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Showing posts with label dystonia. Show all posts
Showing posts with label dystonia. Show all posts

Wednesday, May 1, 2019

The Last Hike to Glen Onoko in Jim Thorpe Pennsylvania - Now Officially Closed


My final hike to Glen Onoko was in autumn of 2016. I had just been diagnosed with Parkinson's, so I wanted to see one of my favorite Pennsylvania hikes one last time as part of a quest to revisit some old favorites one last time.

That day, my wife and I hiked up to the 2nd falls. I didn't feel like walking back and forth across a cold creek on that journey, so we didn't go up to the top of the 2nd falls. I had seen the area past that before. The need to see that final small waterfall again didn't matter that much, especially since I was over-conscious of my balance potentially being "off" at that time.

Having hiked to the top of McAfee Knob since then, as well as the back section of Hawk Mountain, I can say I was more rattled about my diagnosis that what I was about to do. After all, I had been compensating with walking changes for 5 years at that point. It's amazing how the body adapts when we go "wonky."


That said, I know my limits and my worries, but at the end of the day, I hike when I can because that's what life is about... enjoying yourself without hurting people (there is a difference). It's just now, if I choose to go somewhere more "intense," I'll find someone to hike with. It's important to be prepared... just in case (and yes, there are some intense places that are "no more" hikes (Ricketts Glen in winter HERE and HERE, for instance - the risk is no longer worth the reward, especially since I have great photos from better days).

But yes, we need to know our limits. That's important, but so is living... as long as our risks don't get others in deep doo doo.


With Parkinson's, gait is a big concern for us youngens with it (I was 40 at diagnosis), as it is for older people with it. As for me, my balance isn't walk on tightropes great, but I haven't fallen yet (knock on wood). Almost 3 years since that date, I'm in stage 2 of 5, which if you don't know Parkinson's, it means I have tremors in both hands. I still hike, but I have dystonia in my left foot, so I hike with poles and solid Keen boots that have lasted for years. I'm at the point where I wear my boots to work as well.


In what is the greatest head-scratcher I can give you, it hurts more to type this blog without shoes on than it does to hike to the top of McAfee Knob (8 miles round trip) because of my clawed-up toes.

This is for realsies, kids.


Someday, I will have to stop hiking because PD will get worse. I don't look forward to that day, but I'm aware it will happen. Most people who go through life find that they have to give up things that they love for some reason or another.

However, we don't want to be told we need to give it up, and we shouldn't put ourselves on a timeline of when that day will be.


For that reason, I went back for one extra hike at Glen Onoko a little while after that last hike after going to the Lehigh Section of the Appalachian Trail with a friend and his wife.. Once again, I only did to the bottom of the 2nd falls, but I did the rocks and the root grabs. I challenged myself and enjoyed it, because I can.

It was a good time, and a fitting last autumnal visit to see an old friend.


Unfortunately, I can't go back anymore, even if I want to. I still physically can, but the trail is now closed due to too many people who can't read danger signs so they stand close to wet edges of cliffs and because they wear flip flops on a trail that requires solid footwear and a conscious decision to not do dumb stuff. 

Too many people got hurt, and now Glen Onoko rests in the peaceful woods.


Let it be known, this sucks, but I don't blame the PA Game Commission. Sometimes, leadership needs to step in. We're not going to agree with all decisions, and I would be lying if I said that I like this one.

However, t would be very expensive to make this beautiful area safe, so I don't fault them for not wanting to be liable or ponying up money to do this. There needs to be buy-in from someone else on this.

After all, Glen Onoko was a free to access trail run by an organization that is funded by hunters, not hikers. To go to a similar waterfall area, made safe from lawsuits (a big worry), PA's Bushkill Falls (pictured below), you would pay $16.50 per person. The only way to make this popular trail safe is money. The only way to keep it accessible is to fund trail maintainers. Without entry fees, this is impossible.

The older I get, the more I realize that if we want areas to play, we need to be a part of that, either through help or money (or both). Tax dollars only go so far to help any cause.


