For many people, we tend to think of Memorial Day weekend as the beginning of 100 days of summer that kicks off this weekend and moves to Labor Day weekend in September via the Fourth of July. I think British people refer to that day as "Don't Let the Door Hit You on the Way out Day." Generally, a fair bit of Americans refer to that as "Screw the Monarchy Day;" however, with tabloid and TV love for the royal wedding, we seem to have a lot more Anglophiles than we did before.
I don't think that's a bad thing. England is our genealogical birthplace (in many lives), so if that's your thing, so be it. Enjoy! I would have no problem going back to England. In fact, I'd love to see it and the castles and cathedrals. Were I living in England, I might even feel nice to the Monarchy and accept them in the way that I have accepted Oprah, who really does have a lot of good things to say (though I wish she'd body slam Jenny McCarthy to make up for having her on the show).
Yes, charity of any kind is good, so if that's what they do, then let them.
Like I said, I can't fault people for loving the UK. I loved England, but unlike T.S. Eliot, I couldn't give my love to the king and queen, so I just spent my expatriated days in England in love with a British gal and country, living out my early twenties in search of place and meaning.
Those were good days in the early and mid-1990s that made the good new days of the 2010s possible.
When I type that number, I have to remember it has a 1 and 9 in the front of the date. That's more than half of my life ago. The 19 signifies that it was a long time ago. So it goes. However, I look back and memorialize a part of my life in my own special way. I'm not going back to England again, but those days made me who I am. I'm not going back to the Air Force again, but those days made me who I am. I'm thankful for them, and while I'd do some things different, the Air Force and England aren't a part of them.
This military memory brings us back to Memorial Day. Whereas Armistice Day became Veterans' Day, a day where we former veterans go to the Appleby's and Golden Corral (instead of remembering 11 11 11), Memorial Day is a day for only the deceased soldiers, sailors, airmen, and Marines who lost their lives in service to our country (freedom, which is something more than a symbol of this country)
As for heroism in battle, there's Lone Survivor by Marcus Luttrell. For push it beyond the boundaries military service, there's Tom Wolfe's The Right Stuff.
When it comes to patriotism, any World War 2 film will do. Saving Private Ryan comes to mind, but so do all of those old John Wayne black and whites. Than again, let me give a shout out to Mel Gibson's The Patriot... great movie. No Australian (except AC/DC) can truly define America quite like him (really).
While most of those books are fictional, if you want to see some real heroes, see the list of Medal of Honor recipients list HERE.
I would assume even the Southerners who fought in the Civil War, standing against the Union, get their due today.
Personally, I find the words of Lincoln's "Gettysburg Address" sum up this day well, though they get their own day in November.
Four score and seven years ago our fathers brought forth, upon this continent, a new nation, conceived in Liberty, and dedicated to the proposition that all men are created equal.
Now we are engaged in a great civil war, testing whether that nation, or any nation so conceived, and so dedicated, can long endure. We are met here on a great battlefield of that war. We have come to dedicate a portion of it, as a final resting place for those who here gave their lives that that nation might live. It is altogether fitting and proper that we should do this.
But in a larger sense, we can not dedicate we can not consecrate we can not hallow this ground. The brave men, living and dead, who struggled here, have consecrated it far above our poor power to add or detract. The world will little note, nor long remember, what we say here, but can never forget what they did here.
It is for us, the living, rather to be dedicated here to the unfinished work which they have, thus far, so nobly carried on. It is rather for us to be here dedicated to the great task remaining before us that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion that we here highly resolve that these dead shall not have died in vain; that this nation shall have a new birth of freedom; and that this government of the people, by the people, for the people, shall not perish from the earth.
So enjoy your picnics and praise those who served and shuffled off this mortal coil, but remember that only the dead get memorialized today. Anything else is stolen honor.
Unlike the fake demons, ghosts, ghouls, and other people celebrating in Salem, Massachusetts, every Halloween, there are some really scary realities that we people with conditions like Parkinson's experience. Often, the medications we take while being treated for these conditions, can create risks that are downright frightening. These create the kind of situations that make people question the nature of their treatment and hope for being better.
That's not good.
Thus, this is a story about choosing the right meds with your doctor and understanding that not all medicines work for all people, so patience is everything.
