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.
No comments:
Post a Comment