Also, I don't blame rescuers for getting upset about risking their own safety to extract people from unsafe spots when they do dumb stuff like standing too close to watery edges of a steep waterfall. Rescues take skill, access, effort, and money. Yes, accidents happen, and I personally am thankful for when I was with someone who needed rescued and was expertly assisted. Fortunately, that trek out of a canyon was more about walking out with an ACL injury over a rocky path with a few drops and slow down climbs (as well as incredible intestinal fortitude - like pro wrestlers have - mad props, Heather!). The extraction I saw at Ricketts' Glen featured a stretcher on narrow paths. I didn't know the person, but that was some scary stuff.

Those were some awesome people carrying that person out to medical attention. I'm sure the person in the stretcher would agree.


So if I don't blame them, who is to blame? Is this just a combination of what happens when you assemble too many people that are all about the crappy graffiti, remnants of parties, and the flip flop mountain strollers who come into a backwoods area that touches too closely to civilization? Is this selfie culture gone Darwinian like at Yosemite? Who's to say? Sadly, what's done is done.

And those of us who want nice stuff can't have it.


That said, I think it's fair to say most of us who have gone into situations unprepared can relate to the feeling that we're thankful to be 98.6° despite our less than stellar decisions. I know I am, so I'm not here to say all accidents are careless or even that all careless accidents should be accompanied by a lifetime of derision. Live and learn. That's what life is about. Permanent hate and shame are worse than any careless accident..

That said, it's horrible thinking that as of today, it's going to cost me a $100-$200 fine to give up one of the best waterfalls I've ever been to because people didn't get it. In spite of all the warnings, and we knew it was coming to this sooner or later, people didn't take the time to tread with caution.

Too many people poked the bull, and now we all lose. Let's learn the lesson before the next beautiful spot goes. Let's redirect those who need it or help them learn, like we learned to respect nature from those who "gave" it to us.


And let's say a happy thought or 2 for Glen Onoko. It was a great place as my photos show.

More photos are HERE, winter is HERE, and photos when I took my niece are HERE. Photos of the nearby town of Jim Thorpe (one of the coolest towns going) are HERE.


















Tuesday, January 29, 2019

State of the Blog


It's been a long time since I wrote anything here. I thought I would for Christmas, and then time got away from me. I didn't even have time to post last year's Christmas thoughts. I also thought I would be able to write for the end of the year or New Year's Day, but I didn't. Then the new year started to progress and with that, my wife's and my trip to Italy (Rome, Venice, Florence, Pisa, Pompeii) was coming up (we needed to get ready for that), so by the time we got back from that, I was on an intense working 2 jobs schedule with lack of sleep and sinus crud for a week before rest, recovery, and have to as well as downtime.

Somehow, I made it through, and well... here I am.

As a Parkie, I can say that I definitely need some downtime when the world is just too much. Being alone or being mindless with the TV are good things, even if they aren't productive. I'm sure a lot of you in the early stages, like me (I'm somewhere in 2), are experiencing that now. I'm sure others of you have experienced this. Sometimes we get too tired to sleep, let alone read or function as anything more than "I must get up and refill my drink and get a snack." However, it's at these moments that we have to move and fight back against PD.


Yes, it's at these times we have to stay mobile and active. It's been said by many; exercise to decrease rigidity and disease progression is essential. For this, I'm glad that our local rails to trails (above) is finally finished. Yes, it seemed to be raining a lot last year, but sometimes we just need to push through it (as long as we can take care of ourselves while doing it). Our bodies will appreciate it. I know mine appreciated being walked so much in Italy (my dystonia even cooperated!).


One of the things that I'm contemplating writing is how much the fluctuating dopamine in my brain produces a wave of different emotions and responses. Depression, Anxiety, Anger, and Irritability. Yep. They're the 4 Horsemen of the Apocalypse of My Brain.

But I don't want to think about that now. I have a chance to write something to start a new year out here, continue to sort out my pictures from Italy (color and black and white - note since it's Italian art, not everyone - i.e. David and Venus, as well as many other artists' subjects - is fully clothed, so view as appropriate!), as well as write for Parkinson's Disease Dot Net, so I think I'm going to go to my mellow place since my wife is home (early, like me) safe and sound. As the snow piles up and the cold comes in, I expect it to be a horrible icy morning tomorrow. I'm hoping the last of my snow days can fight it because the roads were nasty this afternoon.