FIRST AND FOREMOST, being medicated is trial and terror, and it's not your doctor's fault if the pill needs to be a greater dose or yanked due to side effects (getting the right dose is called titration). Bodies are different, so what works for one doesn't work for others (and vice versa). Thus, my effects listed below might not be yours.
Additionally, your pills could take a few weeks or a month to show effects other than things like feeling nauseous. This lengthy healing leads people to frustration, especially when they look at the price tags on some of them (a month of Rasagiline, AKA generic Azilect, is over $500 for 30 pills if the buyer had no insurance).
We can attribute this frustration with this process to a few factors:
NUMERO UNO - we are just plain scared of this dark place we entered into. Things that exist there are designed to hurt us (or so we believe).
Understandable.
Next, going back to the beginning of the prescription process, one of the most important concerns that people have when it comes to taking medicine is simply put, "Will it make me better?"
The next question is either, "How much does it cost?" or "How fast will it work?"
Whichever way, they're the follow up questions.
Our doctors explain this. Our pharmacists double check what was sent against additional effects of taking A with B or C, because, you know, we don't want a third arm growing out of our backs and they don't want a lawsuit on their hands. They also ask to speak to you, too.
Then there's fear of "chemicals" in our bodies, desire for natural medicines, or desire for medical solutions that are kept from us by law. We want to know about these, too.
Additionally, one of the most common thoughts of people of my age and older, who saw the advent of medical commercials barraging us on our television sets, is how people were now able to go in and say, "Take your Warfarin and give me Eloquis or Xarelto!" Amazingly, just by seeing a commercial, we are all planning to be as happy as these people on television who took the Pepsi Challenge and just said no to the wrong choice.
As with the way medications are sold on television, the beginning of the commercial talks about how wonderful you will look while swimming, performing in front of crowds, proposing, or enjoying family / friends. After that, at about the half way point, the announcer changes his or her tone to "faster than an auctioneer" and reveals all of the side effects you could get. These cover everything from rashes to death. We are warned not to operate heavy machinery, and that's a good place to not be. We don't want to be messing people up with our choices to drive farm equipment in crowded places, when we pass out.
To continue this discussion, I give you the Otezla people, who stand as my arch nemesis in the world (goll dang you and your usurping of Katrina and the Waves' "Walking on Sunshine!).
Now in reality, I have no issue with Otezla; it's simply just an easy example to show since we all watch the commercials on television, and we get what's going on in them. This company manufactures a drug to help us, and it wants us to consider taking it. Product recognition isn't necessarily a bad thing, but alas, some of the effects that some of the people taking it might experience are. It's all about how "sensitive" our bodies are to the medication.
This goes for all meds - not just that one.
Nevertheless, in cases where people taking medicines / procedures could become a danger to themselves and others, we often don't know what to do or to look for when it comes to monitoring someone's behavior. Do we hide all of the dangerous instruments of death (to include the butter knives) to protect us (and them) from themselves?
For instance, I was talking to someone I knew, and he told me the story of one of his fishing club associates who had issues after having anesthesia (BTW - this can hit Parkies and people with Alzheimer's hard, too). As I am not a doctor, I can't say what the condition is from the description I was provided, but from how the symptoms were described, the person in question seemed to be more and more agitated than he used to be. In fact, now he seemed to be ready to instigate trouble over things that most people would never get down to fighting over.
"Looking up issues on the Internet" (WARNING - not always a good thing), I saw something that would seem like a good starting place: Post-operative Cognitive and Delirium Dysfunction. Science Direct states:Delirium and cognitive dysfunction are common manifestations of acute brain dysfunction, occurring in up to 70% of post-surgical patients. Developing postoperative delirium and postoperative cognitive dysfunction have long-term consequences, such as higher morbidity and mortality and increased hospital stay, and it increases the risk of dependency and institutionalisation. Despite the relevance of these cognitive disorders, the specific aetiology is still unknown, and there are many factors that have been associated with its development. Between modifiable factors associated with the development of Postoperative Delirium is the exposure to analgesics and hypnotics. The multicomponent interventions for prevention and treatment have been shown to reduce the incidence and severity of episodes.
This presents a slew of issues. If we are possibly a danger or in danger due to our own medicines, then how do we confront the consequences of this when the time comes to choose the value of a pill over the value of freedom from side effects? This could range from driving to working to owning weapons (I grew up in a hunting home all of my life, and nothing problematic ever happened with the weapons my dad owned, so I'm not touching the gun control / ownership argument because it only matters here to the choice of the responsible owner).
