out the wallpaper in the upstairs bedroom as well, so it’s clear that we definitely were in a major house renovation mode. Maybe it was the painting and the fumes (another scientific conclusion), but one night in early February, I woke up half awake / half asleep and thought I saw ghost cats on her pillow. When I told Heather about it at our early Valentine’s Day hibachi dinner a few nights later, she had confessed that she thought she saw someone standing over on the same night.
            There was now a very real fear that something was going on in the house. We commenced to praying for our safety and a peaceful night’s sleep each night. Maybe this finding God in the midst of conflict seems like the last refuge of a scoundrel (as Lisa Simpson would say), but there was something unsettling in whatever was going on. As a result, we prayed for our happy lives from that moment forward. Whether it started out of desperation or true faith, we have never stopped praying since we began this act over 2 years ago, so it’s now a ritual and an important part of our lives in that it has brought us to be in a place that is more spiritual and right with the universe.
            That said, we weren’t going to chance that it was just paint fumes affecting us. We were completely acknowledging the reality that this could be a very real ghost that was choosing to live with us. That said, we did try to ventilate the house a little better, even though it was winter, to ensure no fumes might hurt us.
            It’s important to go scientific when possible.
            Nevertheless, we also responded by writing a Bible verse to bless this house on one of the walls we were about to paint over. While we heard creaking noises in the house since then, it is an old house, it was a long time before we had any incidents.

            From my time as a kid, I have always been interested in certain science fiction, monster, and hero movies. For this, it’s no surprise that I traverse the line of believing in ghosts to being skeptical of what I see. In my top 5 movies, I would place Carl Sagan’s Contact in the same way I would declare his Demon Haunted World and its “Baloney Detection Kit” one of my favorite works of literature, which I excerpt in part here (his work is in red).

            My parents died years ago. I was very close to them. I still miss them terribly. I know I always will. I long to believe that their essence, their personalities, what I loved so much about them, are—really and truly—still in existence somewhere. I wouldn’t ask very much, just five or ten minutes a year, say, to tell them about their grandchildren, to catch them up on the latest news, to remind them that I love them. There’s a part of me—no matter how childish it sounds—that wonders how they are. “Is everything all right?” I want to ask. The last words I found myself saying to my father, at the moment of his death, were “Take care.” Sometimes I dream that I’m talking to my parents, and suddenly—still immersed in the dreamwork—I’m seized by the overpowering realization that they didn’t really die, that it’s all been some kind of horrible mistake. Why, here they are, alive and well, my father making wry jokes, my mother earnestly advising me to wear a muffler because the weather is chilly. When I wake up I go through an abbreviated process of mourning all over again. Plainly, there’s something within me that’s ready to believe in life after death. And it’s not the least bit interested in whether there’s any sober evidence for it. So I don’t guffaw at the woman who visits her husband’s grave and chats him up every now and then, maybe on the anniversary of his death. It’s not hard to understand. And if I have difficulties with the ontological status of who she’s talking to, that’s all right. That’s not what this is about. This is about humans being human. More than a third of American adults believe that on some level they’ve made contact with the dead. The number seems to have jumped by 15 percent between and 1988. A quarter of Americans believe in reincarnation. But that doesn’t mean I’d be willing to accept the pretensions of a “medium,” who claims to channel the spirits of the dear departed, when I’m aware the practice is rife with fraud. I know how much I want to believe that my parents have just abandoned the husks of their bodies, like insects or snakes molting, and gone somewhere else. I understand that those very feelings might make me easy prey even for an unclever con, or for normal people unfamiliar with their unconscious minds, or for those suffering from a dissociative psychiatric disorder. Reluctantly, I rouse some reserves of skepticism. How is it, I ask myself, that channelers never give us verifiable information otherwise unavailable? Why does Alexander the Great never tell us about the exact location of his tomb, Fermat about his Last Theorem, John Wilkes Booth about the Lincoln assassination conspiracy, Hermann Goring about the Reichstag fire? Why don’t Sophocles, Democritus, and Aristarchus dictate their lost books? Don’t they wish future generations to have access to their masterpieces? If some good evidence for life after death were announced, I’d be eager to examine it; but it would have to be real scientific data, not mere anecdote. As with the face on Mars and alien abductions, better the hard truth, I say, than the comforting fantasy. And in the final tolling it often turns out that the facts are more comforting than the fantasy. The fundamental premise of “channeling,” spiritualism, and other forms of necromancy is that when we die we don’t. Not exactly. Some thinking, feeling, and remembering part of us continues. That whatever-it-is—a soul or spirit, neither matter nor energy, but something else—can, we are told, re-enter the bodies of human and other beings in the future, and so death loses much of its sting. What’s more, we have an opportunity, if the spiritualist or channeling contentions are true, to make contact with loved ones who have died. J. Z. Knight of the State of Washington claims to be in touch with a 35,000-year-old somebody called “Ramtha.” He speaks English very well, using Knight’s tongue, lips and vocal chords, producing what sounds to me to be an accent from the Indian Raj. Since most people know how to talk, and many—from children to professional actors—have a repertoire of voices at their command, the simplest hypothesis is that Ms. Knight makes “Ramtha” speak all by herself, and that she has no contact with disembodied entities from the Pleistocene Ice Age. If there’s evidence to the contrary, I’d love to hear it. It would be considerably more impressive if Ramtha could speak by himself, without the assistance of Ms. Knight’s mouth. Failing that, how might we test the claim? (The actress Shirley MacLaine attests that Ramtha was her brother in Atlantis, but that’s another story.) Suppose Ramtha were available for questioning. Could we verify whether he is who he says he is? How does he know that he lived 35,000 years ago, even approximately? What calendar does he employ? Who is keeping track of the intervening millennia? Thirty-five thousand plus or minus what? What were things like 35,000 years ago? Either Ramtha really is 35,000 years old, in which case we discover something about that period, or he’s a phony and he’ll (or rather she’ll) slip up. Where did Ramtha live? (I know he speaks English with an Indian accent, but where 35,000 years ago did they do that?) What was the climate? What did Ramtha eat? (Archaeologists know something about what people ate back then.) What were the indigenous languages, and social structure? Who else did Ramtha live with—wife, wives, children, grandchildren? What was the life cycle, the infant mortality rate, the life expectancy? Did they have birth control? What clothes did they wear? How were the clothes manufactured? What were the most dangerous predators? Hunting and fishing implements and strategies? Weapons? Endemic sexism? Xenophobia and ethnocentrism? And if Ramtha came from the “high civilization” of Atlantis, where are the linguistic, technological, historical and other details? What was their writing like? Tell us. Instead, all we are offered are banal homilies.