Home and protected from that is a good thing.


There's something about home that really feels good. It's the feeling of being safe, loved, and belonging where I am. There's something comfortable about the couch, too. Sure, home isn't like being exhilarated in the great outdoors or in some spectacular man-made confines, but it definitely works at the end of a long journey.

All in all, my time in Italy was a great trip, though the comparison of poverty to wealth showcases / priceless art galleries is very sad. When homeless people are passed out and practically living on the steps of ornate churches that are covered in pristine sculptures, paintings, and mosaics, something feels "off." I'm not sure what the answer is, but it was something I noticed. We much preferred Venice and Florence for the art and architecture. Pompeii was also incredible, but I'll elaborate on them later.


We returned home to the cold and respiratory crud, which isn't fun, but as I said, there's something about being home. I like how John Dos Passos expressed it in the U.S.A. Trilogy (written after World War 1):

U.S.A. is the slice of a continent. U.S.A. is a group of holding companies, some aggregations of trade unions, a set of laws bound in calf, a radio network, a chain of moving picture theatres, a column of stock quotations rubbed out and written in by a Western Union boy on a blackboard, a public library full of old newspapers and dog-eared history books with protests scrawled on the margins in pencil. U.S.A. is the world's greatest river valley fringed with mountains and hills, U.S.A. is a set of bigmouthed officials with too many bank accounts. U.S.A. is a lot of men buried in their uniforms in Arlington Cemetery. U.S.A. is the letters at the end of an address when you are away from home. But mostly U.S.A. is the speech of the people.”

Yeah, there's something about finding your car at the end of the journey and reflecting on all that is and all that we are because of it. "U.S.A. is a part of my identity, even if I'm seeing the world."


For me, the best part of the journey was being speechless and in tears from the beauty that is the Sistine Chapel (Virtual link here). I had seen God and Adam's hands touch before, but I never saw the totality of an act of discipline, talent, and faith quite like that. For the first 10 of the 15 minutes of our tour, I couldn't figure out where to start, it was just so immense. I'd love to just have an afternoon to sit there and feel the power of Michelangelo's art, but alas... tour schedules limit this. We spent over 2 hours in the Vatican Museum and still didn't see everything.

And yes, I did get to take my Nana to the Vatican. I think she would have liked it.


The lowest part of the trip was "crashing" emotionally at the Colosseum. It's a longer post, but essentially between running late + missing our tour (we rescheduled for a different day), not eating / drinking / sleeping regularly, and being harassed by street vendors, I had enough, and I found myself sitting on a bench with my wife, crying, as I told her she didn't understand how bad the Parkinson's emotional hell ride can be.

I don't understand why the Parkinson's emotional hell ride is as bad as it is. How can someone who doesn't have it understand? At least there's empathy and support to compensate.


All the same, for the state of my blog, I'd rather just focus on things that make me happy, like free breakfast day at work or when Bryce Harper and Manny Machado will "settle" for their contracts.


After the trip, I decided to take an art history class (free through work). It's the first class I took since 2010, and it's my first online class. There's a lot of neat stuff to learn in it, and I want to be able to talk knowledgeably about art when we go to museums (next stop Athens, Greece, in late March). I also don't want my wife to worry that I'll either make her take pictures of me in front of paintings or try to touch a statue or painting. Hence, this seemed like the right class. Besides, learning is a good thing, and I believe we should all engage in lifelong learning as much as possible. Most of us have learned a thing or 2 about our conditions over time. Why not learn something fun, too?!!

As I sit in the online class responding to discussion posts, I find myself missing teaching. Now, I don't miss the grading or any of that stuff that goes with management, but I miss the "being involved in active transmission of learning." Contemplating that, I realized for the first time since I made the decision to not teach that I missed something about teaching. It felt like a void in identity, as if a part of me was "changed." Maybe I can find a way to philosophize at the Pantheon or something, but for now, it just feels like a part of me is missing.