NEVERTHELESS, I state that how we choose to give up independence is a question that a lot of us will confront some day. As I am an American, I look at how driving, working, and gun ownership define so much of our country's inherent attitude. That's not a bad thing or a good thing; it just is. Thus, when we come face to face with something that could create a danger to our interests / hobbies, can we accept that we can't perform them anymore? Can we afford to scale treatment back?
I can't answer that either, but I do think about it with work and driving (there are no guns in my house, so that's not an issue).
Another perfect example of this is a woman I know who doesn't drive at night since she only has one good eye. Instead, her husband takes her places. Working through these issues helps makes sense of that type of thing. I never hear her complain about it. In fact, it makes her and her husband closer since there seems to be a valuable sense of protection and love in that act. Surely, there will be women who say they don't need a man, and while that shows a streak of independence, the reality with PD is that we will eventually need people to button our buttons, clip our fingernails, or help us around (to include wiping our butts!). For this, we need to understand that the new normal might be different, but it can be just as fulfilling / personal in different ways (though I'm not sure butt wiping counts as fulfilling).
I face the contemplation of this now in my life as my students who owe me work come in to hand it off. It's important to say that I am facing the future of liking a lot of things about teaching, but also in facing a future where I wonder when the serious freezing and pausing is going to come and make lecturing / grading impossible.
It's a difficult prospect to figure out, but yeah... that's where I am since all of my optimism is a reaction to the scary future (loss of independence, family tears, loss of mental functioning, inability to dress myself, freezing, deep brain stimulation, financial woes, etc.).
This leads us to a place in the past (that is no more) where the medicine I was taking affected me with all of its side effects at once. The name of this medicine was Benztropine. It is one of many different medications with a chance for extreme effects (others are HERE - to include Prozac (Fluoxetine)). Many times, they don't happen. Sometimes they do.
Going down the chart, I list you a few of these. You can see the rest at the link above.
being forgetful (this is the worst for me since it reminds me of my Gram's Alzheimer's and my loss of identity)
In this 1, I literally found myself fishing for words. I would come back with the wrong words, and I knew I was wrong, but it was the word that came out of my mouth all the same. Being in a place like this, where I am trying to find the answers is a bad place to be. I had the same issue last fall with Artane. Amantadine was just a freaky rash that came up after a couple months, but being off meds for PD left me BLAAAAAAAAAHHHHH!! last autumn. This time, in just a short week (tops), I was forgetting things I saw 2 seconds beforehand. I literally felt "far less than intelligent" knowing that my answers were dysfunctional beyond just word fishing.
It was like the bridge out sign was up, and I needed to find a different way around to where I was going. The only problem is that the alternative routes meant driving all over the place to find the way back to the place I was going. My "map of the world" had become faulty.
constipation
dizziness
dry mouth
This is really bad - I thought it might be due to the sleep apnea machine I've been using or my seasonal allergies, but yeah... my mouth was definitely in need of some serious flavored stuff to take the nasty away
Also, I should note that I take off my sleeping machine mask in the middle of my sleep! (usually at about the 1-2.5 hour point)
headache
irritability
lack of appetite
muscle cramps
This is really bad - My right foot seems to be getting ready to go dystonia style like my left foot, it would seem with really rough, movement stopping pains that I need to stretch out to make them vanish.
seeing things that are not there
I had also been seeing "ghosts" in the form of movement out of the corner of my eyes. I know they're hallucinations, but it still makes me jump when it happens and I can rationalize it back to unreal.
I also had felt "trapped in my room," which happened one night when I couldn't find the doorknob or the light switch to exit the bedroom to do a midnight bathroom visit. Unlike MISTAKEN SYMPTOMS (an old post I wrote), this wasn't a "we'll laugh about it later" kind of thing. Instead, it was Marley's Ghost taking me to see the future of my PD life.
thirst
tiredness
trouble concentrating
trouble with sleeping
blurred vision
lightheadedness
I also have twitching eyes, which didn't appear to be on the Mayo Clinic's list
For me, the only answer was to quit it cold turkey, which I did. I never looked back.
+++
In hindsight, this worked. I didn't replace the medicine since my doctor felt we could put that off for some time (until we go with "big guns" medication, but now, a few weeks later, I'm still in fear of what could be with some of these PD things that are coming. However, in the weeks it's been since I started this story and posted it... I feel a lot better about my chances at the poker table of Parkinson's.
