20 Thoughts for / about Those Who Care for Parkies!

This is day 4 of my 21 straight days of posting to promote my blog (my dream of writing for more than just a hobby). During this time, I will be covering lots of other Parkinson's issues in my posts every day, so be sure to check back again at my Facebook page or this page soon (and see my greatest hits on the wall to the right)! In this time, Parkinson's topics to be covered are paralysis agitans + my great grandfather, sleeping studies + sleep apnea, dysphagia, physical therapy, my first emotional overload in Mexico, disabled not disabled, the Universal Parkinson's Disease Rating Scale, responsibility of self to give up dangerous pursuits, National Parks passes for people with permanent disabilities, Kevin Hart + the joys / woes of people taking in our art, and hiking with Parkinson's stories, as well as other things that I do to stay me (baseball, music, writing, and other hobbies, as well as a few older stories that are going to end up in my Parkinson's book).

So... without further hesitation, here are my feelings on caregivers (significant others, family, friends, coworkers, passers by, and health professionals).

1. There are no rules on how to divide grief and suffering unequally in a family because we all get this crap sandwich equally. I may have Parkinson's and all its pains, but I don't get a front row seat to watch my body deteriorate or the knowledge of knowing that I will be the sole provider financially as well as physically for someone I love at some point in the future. There's a heck of a lot of emotions that go with that. A caregiver might not have tremors, but he or she gets to watch it all and not be able to do a dang thing about it. If you don't think that's painful, you're not seeing the tears for the grief and suffering.

2. We shouldn't get uptight if someone is trying to make us better in a way that we don't get.

If we think about it, we need to believe that most people want to help us improve our lives, even if they get the words wrong or talk to us in a way void of emotion (a pass we expect to be given AND SHOULD BE given for our raspy Parkinson's voices). They may have recommendations we don't have interest in (in my case medical marijuana to mask my tremors), but if they're offering things from alternative meds to Big Phrama's latest, it shows they're paying attention... unless they're just backdooring their own need to be stoned or they're a pharmaceutical rep getting paid on commission.

3. On that note, we should listen to George Clooney's life advice on David Letterman's new Netflix show. Whether you like his politics / movies or not, he'll inspire you, and that's what any good caregiver should do. Positive quotes videos go a lot further than another cannabis video (at least for me).

4. Many of us get worked up about ABLEISM, Is this a person offering to help me get down off a slick mountain trail as snow is coming down when said person knows I have Parkinson's? Is it a person who calls me a disabled person instead of a person with a disability? Is every person who mentions my condition guilty? Yes, it is our responsibility to teach People First Language, but we also need to live People First Lives. We need to enjoy our lives and show people we're just like Joe DiMaggio, Lou Gehrig, and Emile Zola by living our life and interests out loud! This goes for whether our hobbies are marathon running (like Jimmy Choi) or painting pictures. Like Nike says, "Just do it!" Ableism is trolls hating on us with malicious vomit. If you call me, "Shakes the Hiker" (my name for myself), that's not calling me a "shaky gimp with no purpose on earth." There's clearly a difference.

5. From a young age, we need to show kids what we have is an unfortunate part of life. We need to be age appropriate when we tell them what it is. When we can, I believe we should hide our fears since we need to be strong for kids, but when we can't, we need to let them know that they can comfort us, which will make us feel better. Making them a part of treatment empowers them with compassion, empathy, and medical interest. Besides, isn't our goal to educate and advocate on curing and caring for Parkinson's conditions?

6. OK, so thoughts and prayers are just that for some people. Maybe they work. Maybe they don't, but for people who don't know what else to say, these things show that:

A) they care.
B) they want us to get better.
C) our plight is something they actively want to help.

Whether we're religious or not, why should we get uptight about how someone else wants to do things like this? If someone wants to involve us in the ceremony, whatever, that's something different, but whatever people do in the privacy of their own home is fine by me unless it involves sacrificing a live chicken or praying to a Voodoo god (or the like) to actively intervene for my behalf.