Damn you, Parkinson's!


So yeah, here I sit, contemplating how to take my blog back from the "bots" that invade from foreign medicine or NSFW websites. Yes, as a blogmaster, I see where my traffic comes from (while not posting regularly, much of it was coming from Russia). Hundreds of hits would come out to link to my Parkinson's discussion. I can see what there names are. Mostly, they're just "hands off" type names, but the first one I clicked wasn't. Bad move. I'm not bothering to look at these again!

In the end, I have no idea why these people link to me. There's only 1 post on PD and effects down there, and it's hardly tantalizing to reflect on how PD affects urinary and sexual functions.

I also have no idea why I get inundated with spam from med sellers. Has anyone ever clicked on 1 of those buy medicine sites that they see in a comment list or e-mail? Man...

But yes, here I am in 2019, thinking about how we're almost 1/12 of the way to 2020, thinking about all of the things that I want this year to be, and thinking about how I still appreciate everyone who reads, read, reacts to what I have to say. There's still more to talk about.

It's just a question of time to do it all.

Tuesday, September 4, 2018

McAfee Knob: Going 1,400+ Feet Up Yours, Parkinson's Disease


McAfee Knob has been on my bucket list of hikes for years. I've tried to figure out how to get to it for ages, but a few weeks ago, I felt that it was in need of being done, so my wife Heather and I got her done (cue Larry) by getting a Roanoke trip planned for the weekend!

We've been known to travel cheap (though we once did go to Sandals Jamaica), but our stays in Virginia on the A.T. / Shenandoahs are legendary in worrisome places. Frankly, I'd feel safer draped in donut glaze in Bear Country, but alas...

For instance, in 2008, we thought we had blood on a chair from some ritual killing! I'm not sure if it was, but yeah... That said, at least we were rewarded with rising clouds from the valley when rain cleared after breakfast ended.

This time...


Letting the "fix" job on the AC (above) speak for the room, we'll give a borderline room condition of 1.5 stars, barring any other misadventures.

Plusses - the AC worked, the shower worked + had enough hot water, the beds were relatively soft, windows intact + not cracked, fresh Oompaloompa-sized towels daily, and there was a TV (though we didn't watch it).

Minuses - no working pool despite being advertised, urine-smelling elevator that made scary noises, cops arrested someone on Labor Day, phones didn't work, lousy breakfast, inspection failure notice on the hotel office door, and lots of outdoor hall passage puddles / funk.

This leaves said hotel with a .43 star rating (calculated much like baseball's Wins Above Replacement stat - unless you have a degree in economics, you can't figure it out, nor can you figure out the inconsistency between raters).


But this wasn't about a hotel. It's about kicking back against life's challenges and feeling awesome (and sweaty) when it's all over.

The good folks at Hiking Upward list this mountain trail at 1,740 feet of elevation gain. The map shows 1,400+ feet, but there was a little up and down to play with. We also took the fire road up and down, so we're closer to 8 miles than 9. In the end, we hiked a section of road that was "manicured," but the main vertical part was where it reconnected to the Appalachian Trail for the final 1.3 mile walk through. There's no skimping on that; 1,400 feet is 1,400 feet.


Appalachian Trail complete-ists will talk of having to step on every single white marked speck of trail to get credit for the trail. We are not AT purists, so we took the fire road.

I get the purity of the thru-hike sport. That said, what I like about hiking is that I either CAN reach the top or I CAN'T. I'm not creating a short cut, i.e. leaving a blemish to do it. I'm not getting fireman carried up to the top. I've laced up my Keens, steadied by Black Diamond trekking poles, filled my Camelbak backpack with lots of water, and I'm walking it.


Hike your own hike. Go your own pace. Have fun. Be safe.

This is a place where help only matters so much. There is no "grade inflation." There's no subjective. There's just me and a mountain. Either I make it or I don't.


While I'm there, I need to:

Watch out for snakes and bears.

Carry enough water.

Be prepared for the heat.

Don't think; know.

Hypherhidrosis ya' all. That extreme sweat condition that plagues people with Parkinson's.

Dystonia ya' all. That twisted foot pain that plagues people with Parkinson's.