Nevertheless, for all of the crap that's out there with our shared condition, I choose to be optimistic because pessimism is a lousy choice. Sure, we all need to cry sometimes, but when we're feeling capable, we need to work (however slowly) to acceptance of what is.
Thus, my goal is to go swimming with Lieutenant Dan as much as possible, because, like you, I'm fighting a tough fight (no matter what stage we are at). You might call the condition of dealing with it "purring like a cat on a throw pillow." That's fine, and I do like to feel that way, but the ultimate choice is listening to Forrest and accepting the hand that's sitting in front of me.
So, Gary Sinise, I'm ready to jump off the boat, too, and make my peace.
While I was in California on vacation, I received a Facebook message from a person asking for positive thoughts on coping with his Parkinson's disease diagnosis. If I had access to my trusty computer keyboard, I could have whipped up a response in no time (I've been on this for about 2 hours, but that's not much time for a writer), but I was on the road, and yeah... typing on a cellphone isn't ideal, so I went with the simple version.
In today's world, we take for granted that we have Internet access pretty much everywhere, and when we get to those connected spots, there are computers to hook up. However, this is not true, as there are still places that lack for connection in the lower 48. Most of these places are either in the desert or the mountains, but there are also sections in places like the middle California coastline (where we were), which not only don't have cellphone connection, but they also have mega expensive gas!
And yes, before I go too far, there are towns, but they are far apart because it's beautiful on the coast, and we don't need a million towns interrupting nature when we can have lots of elephant seals instead. If you're not sure what that means, see the video below.
That said, we do need clumps of civilization in between the somewhere and nowhere we encounter across this great country. In these towns that do exist, since things have to happen, we need food and supplies, and in the bigger places, there have to be hotels, motels, bed + breakfasts, souvenir shops, and amazingly enough (since they still exist), libraries.
Prior to the message, I went looking for one of these "antiquated" libraries since I only had my cellphone and Kindle with at the time, and I needed to finish my grades (the program we use for online learning isn't compatible with my phone, and it's not always WIFI ready for Kindles in other road stretches or tiny towns). Cambria (around San Simeon) was a no go, so we went to Palo Robles (inland a little bit) instead, and I graded there (much thanks for that!).
Heading for Yosemite via Angel's Camp, I wasn't thinking I would have much luck to answer this person's message, so I was unable to type a deeply meaningful and lucid response that the magnitude of the question demanded, but I did type some things, which I hope went over well.
Nevertheless, now that I do have time, I want to compile a list of things that I would want someone to tell me upon being diagnosed. Granted, I'm a stoic, and that means I need writers I don't live with telling me to tough it up and live life the best I can with the cards I'm dealt with. This also means that I'm a feeling human, so I need people who I do live with to tell me that everything is going to be all right (and I in return need to say this to them). If this sounds like a contradiction, it probably is, but it's me all the same.
Not knowing the person who wrote me, I was humbled that someone would ask my opinion. I often think of my life in terms of the things that I struggle to do right, but I'd also like to think that I have my current attitude to Parkinson's, my marriage to my wife, and my writing as things that I do fairly well. Thus, I was empowered by his request. Additionally, his request also made me want to write this better now that I'm home.
So here it is.
1) Parkinson's isn't the end of the world. Yes, it's a progressively acting neurodegenerative disease (that's a mouthful), but it's not King Kong and Godzilla rampaging through the city today (instead, it kind of starts as a fly buzzing around your head and landing on your face every day). What does that mean? It means you have plenty of living to do; however, you have to live this life with tremors and some other conditions that most people don't know about for a while. It's not easy to put them to the side, but you can do it. I believe in you. You seem like a good person, so you have that going for you, too!
2) Yes, someday, you'll have other issues that people will notice (and you will, too), but I can't tell you when or if you'll get to all of them. Besides, if King Kong and Godzilla rampage through the city tomorrow, it's not going to matter anyway. Life is like that. Sometimes other things take precedence, and then we need to fact up to those. Besides, we can't predict the future, so get living today (as much as you can, spending time with the people who love you and that you love). There's a lot of fun things to do in all sizes, shapes, and forms.