7. This sentiment also comes out as the sad look and words of "I'm sorry," which we hear when we tell someone we have PD. I get that people don't know what to say. I wouldn't know what to say either, so things like this are "well-meaning" to me unless they're mixed with how this is a karmic punishment or a sentence from God for living a life that's out of line. That stuff should have ended with the aftermath of the Salem Witch Trials.

8. If we're going to educate and advocate, all topics are on the table. That said, if people can't handle things that are too intense, be respectful. Just the tip of the iceberg may be enough for some people. Remember, too, that it took us time to come to grips with DBS and our body's reactions.

9. If we need people to be strong for us, we need to be strong for them. Really. This makes us forget our plights and empowers us to overcome momentary pains.

10. Make life easy for those we love. Give them disclaimers and explanations ahead of time. If I could get overloaded in situations, then people already know about it. It's no biggie. Sometimes, it's easier to let them know, "It's not you; it's my Parkinson's." Help them to understand this, and when it's over, apologize for PD and do your best to give them your best. Unfortunately for my wife, she won't get new jewelry every time I don't want to deal with robo phone calls, but I'm good for hugs, love, and kind words.

11. Teach people to avoid junk news and conspiracies. This way, we don't get nonsense from them, and they don't feel that the FDA is hiding something that could save me tomorrow. If they don't understand meds, explain them to your caregivers. Also, tell them to do the Internet in moderation, and when they do go, go to a reputable site like the Michael J. Fox Foundation.

12. Teach them that not all medicines work for all people. Sometimes, we need bigger doses, or we get side effects. It happens. Medicine is a process.

13. Help sessions are good for Parkie caregivers, but avoid gripe sessions. Yes, it's important to hate on Parkinson's, but don't let it turn into, "My Parkie spouse / kid / friend sucks." That's not healthy.

14. Help us live well. Enjoy your time with us. We aren't going to die tomorrow. Understand what we can't do, but push us through our apathy to get out and enjoy life. We never know when King Kong, Ghidorah, and Godzilla are going to rage on the world. Until then, carpe diem!

15. Humor is a good thing, even if it's weird. I joke with my wife about it being a hate crime if she calls me clumsy. She always retorts with, "That's not PD; that's Dan." She's right. After all, I'm the guy who tripped over backward while trying to play the snare drum and tap my foot at the same time.

16. Express death wishes in writing via a living will. Do it now. There will come a time when someone will have to help you make medical decisions. Face that truth and make it happen. Also, confront how you need to know when to give things up (the car, your interest in hunting, mountain climbing, work, and The Real Housewives of Beverly Hills).

17. Let people know what your current issues are. Even if you're not showing past tremors, they may need to know (see Parkinson's mask). By knowing your level of disability or whether you view yourself as "disabled" (some of us still don't see ourselves at that level), they will know how to treat / help us. Caring people will care. Haters will make us contagious and ugly with their troll-like words. It's best to find caring people and avoid the others.

18. Tell them how to help us prepare for the next stage or more intense future symptoms. Let them sit in with you in your doctor appointments if they're at that level of closeness. My wife gets front row or phone privileges for all of her questions. When the appointment is done, my parents get explanations as well, and then it goes out to the family. Since I educate and advocate, this goes blog viral, too.

19. "Till death do us part" and "in sickness and in health" are just words for many people until they aren't (though they should be a sacred vow). Hardly anybody thinks about wiping someone's butt until it happens. If you have someone who is there in good times and bad, be thankful and reciprocate the love. I know that I am and that I do. If you know someone who lost a significant other to this, try to be there as best as you can for that person. The same is true for people who lose fair weather friends or get exiled from the job. Some people don't get it, but if you do, be there and educate and advocate for your friend... as much as said person feels is appropriate.

20. If you're a caregiver, you're a helper and a hero to someone. Mad props for all that you do. Keep up the great work.

Thanks for reading!