I love the archaeological search for treasure of Raiders of the Lost Ark. I also am enthralled with the aliens of Close Encounters of the Third Kind and Independence Day. Weird movies like Altered States and Jacob’s Ladder are fantastic. I grew up a Star Wars kid (so I never felt anything for Star Trek). I watched Creature Double Feature at my Gram’s house. I moved on to the action movies of the 1980s, and experienced lots of exciting movies, eschewing the bloody gore porn for movies like Signs, Avatar, and The Mummy (the one without Tom Cruise). Now, I live on Destination America, Ancient Aliens, and the James Wan Conjuring / Insidious movies. In between, I also got my degree in teaching English, so I read many of the classics. For this, I need character building. Here, origin movies like the first Captain America, Wonder Woman, and even Ant Man work well to give the character life and purpose instead of just showing up. The first Rambo and Jaws also do this well.
Comic book action like the first Avengers movie is a lot of fun. However, by the time we get to Civil War, it’s fighting for the hell of it. Nobody can be shuffled off this mortal coil, so why bother? For a while, Walking Dead has been the same, though they did send Carl to college after his zombie bites. I’m not saying we need to go Game of Thrones because the blood and nudity just overshadow what I’ve seen of it (I quit at the beginning of Season 2), but characters just need to be expendable in that battles against evil create suspense.

Writing with purpose is good, too, and I hope that I have done that in my own books as the characters of Blackrock Canyon take on a life of their own. For as much as I extol the virtue of the serious and academic while I teach, I also like books, whose pages turn quickly. I hope I’ve been able to mix them up well in my own works of fiction, which I share HERE (2 of which are out already in complete form, and one more is out today).

            On a night in early October of 2011, I woke up at 530a.m. to the sound of the ornaments on our Halloween tree singing Rockwell’s “Somebody’s Watching Me.” I had no idea what was going on. Had the motion sensor picked up an intruder? Was there a ghost downstairs? I went downstairs to check on the situation and I found nothing. There was no open door. There were no people in the house. I even went to the basement, which is theoretically the scariest place in our abode.