3) Start thinking about the bucket list. Make these things happen. Yes, you are running against a clock for how long you might be able to do some things, but you're not Dostoevsky facing the intensity of coming back from the edge of life with the heavy responsibility of living each moment perfectly. Besides, there are other options for taking on pain and suffering and pessimism. With that, even if you don't like country music, you should have / could have been listening to Tim McGraw's thoughts about life as he watched Tug's final chapters. Personally, I think he's right on. Bring on Fu Man Chu.
4) You're a great person, and you're still you. The only difference is now someone has a name for your tremors or the symptoms you presented. Stop thinking about Parkinson's 24/7 (I know that sounds easy for me to say, but I'd like to believe you can leave that at home). Family, friends, job, hobbies, and commitments outweigh Parkinson's... no matter what conditions it plants between your brain and your toes. Yes, they'll all have questions, and you'll have to answer them, but you still have a lot of memories to make and gatherings to attend. Make the most of it!
5) Stay in motion. Parkinson's is all about rigidity and exhaustion. Some people rock steady box. Others go dancing. I go hiking. Whatever you do, just do it! No hobby is wrong if it keeps you active.
6) GARY PAULSEN (Hatchet author) - “He did not know how long it took, but later he looked back on this time of crying in the corner of the dark cave and thought of it as when he learned the most important rule of survival, which was that feeling sorry for yourself didn't work. It wasn't just that it was wrong to do, or that it was considered incorrect. It was more than that--it didn't work.”
By the way, your middle school kids have probably read this book to wire themselves tougher. Stoics can read this quote as, "Man up. Do what you need to do. Your survival depends on you." Feeling people can read this quote as, "Sometimes, you're going to feel like crying or getting emotional. That's OK. Get it out, but when it's done, take a deep breath and do what you need to do. Your survival depends on you." 7) Support teams are essential. Find the people who love you and tell them what you need. Listen to their advice, give + receive praise, and work together for your betterment. Sometimes they'll get it wrong, but people genuinely mean well. BTW - Don't badmouth them and encourage them not to badmouth you when they hate on your Parkinson's in private. There is a difference, and besides, once you start belittling the person, things never stay the same (even if the person didn't hear it).
8) Everything you have learned is what you go into this rewiring with. If you're reading this early on, you have time to change before the next avalanche hits (avalanches can be anything - they are my expression for that moment when the bad stuff hits (loss of job, relationship, sickness, accident, diagnosis, etc.). Avalanche Day is your diagnosis day). The term "avalanche" comes from the Cory Richards (below) story. If you aren't wired tough to withstand the moment, then you need to find those who are and learn from them. Whether you're a stoic or a happy go lucky person, it's all about finding calm in the storm. I recommend whatever works for you. I say that as a client of myself, not a professional trainer. This woman writes about radical acceptance.
However, if you want to know what changed my attitude, Laurence Gonzales' Deep Survival and Surviving Survival saved my life the last time I went through a bad time in my life (2011's post school job hunt days). They outline the methods that work for me.
9) NOTE - if I was diagnosed in 2011 when my symptoms started or early 2015 when I was misdiagnosed, I wouldn't have had the benefit of 19 extra months of looking at the lives of heroes and role models to get myself in order. Frankly, I would have been a mess. Get yourself a hero and a code of life / philosophy / theology now. They will help carry you when you and your caregivers can't.
BTW, my numero uno hero in the world is Jackie Robinson.
Check out other cool uplifting things by some of my heroes like...
If you want a female or a funny or a great established blog, check out PERKY PARKIE
10) Here are some of the quotes that inspire me. Find ones that inspire you. It doesn't matter by who. Post them around the house.
11) Since you're a Parkie, you get Muhammad Ali (above), Neil Diamond (below), and Michael J. Fox and his foundation on your team!
12) When you're first learning, try to only view solid websites with real credentials like Michael J. Fox Foundation and Parkinsonsdisease.net when it comes to information. I could list a lot of good medical ones (NIH, Mayo Clinic, and other reputable Parkinson's orgs), but if you start looking for miracle cures R us, you're going to find them and get led astray (as well as snake oil salesmen and conspiracy nonsense on otherwise good blogs). If you go looking in chat rooms, you're going to find a million diagnoses from possible to impossible to rare to wrong. Some people know their stuff. Some want to help. If it's bugging you, see a specialist. The best thing chat rooms do is provide support that you aren't alone and allow you to make friends, while learning about the issues. For this, I recommend many of them. However, don't substitute them for doctor's advice and experience.