This Glass is Half Full or How Not to Jump off the Handle at Well-Meaning Help

          One of the main concerns I see from many people who are disabled is to maintain a fierce sense of independence despite the obstacles that they face. I get this, both as someone who now has early onset Parkinson’s disorder and as someone who generally doesn’t want to rely on other people unless he has to. Nevertheless, I find that the older I get, the more I realize that we are responsible for families, friends, and communities. I don’t say this to be political, but rather, I say this because we should all want to be a community of like-minded individuals. We should want to make people smile when they’re down or teach them how to do things that they can’t do. We should want to barter our unique talents for their unique talents, whether buying things at Wal-Mart or getting someone to chop down the dead tree in my backyard in exchange for money that I made from teaching people to be better writers / researchers.

            On the trail, it’s easy to find greater obstacles if we’re suffering from conditions. This number of potential problems multiplies in winter. The snow and ice combine with steep cliffs and rocks on the ascents and descents along the mountain face. Add the rapidly descending darkness of dusk to the picture and WAHLAH! There’s a problem in our way. The question becomes, “How do we face this if we’re here on the trail and our legs / bodies aren’t what they used to be?”

            For me, this was real on Sunday night as I pushed up the face of Hawk Rock at Duncannon. This isn’t a big or steep mountain, but there are some rocky areas, and seeing as it’s been sort of cold, but not really cold, the ice on the rocks was the thin invisible kind. I had been watching my step on this all the way up. I chose not to wear my chains since people coming down with tennis shoes said there was only some patches of ice, but the chains wouldn’t help with it since they were too thin.

            They were right.

            Most of the journey was dirt. Sure, there was salt shaker snow sprinkled here and there, but it didn’t cover the ground in any capacity. Even up on the big push right before vista level, there was no snow of consequence, though there was a seriously iced-over rock in the woods, but even that was an outlier.

            Nevertheless, the invisible ice was slippery. My Keen boot took a slide over one rock, and I doubled up care, wedging my foot against the next step and in the crevices of rocks while choosing leafy sections of the path over straight up stone whenever possible. Through rigid knees and chesty congestion, I made it to the top just as another dad, son, and dog passed me by on their way to the view, huffing it up before dark. Fortunately, an in-shape person could do that mile-long gradual ascent / descent in no time, provided he or she was confident on the rocks.

            When I got to the top, the son was looking to get close to the edge for the best pictures he could get. Dad wasn’t in the spirit of letting him risk an icy drop for a digital image, but the son was really into the multiple views. As he skirted the line between safe and in danger, Dad and I spoke about hikes and the like. The subject of Parkinson’s came up, and well, it was getting darker and darker, so I had to ask if I could have the rock really quickly for a couple fast snaps and a picture of myself so I could get it before it got too dark.

            I wanted to clear the big rock patch before dark.

Sunny pictures from July 2015

            Dad agreed, and I made my shots lickety split so I could get out of there. As I was doing it, the father asked if I wanted him to wait for me so I would be safe getting down.

            I help up my wrist to show my shakes, and I smiled as I said, “I may have this, but I’ll be OK. Thanks for asking.”

            I wasn’t hostile, mean, or stand-offish. In fact, I appreciated the concern. I’m glad they asked. Sometimes, a little help goes a lot further than no help. If he would have thought I’d refuse him callously, he might not have asked. Why raise someone’s ire with a question that falls on aggressive ears? However, he chose to be a community and to help a fellow hiker down.

            I appreciate that since it shows he cares enough about someone he doesn’t know to want to be responsible for someone else’s welfare.

            Some people get really upset at people who want to infringe on their independence and not call them by the right name (People First Language). However, I’m trying to see things from the perspective that most people are just uninformed.

