Wednesday, March 28, 2018
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!