On that note, don't go looking for further down the line symptoms until you need to. Move into this step by step and adjust to the water's temperatures. There will be time to think about deep brain stimulation videos later.
13) Educate others, advocate for Parkinson's cures, respond kindly - don't go looking for a fight (for not using People First Language, offering help or just not knowing), document your experience, don't sit thinking the miracle cure will be here by Christmas, and live your life to the fullest! Whatever will be will be, but remember, we can be the generation to motivate a cure for the future - even if it will never be for us. For me, that is my purpose numero uno in this game of PD.
I thank you for reading this, and I hope it helps you and helps others.
Recently, I started blogging HERE at Parkinsonsdisease Dot Net. You can read my diagnosis story at that link. I encourage you to check out other bloggers there, too.
I blog regularly on my own and havea Parkinson's site on Facebook. I encourage you to like it if you would like to read more about my Parkinson's experience as well as read about me being the me that still does what the old Dan used to do before he had PD (and some new things he's learned to like since then).
Here are 2 other videos I took on vacation about my thoughts on standing up to Parkinson's.
As I've spoken about in many of my posts, since the last week of November, things have been accumulating on my "Pile It on List" of stress. It sometimes feels like we are breaking even as my wife and I will take a couple steps ahead, only to go back 1-3 steps with our health / life. Fortunately, we're great together, but sometimes life's stress takes it out of us. For me, I'm combatting that by operating on a written list of job tasks. It's really helping, and I win every time I color a line black or yellow. This keeps me from being too stressed, though I'm not as orderly as I should be. That said, I'm working on it and keeping myself in that mode of us "Must do / will do." I recommend this for other Parkies and caregivers. Heck, I recommend this to everyone.
The point of life is to live it, but also to rewire ourselves for the what ifs. If we are taking care of someone else and not taking care of ourselves, both of us aren't in a good place since our energy tanks are low. As I said, the key is eliminate the faulty wiring and get ourselves ready for what's to come. We can do this many ways, but we need to prepare ourselves for the what ifs (relationships, job, family, cars breaking down, houses succumbing to the weather, sickness, disagreement, and other things that could happen day to day). These are the things everyone goes through, but this person doesn't always know how to deal with them or feel like he or she can get out from underneath. Here, if we're so inclined, we can think of Camus' take on Sisyphus, who was condemned to role a boulder up the hill only to have it go back every time. The central question was whether or not it was right to give in. Camus went with the idea of the absurdist hero, who stays true to his plight in the hope that someday he will be free.
As Albert Camus said, "I leave Sisyphus at the foot of the mountain! One always finds one's burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man's heart. One must imagine Sisyphus happy." Let's look at this with a simple definition. Stress is what it sounds like: A pile of bricks pushing down on our chests like we're Giles Corey. Generally, we aren't like this historical figure screaming out for "more weight" as the Salem Witch Trials took his life, but some of us do dig our own pitfalls and compound our problems (I'm very experienced at this - but I'm learning to be better). Here, the best advice I can give is to learn from mistakes and not make them again. That said, we need not stay out of fray where things can go all or nothing, when they're much more likely to end poorly. Nevertheless, by giving it our all with the greatest help, simply by trying, at least we made an attempt. Whether it wins big or crashes to earth, at least we can celebrate ourselves for giving our all. Let's just go into it with enough advice and assistance. In doing this, by thinking about our time in the game, we can reflect on how we've at least tried when we think of all the people who won't, can't, and don't want to risk failure (I'm working on accepting life success in this way, too). What good is contemplating a game we're never going to play? How can you give your best effort until you stepped in the ring?
Another point to this concept of keeping ourselves out of trouble is that we don't have to make every decision on the spot. Sometimes, we need to think about it first (I'm also an expert at not doing this enough) and phone a friend. By cutting out the need to do, we can meditate, pray, seek advice, and / or search for evidence. That's a good thing. Some people may not be aware that there are tests to monitor the stress in people's lives. Perhaps, this is because they have never heard of stress reviews by name, but my belief is that we've all done something like the Holmes and Rahe Stress Scale in order to find out what's ailing us. Sometimes, this rewiring we're going it about knowing the rules of the game. Find a mentor, remove what doesn't need to be, find a support system, and project goodness out to the world. It may only give you a couple points back, but as you go, the things it teaches will become natural and instinctive. Which brings us back to MWAH!