This is a fact because our house used to belong to an elderly woman named Hazel, who fell down in the basement and died. Apparently, her body gave out from either a stroke or a heart attack, and she was found a day or so later by her daughter. I can imagine how scary it must have been for her since she too had Alzheimer’s. Life can be cruel like that.
For a few years after that, the house belonged to this daughter and her husband. They left the area after they sold it to us, so we were never able to ask them about any incidents in the house – not that we would have been able to broach the subject very easily, but still. There really is no good way to ask how I met your ghost mother (probably a better story than a lot of the CBS show of almost the same name). Heather learned this when her former sister in law drunkenly explained to her family that she was now communicating spiritually with the mother in law that didn’t think much of her. If the family hated her before, they really hated her now. These things just don’t go over well, even in a family that believes in ghosts due to many of the younger girls claiming to have had visions of things that were not quite alive.
Because of the inability to broach the subject with anyone knowledgeable and the decorum, tact, and general fear of being thought that I’m not right in the head, I asked my neighbor Shirley questions that confirmed things such as the presence of cats having lived here. In this, I did it in such a way that we could have just been talking about lingering pet odors instead of some evil harbingers of death.
In addition to this incident, it seems that more pain has existed at this house. The man who Hazel was married to lost a limb in an accident in the backyard. There isn’t much detail on that, but it’s something that seemed to have happened. Apparently, something fell on his leg and it got infected, so it was chopped off. It’s just something that happened. Nevertheless, we have never seen a phantom limb floating through our Siesta Zone or chanced upon a one-legged ghost telling us to get out of his house.

I’m glad for that.
All in all, we never think about it much except at times when things are going bump in the night. Those times have a way of making us remember stories of limbs that succumb to gangrene and the presence of deceased women.

Back on that October night in 2011 when Rockwell's lone hit permeated my house, I was now forced to confront whether I had an intruder in the dining room or whether something from the other side was in my house as the muffled sounds of an eighties classic played out from my downstairs. I went into the basement, but nothing was there. A bug might have scurried across the floor, but that’s not something that would set off a motion detector. It takes loud thumps or dropping things to do this. Thus, I went back to sleep, but it was interrupted again with the sound of Michael Jackson’s voice keeping me from my sleep. 

I went downstairs again, and I did my same checks again, but this time, I took out the battery from the lights and unplugged them as well. Now, I couldn’t get back to sleep and the fire alarm was occasionally chirping.
Did I have something else to worry about? Was my home going to be reduced to ashes? The answer was obviously “no.” It just meant that the batteries needed changed and that the motion detector downstairs was so sensitive that it was picking up on the sound of chirping from up above them.
Nevertheless, for one morning only, it felt like we had ghosts in our house all over again. And with that, I breathed a sigh of relief that nothing was watching me.

            I’d like to think that our protection comes from Heather following the advice of the goofballs from Paranormal State that seem to think that by telling a ghost clearly and directly that the house doesn’t belong to them anymore that there will be no issues with said ghosts.  One time while she was alone in the house, Heather declared to that which might have been or might not have been that the house was ours. Whether this did the trick or not, I can’t say, but I can say that the house has been quiet since then.
            Personally, I think sage helped more, but that’s just me. If something / someone ever comes back, I hope it’s either able to be pushed away that easily or it shows itself as her mother or my Gram / Nana, who I feel have tried to look after me.

            Spookily enough, in my life, there has always been some paranormal force out there looking to interact with me.
            I can remember bumps in the night while I was living on Southgate Street in Bury St. Edmunds. It was an old row home that definitely had about one hundred years of history to it. Nevertheless, it was a time I never thought much about ghosts despite the fact that I was creating ghosts in my life with all of the actions I was doing stumbling around my early twenties and obsessing over my past. Even with those bumps and thumps in the night, this dead world kingdom of England only brings the ghosts that possess people in mental ways that they can’t leave behind. For this reason, no exorcism can remove these demons. Instead, it takes stabilizing life actions and / or little pills that go with therapeutic expressions of understanding to make them go away or at least to diminish their presence. Over time, I’ve left some of these behind, but still, I keep so many more.