Zombie ligament ya' all. The ACL repair job my wife got after her hike in Icebox Canyon (see link) that saw her push out 2 miles of desert rocky canyon in pain, without tears, but with help (see link).

Toughest hike I ever witnessed.


And there we were, getting ready to hike McAfee on Sunday morning.

The alarm went off at 5:45 (way too early in the morning). We were going to go Saturday, but the weather wasn't set to cooperate so we took in the zoo and the star over Roanoke. They're both at Mill Mountain Park. I recommend them to you. By the time we got moving, it was hot (approaching 90°), which is a no no for hiking. We called the hike, but surveyed the trail. Tomorrow was another day.

While sitting in Moe's doing the Americanized Mexican thing, we realized we made the right call.


The next day, we hit the trail at 7AM expecting cooler temps and a less packed parking lot. We got the former, but not the latter. That said, shade on the uphills and a 70°, though humid beginning beats 90°. Off we went.


Some people hike with their kids in this kind of weather in the afternoon. Some people take very little water with their kids on this hike. Some people eat Tide pods, too. Remember what our good friend Ed Viesturs said: "Getting to the top is optional. Getting down is mandatory."

You can never take too much water or potential gear for heat and distance.

Really. Don't be a statistic. Enough said.


Between us, we had 11 bottles of water, food, gear, and everything except a way to find my wife at the top, who was off and running as I took photos, poking around on the trail.

Eventually I did find her (well other people found her). She was just at a different overlook (there are 2 with a path connecting them). I just didn't see the overlook sign at the top. I did see the other signs, but yeah... missed that one and ended up on a different overlook. When it was pointed out on the way back, I did clearly see it. I'm blaming it on a mix of exhaustion and no glasses (yeah...).




The first peekaboo vista looks like this:


Please note: when the commonwealth of Virginia is hooking you up with a sea of cloud cover lifting off the valley floor, you say a thank you prayer to the hiking gods.

That said, you don't take it in too much at the peekaboo because there's a distance to go to get to the real, and that's all vert and rock, friends.




But you're not here for the story of how to get to that, so let me give you the goods.

















Our journey took just over 5.5 hours with a serious stop at the top (half hour).

The point here is that we did. We didn't set records, but we did. We had fun. We stayed safe. I kicked back at Parkinson's and my wife did her first big hike since April 2015 when she took out her ACL in a back country fall.

Prior to that setback, Heather did the frozen waterfalls of Ricketts Glen, the frozen waterfalls of Ithaca, a 30 foot rappel of Sand Run Falls, and frozen Glen Onoko (pictured). This wasn't all she did, but these were her signature hikes.


Way back when, we used to hike a lot, but then zombie ligament and Parkinson's. Both of them change lives, but here's the point. We can sit around and whine about what we can't do (I'm stage 2, so I'm slow with foot cramps and I run hot and sweaty) or we can enjoy things the best we can (sometimes old, sometimes new). It's not about being a Tough Mudder 24/7 let alone 1 day of 365. Sometimes, it's just about being us and enjoying what we can do while we can do it. And when we witness others do it, we need to celebrate them. On that note:

I'M SO INCREDIBLY PROUD OF WHAT SHE DID OUT THERE!

Godzilla and King Kong are out there to mess with tomorrow, so live well today. You don't know when you'll have another chance.


When you do, give it your all. Celebrate your success. Celebrate other people's success. Share love. Say no to the hate.

All those people who want to tell you what you can't do...

All those who want to rain on your parade of accomplishments...

All those who just don't get that life is for living...

Show 'em what's what and then remove them from your life.

Give them 1400+ vertical feet to almost 3200 feet OR enjoying whatever hobby that makes you who you are.

Get out of bed and choose to be you instead of a condition or an insult or a negative feeling.

Winning is done when you "stand up next to a mountain and chop it down with the edge of your hand."


Don't let other people drag you down and "Harrison Bergeron" you. Let your life shine. Never be less to make someone else feel more. This goes for anyone who wants to compromise you.

You've got it in you. I know it. Find it and share it. Take back your life.



Thanks for reading!