Nevertheless, I've been trying to work my way through all of these stress building experiences in a way that doesn't leave me feeling existential. As I said, I'm motivated to do things when they are written out on a list. Here, I feel like I'm working hard when I cross things off on my color coded to do list (pictured above). However, other times... not so much. Long live the Parkinson's exhaustion tendency that gets in the way... NOT! In my mind, I know what I have to do (stay loose / stay positive), so I reflect on the simple things that make me happy OR things that I am thankful for. We'll start with advice (#1) from my cousin David....
1) Never give up on yourself, no matter what happens.
2) Some things are priceless.
3) Whether it's writing, acting, or life, push it to the maximum.
4) Never stop talking when you have a connection. You may not be an X, but perhaps, you were meant to be a Y.
5) Encourage others to the maximum
Moving on from that to the Parkinson's things that affect me.
#2) My left side, which had been wracked from the car accident 2 weeks ago, is slowly getting better. As I've said before, I was able to get up and out of the car and move around, but it's really painful to lean against it now that the adrenaline and fear from that moment have vanished, so I need to keep pushing myself for walks of longer differences. Yosemite in about a week... I can't weight to see the waterfalls, bears, and rams!
3) I'm currently in the midst of my sleep apnea machine use, which is a tough process figuring out what works and doesn't. Whether a face mask or how to lay around to not feel hurt, I am conforming to the nature of going from have to do to want to do.
For the most part, I can sleep well with it, when I can sleep (the past few nights are around 3-5 hours with a nap usually thrown in. Given about a month, I will be able to figure out how well that I'm doing with this new medical process. At that point, I will be going to MYpulmonary specialist for a check over. On that note, it seems weird to have a personal neurologist and a pulmonary specialist that I can all my own. At my regular doctor's office, I just get who is available at the time. However, with a regular doctor, he or she knows me, and it feels more personal.
4)That being said, the medicine cocktail I was on up until earlier today (my doc has me taking Benztropine / Cogentin to go with the Azilect / Rasagaline and Ropinerole / Requip), has caused me to monitor a lot of what went on with it. For those reasons, I am now abandoning it on the basis that there are too many problems with it, so I will be on Sinemet. That wasn't ideal, but seeing a spotty memory in my head... yeah. That's too much.
From a professional standpoint, my doctor had wanted to hold that off as long as possible, but with this one not working, too (that's the 3rd medicine I was affected by), everything seems to point toward bumping up my need for Sinemet.
5) As I said earlier, both my wife and I are monitoring the side effects of my medicine, as well as how they operate together. Looking up the side effects of what I'm taking is a learning process and a scary experience. While I can, I'm going to continue to learn everything and do things to enjoy life. Nevertheless, there is a lot of medical-ese in some of the academic things we need to accomplish, so every day is an adventure.
This list of side effects is from e-Medicine Health. There are only the ones on the list that apply to me. You can see more information about what might apply to you HERE.
On the list from them, I list the ones I am seeing and experiencing.
confusion and hallucinations
constipation
dry mouth that interferes with speech, swallowing, appetite, or eating;
blurred vision
twitching or uncontrollable movements of your eye lids
drowsiness, feeling nervous or excited;
nausea, upset stomach
6) The same can be said about my sleep apnea machine's side effects / problems with it. While not everyone feels inclined to wear a CPAP mask at bedtime; however, it's a working solution that can positively affect people with sleep apnea. Studies show is prevalent in people with PD (though some people develop snoring / breathing issues based on weight). Thus, these are the 3 biggest problems:
The mask is considered a nuisance (uncomfortable or creating claustrophobic feelings).
Additionally, people may get a runny nose or nasal infections.
Uncomfortable leaks, which keep people from getting enough air.
I would also add that if you're a twist and turner like myself, well, you will probably have to find the right way to sleep with the mask on, especially if you and your significant other are going to co-habitate in a queen or king sized bed. Considering that I'm now physically trying to touch / hit things in my sleep, I feel that I can do it under sleeping conditions in my own room without hurting my wife (when I have nothing but love for her).
7) In the past, I have spoken at length about how I generally like going into a dream world, but recently, my dreams are becoming more prone to wild arm movements. One example of this happened the other night, when I woke up the other night to feel trapped in the bedroom. I couldn't find the door or the light switch, and a feeling of anxiety came over me. Was I at the mercy of some ghost or demon that was going to suck the life out of me in a room where nobody would rescue me? That might sound funny to look at it that way, but that's not my intent. Instead, I state it to discuss a new level of PD effects with my life.