In my life, I’m trying to do a couple things differently. First and foremost, I’m trying to look on the positive side. Most people who want to talk about my issues know as little about them as I did when I started out. To most average people, if they know about Parkinson’s, it’s Michael J. Fox, tremors, and medical marijuana (an offer that really annoys me, but alas, that's a whole different post). They don’t know dopamine. They don’t know that medical marijuana is not a ticket to a cure (instead, it’s a way for them to feel that I'll get all Bob Marley without the tremors so that they can get all Bob Marley, too, despite having no medical marijuana needing conditions). They don’t know about what’s being done to find a cure for it, though they might know stem cell research, a vague concept, is involved. They may not always see my tremors. They may tell me I look good despite this. They may think I’m too young to get this. They may think I’m too active for this. They may not see my other symptoms. However, they don’t know what to look for because it’s not them.

Thus, my need is to educate people. It’s not always about taking them for bathroom visits to show how bradykinesia slows things down to constipation. Sometimes, just listing symptoms without gory details is enough. People who are willing to listen are people who are willing to understand and share knowledge. By the way, if someone ever told me I was too young too have Parkinson's, I'd agree, but I'd educate them that we're all too young, and my early stuff made me 1-15,000 or so unlucky. Boy, talk about losing the lottery!

My job is also to be positive about this. My job is to be energized as well. Number one, I need to avoid rigidity. I could feel that on the trail in my knees on Sunday, but now for having walked, I feel better since my legs are worked again. Here, being energized shows people that not all people with disabilities are inhibited by their condition, though some people are. Thus, making a choice to be energized is being a role model to myself and others. I should note that I had thought hard about driving home without stopping after the Standing Stone Trail Club meeting, but I didn’t. I needed to push my tubby butt up the mountain. Right now, I can feel my big ol’ belly getting bigger. That needs to change. I can feel the call to the vista, and really, I’m so much happier on a mountain top (cue the Hendrix “Voodoo Child”). To sum it all up, if I’m not pushing hard, then I become a stereotype. Personally, I don’t know what to be with regard to fulfill my Epictetus role as a person with a disability, but I definitely don’t want to be a stereotype.

Thus, my job is to show people what it means to be people first. Many able-bodied people aren’t. With their Bonbons and their 64 ounce boss bottles of soda, they don’t live life to the fullest. They don’t choose to live life. That stuff is anathema to me. I may have to give up some things in life, but I’m not giving up the ship. Additionally, if I can motivate me, I can motivate them. Thus, they should choose to be a person first. Then, they’ll see the importance of the words. I’m not tremors or eyes that don’t blink or an every other day visit to the bathroom. I’m Dan. I’m a husband. I’m a teacher. I’m a son, a friend, a writer, a hiker, a music aficionado, and a goofy me. I may happen to not be able to smell some of my own gas (a side benefit of Parkinson's), but I'm not sciatica, dystonia, and freezing.

Here it’s important to note that these people don’t know all of our “politically-correct lingo” or symptoms managements / discussions. They know diseases and conditions, but they don’t know how we fight to be seen and understood. As a result, we need to gently educate, not start riots or tantrums when people don’t get these rigid rules. We can’t assume they know (the vast majority who aren't recently college educated don't) since then we would be making an ass out of them and us. Besides, the maniacal levels of conform or die PC theocracy are getting out of hand. I’m willing to be 99.99% of all people who say “disabled person” instead of “person with a disability” aren’t throwing hate or trying to put me out to pasture.

They simply don’t know, and it's our job to show them how able we're willing and capable of being.

And that brings us back to people who want to help others out. It’s our nature as a species to care. We just forget about this since so many people are too selfish to think about anyone other than themselves. In the same way we want the right to be independent and able, we can politely refuse and be thankful for the touch of humanity when people offer things for us that we could and should be doing ourselves.

And that’s what I felt slowly moving down the mountain, using my Black Diamond poles to hold my balance and get down the staircases, rocks, and paths, which glowed in a ghostly manner as I descended back to my car in the rapidly darkened early evening. All in all, it was a great hike, though only about a 2 miler. Still, any day above ground, any day in the woods, and any day learning is a great day, especially one without falls and bruises.

On that note, may all your trails be awesome adventures, whoever you are.

PS – to the person who asked me if I wanted help, thanks. Had the trail been really icy, you would have had a companion.