Monday, November 8, 2010

Sorry, Dear Reader

It's been too many days, dear reader, since I've posted on here. I have one I'm working on, and I'm hoping it's quite good.  We'll see.  In the meantime, take care and God bless.

Monday, November 1, 2010

Shut Up Already

So how is someone, knowing that someone has something like PD, going to ask “how in the world” something that person did took so long? All I have to say is are you dense? Do you honestly think that I don’t know that I’m more of a hindrance than a help out there on the floor? Why do you think that I put in a bid on a less physical position? Why do you think that my staying employed depends on this position?




Let me explain the entirety of the situation. One particular resident had to have a shower today. This isn’t so bad, but he took me forty five minutes to shower before I started showing symptoms of PD. Plus, I had to get his weight before showering him. Add in some permanent progression from the cold that turned into severe bronchitis to mild pneumonia, and what you have is a patient who takes extra long being taken care of by someone who is extra slow. I have to be slow. I’ll hit the floor otherwise, and that linoleum is hard. This shower took me an hour and fifteen minutes to accomplish.



To further complicate the matter, I was on the second lunch. The first lunch goes at eleven, the second at eleven-thirty. It is the responsibility of the person on the second lunch to fill the water pitchers with ice. This is usually done while the first lunch is away, but it’s not something set in stone, and I was still showering this resident. I started him at ten-thirty, and finished at quarter to twelve.



This particular coworker feels that this ice passing time is set in stone. She was very upset—not descriptive enough—ready to crucify me that the ice had not yet been passed. The way I see it, I was there till three, and as long as it got done before three, then my job had been done. The encounter went down like this,



Her: You didn’t pass ice?



Me: I just got done showering my guy.



Her: I’m not doing it, it’ll be waiting.



Me: Did I ask you to do it?



Her: No you didn’t ask. How in the world did it take you till quarter to twelve to shower your guy when you started at ten-thirty?



Me: I had a choice to make here. Do I rip her a new asshole? Do I tell her to politely kiss my ass? Do I ask her to take a wild guess as to why it took me so long? What I said was, “ it just did.”



The thing is, I fake being okay when I’m at work. I have to. Who wants to know that the person taking care of them is himself sick? There are very few residents who know or have known that I have PD. It’s only those who I feel that it’ll help to know that I have an idea what they’re feeling, because I often feel the same things. (I will never say, dear reader, that I know what they feel, but only an idea of it.) I’m someone who will listen, and for those few, it helps.



Thing is, I’m tired of faking being okay. I’m not. When I say that my employment depends on this position, I don’t mean that I’d quit because I’m pissed off that I didn’t get the position. I’d have to leave because I’m no good to anyone doing floor work anymore. I’m too damned slow.



To my coworker, who will probably never read this, but that means nothing right now, you need to try something. It’s real easy, I promise. You need to remember that I am not you. I don’t move at your speed. I don’t think like you do. I don’t reason like you do. I don’t run according to your schedule. As long as everything’s done before I leave, I don’t believe it matters when I do it. So the next time you need to open your interminable trap, try thinking first. Chances are, the person you’re talking to is fully aware already of his or her shortcomings. I tell you the truth, I really don’t need reminded.

Friday, October 29, 2010

Well, it's about time I posted again.  I'm not going with PD today or with anything inspirational.  I'm just putting up a couple of videos that I find hysterical.  Here are some literal video versions of two songs from when I was growing up.

This one isn't as good as the next, but it's Meatlaof! 



The next one is the coup de gras of the literal video versions... Bonnie Tyler's Total Eclipse of the Heart.  This will have to be done via link since the embedding option for this video is disabled.

http://www.youtube.com/watch?v=lj-x9ygQEGA  Enjoy these and I hope you, dear reader, get a few laughs out of these.

Tuesday, October 26, 2010

Siloam

Another Tuesday night during the fall program at church. This year is a program that we’re calling Transformational Tuesdays. This is essentially a program where we gather together for a meal and then our rector gives us a talk based on the fruit of the Spirit. Today’s lesson was on peace.




Here’s a lesson I sorely needed given the past week. The funny thing is, I realized, before the end of the week, that God had my back the whole time. He let me go through my worries, the whole time carrying me to that point of realization. And then for that to be the topic of the night just floored me (not literally, dear reader, but you get the point). Now, dear reader, if you are not of the Christian faith, you may take a look at what happened the past couple of days and say, “huh… coincidence.” I have to say count the coincidences. How many does it take before a coincidence stops being coincidence?



The talk she gave was really good, and the reading we did, which I will get into later since I don’t want too much from the talk to seep in to my post. Some is okay, but not as much as will be if I do it in this post. It ended with an exercise in meditation, just sitting in Christ’s presence. That, to me, was the best part of the evening. This meditation thing is something that I need to do more often.