As a child, I was first introduced to paranormal ghosts by my dad who told me that Reggie Rothenerger, a person who once lived at the house that we were living in while we resided at 627 Vester Place in Sinking Spring, fell off of my enclosed porch and died. His ghost was living in the cooby hole in the attic, which was a crawl in closet on the side of the house. For years, I never went in the cooby hole or close to the edge of the enclosed porch. On one hand, it seemed to serve a need to keep me away from falling off of the 2nd floor dusty and dirty porch. On the other hand, it created paranoia for edges that I can’t shake to this day. In the same respect, it kept me away from the cooby hole, which was right next to where my dad kept his old Playboys stashed. I only found this out because a childhood friend of mine found them while we were playing in that room. He told me that I could come and look at them whenever I wanted to, but whenever I did, I would always feel nervous about being in the ghost room. Somehow, ghosts and naked women became engrained together in mind. Both of them became elusive to approach and to touch for the longest time despite the fact that it was a Holy Grail quest to see all of the things that were associated with them.

            The house at Sinking Spring was an older house. It was also the place where all of my childhood memories came together to make me who I was. Some of these were humorous, some of these were typical in their childhood nature. Some of these are held close to my chest in a place where I can keep them hidden and never have to think about them again. These memories, like the memories of an odd painted bird that was decorating the dining room wall, are the things that make the house I lived in from 1977 to 1988 so unique and eerie at the same time.
            No matter which of these memories exist, be they the romanticized good or the painful past, I still dream about them in all of their actuality. I say this as a fact despite the fact that I haven’t seen the rooms since 1988 and despite the fact that we don’t have pictures of much of the house.
Nevertheless, my mind is completely certain to what is there. In the backyard, we once had a shed that was old and decrepit. I always felt that it was haunted, too, but that seemed to come more from the cover image of a mystery book that I had as a kid. Nevertheless, the shed was completely removed to make way for a newer shed sometime after we got there. I didn’t have anything to do with it, but I was glad that all of its rotting gray boards and black roofing were gone.

            Since we left, much has changed. It’s no longer the same house as it was when I was a kid. The concrete wall that we had between our yard and the neighboring yards down below us fell and was replaced with timbers. The cherry tree that grew in the yard was cut down because it was so big and messy with big black cherries dropping everywhere in the midst of its growing season. Now, there is a chain link fence between the front yard and the street. There is a deck that was constructed in the back and a new tree now fills the yard. I’m sure there are other changes internally, too, but I haven’t seen them.
            Across the street, we would see the Sinking Spring Elementary School. It used to be open when we lived there, but now it’s an apartment complex. The playground was where I learned to drive a bicycle. I got my first kiss on the left side of the school when I was in high school. On the right side of the school, we would play baseball. Behind the school, there was always a kickball game happening. We also played dodge ball in a circle that was painted onto the back of the schoolyard. In addition, there were basketball poles and a rim, but there was never a net. It was a great place to be a kid, even if the train whistle blew incessantly from the locomotives moving down the tracks that were behind it. Eventually, like so many other things in life, we got used to it. It became the place that we became who we were, for better or for worse, but now Old Sinking Spring is no more. In fact, the traffic pattern in front of the school has been reversed as well so that nothing exists as it did in that glorious time that was the eighties.

            I can still feel the ghost that is Old Sinking Spring though. There’s no denying that it was once there because its spectral force is still here. Sure, much of it was vanishing to new housing developments that all looked the same. The fields we played in were replaced with middle class houses and communities that weren’t part of the world that we grew up in. This has nothing to do with socio-economics; rather, it has to do with the fact that these people didn’t live in row homes and the community existence that we did. Instead, they live in comfortable cocoons that were even more subdivided by their not knowing the neighbors that moved there to be in their comfortable cocoons. Community was gone. Nobody knew anyone. There was just a house to live in.
            There was no home.
            Eventually, we too moved to a new neighborhood, and despite its age being much older than the new housing developments, there was no community there either. It just was. Nobody cared to know anyone. We just lived our lives in our homes and backyards. Instead of being a part of something, we were just a part of ourselves.

            And so Sinking Spring is now another ghost in my life.
Occasionally, I still walk through it in dreams and deliver my papers like I did in my teenage years. I used to dream of home as being in the house that we lived in. Prior to coming home to this house in Ephrata, it’s been a long time since I felt that way.

            With this house we live in now, I feel like we have made it our own. We have established our lives. Heather has used her art to make the rooms special. We have memories here. Maybe someday after I move on, I’ll dream about its ghosts the way I do that house on Montieth Avenue and the apartment in Mount Penn.

            Some things just stay with us and haunt us forever, for better or worse.

Saturday, February 17, 2018

Hiking Lessons for Mindsets and Feet: Having the Right Shoe is Everything (Especially for Dystonia)!!

            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!