8) I have also spoken at length about my love of music, and how I feel that it can truly help us relax,let the dogs out, or go crazy to. I hadn't heard this next song in ages, but it came on the other day, and I just felt a sense of some extreme force for change. It's the same thing that exists in Neil Young's "Rockin in the Free World," Hendrix's "Voodoo Child," the Doors' "The End," MC5's "Kick out the Jams," Allman Brothers' "Whipping Post," and Joy Division's cover of the Velvet Underground's "Sister Ray." Sometimes, we just need raw, live energy like The Chambers' Brothers' "Time Has Come Today," which expresses how something needs to be said and done to make things better, even if it's just us facing down the PD demons.
9) Spending more time in my wife's garden, both to check out the flowers and to drain the ponds. Siesta Zone more often is a good thing. With that said, it's beginning to look a lot like spring!
9A) Since I'm giving mad love to my wife's creative side, here are some of her stained glass creations.
10) The new Avengers movie was great, and it's decent popcorn entertainment on the big screen. I recommend checking it out. Go to a matinee if necessary, it's worth it. If you need to, find a teenager to watch it with. That's what I did when I went with my one tutoring kid and his father. I'm sure said person will refer to the movie as exceptionally "cool" since it works really well on that mindset. And yes, I will admit to feeling 14 in my appreciation of the movie.
11) Last Friday, Heather and I took my mom out to eat at Appleby's since my dad was away hunting and fishing. It was nice to have a bonding experience like that where we can get together and discuss life and love and the pursuit of happiness. The food was pretty good, too. Normally, we don't do the appetizers thing, but sometimes, you just have to treat yourself to soft pretzels and all of their sauces. Our best tasting one was in a restaurant up in New Hampshire, where everything was top of the charts. Primanti Brothers do a good one as well, but their hot sauce is actually nuclear hot. Use sparingly. I'm living proof (beefcake, beefcake).
If you're not familiar with Primanti Brothers, it's probably because they are a western Pennsylvania / eastern Ohio thing. Their claim to fame is sandwiches with fries and cole slaw on them. Cole slaw is too healthy for me, but fries on burgers... Yep, my wife used to go to a place in Cleveland that did that. And yes, we're hooked.
12) The best way to keep loose and lose the rigidity is to get moving. For me, this is hiking. The other day, I had to drive past a short cliff-side walk (about a mile back and forth, tops), and I was debating whether to do it or not, but as my mind tried to pull me away with its gibberish, I managed to say, "The heck with it."
When I know I'm fighting capitulating to the concept of giving in, I need to do what I can to win since I know the only other option is to lose opportunities and time if I choose to be a huffa-lump on the couch. In this mindset, it's never easy, but then again, it never gets as easy as it does in the beginning days of having it. Thus, we must push through. When we do that, whether it's a walk back and forth on a city block or Jimmy Choi doing Ninja Warrior, we're giving it our best to keep ourselves moving forward.
And remember, not everyone's idea of the best is the same. Thus, we need to all start back in the field somewhere. I think about this now as I feel the dystonia and cramping in my right foot, too. If I sit around and do nothing now, I will lose opportunities I can't make up later. Thus, the bucket list.
This is something I would tell anyone who needs to / wants to push back at the rigidity. Yes, we all have to come to peace with this state on our own, so I won't mandate what others do, but I would really like to see more Parkies out in force, showing their smiles as they show that they are good lovable people who don't deserve to be thrown off of healthcare or treated like second class people. Just remember the historical evidence of Lieutenant Dan making peace with himself.
Moving back to the hike to Chickee's Rock overlook on the Schuylkill River, I got to the top of the trail. Pausing to shoot pictures with my camera, I saw the May apples were coming out in force. When I looked closer, I saw that the little pea sized buds are forming.
It may not have been baby owls, a flock of night herons, a huge elk, or a pair of baby black bears going down the pole. Instead, it represented something beautiful that my wife pointed out to me on a trip some years ago.
Over the years, she's taught me a lot, and she's unwavering in her support. I hope I can continue to pay her back for all that she does for me, little by little.
On that note, I must say that no matter what we are up against, we always get through it. I couldn't think of a person who I'd rather have in my life as both my loving wife and the CEO of (what's left of) my brain!