The perfect end to what has been a horrible seven days. When my cold hit my chest, it knocked me down and out. My Parkinson’s symptoms reached levels that I had never before experienced. Naturally, the first thing that crossed my mind was, “will this cause a permanent progression of the symptoms?” The unfortunate answer to that is yes, it did, but not so bad as they were during the height of my illness. I’m stiffer, I’m slower, my hand shakes more, but not so much as it could have been.



Even so, it makes me question how safe it is for me to be transferring people from bed to wheelchair. I’ve described the events of the meeting at work twice now, so I won’t be going into detail of it. But when I called last Friday to request a meeting, it was with a heavy heart that I did so.



I don’t know why I called it. I believe that there was something in the back of my mind that’s tired of fighting this damned thing. How about that, I’ve only been dealing with it for the past year, and I’m already tired of fighting it. Every time I seem to get ahead, I seem to lose something else. I lose a little balance, or a little muscle strength. This beast keeps taking, but only a little.



We talked about peace, and then, even now, I want to cry out from the depths of my soul. My eyes are not dry as I write about it, either. I’m not in full blown water works, praise God. Nevertheless, I want to say screw it. Something deep in me wants to let this bastard do what it’s going to do. That something wants to ask, “Why fight it? It’s going to win anyway.”



Now how did a posting starting with peace turn into a lament? Probably because I need to say it and don’t want to make someone listen to my whining. The blog is safe. If I were to say this out loud to someone, face to face, I can’t be certain that I won’t lose it. I haven’t lost it over this yet, and I definitely don’t want to start now. I can put my heart into the blog and never go past having some wet eyelashes. It’s safe here.



Plus there’s the knowledge that if you’ve gotten this far, dear reader, then I can be sure that you want to hear it. When I’m among people, my instincts are to not show weakness. What people can see—what I want them to see—is someone who accepts what’s happening to him and just plods onward. I don’t want someone to see me frustrated because I’m struggling to open the milk carton, or I knocked over something else because I have no concept of how much space is between my hand and an object. I don’t want someone knowing that I’m ready to scream I HAVE HAD ENOUGH at the top of my lungs.



This is where I need the peace that transcends all understanding that we’re promised in Ephesians 4:7. I long for that peace. I yearn for that peace. I’ll make you a deal, dear reader. Pray for me and I’ll pray for you (I’ll do that anyway). Then maybe we both can experience that kind of peace.

Monday, October 25, 2010

The Lord is My Cane

On a particularly bad day, I find myself having to use a cane to walk. As much as I hate using it—I hate the idea so much that I call it my walking stick, on which my nine-year-old little boy finds it necessary to correct me that it is indeed a cane—as I don’t want to become dependent on it, sometimes I must put my stubborn nature behind and use the damned thing. Usually, when I finally break down and grab my stick ‘o’ the walking, I find that it makes my life ten times easier. I actually have something to hold my weight as I move my bad leg.




The fact of the matter is I’m just too stubborn. I’m only thirty-one years old. I shouldn’t be using a cane. I just need to suck it up and leave it to the old fogeys. A cane is great for them, they need it.



But my body reminds me that not everything that’s considered for old people is. I have what’s considered an old person’s disease. No one in their thirties can have Parkinson’s. I say tell that to Michael J. Fox—not to mention present company, dear reader. My point is that I sometimes need the help of a cane but I’m just too stubborn to depend on it.



So it is with us humans when it comes to depending on God. We want to think we can handle it, because that’s how many of us are raised. We’re taught from a very early age to handle our business on our own. Have a problem, here’s how to fix it. We’re just too stubborn. This is a broken world with broken people and we need a crutch. Some turn to drugs, some to alcohol, some to sexual promiscuity. How often do you hear, “yes, I do this or that, but that’s my only vice.” Coffee, cigarettes (for which I am guilty), the internet, porn websites; these are all vices that people have to get them through a bad day.



The good news is we don’t need those things. (If I repeat that a hundred times a day, maybe I’ll actually succeed in giving up smoking, but that’s for another discussion.) The great news is through faith in Christ Jesus, we don’t need those things to lean on anymore. (A hundred times a day, Jon, a hundred times a day.) By dependence on God through the resurrection, we have all the crutch we need. And what a vice it is.



And yes, I do have a Bible passage in mind as I write this. It is 2 Corinthians 1:8-10. Before I continue, I must make this disclaimer. I am not a theologian by any stretch of the imagination. I have no kind of college degree at all, let alone one in theology. These are just my comments on what I’ve been reading. The topic that I see in this one is dependence on God. I’m just hoping that I’m interpreting it correctly. Feel free to leave a comment if you disagree with anything that I write.For the sake of reference, I’m going to go ahead and type out the passage.



“We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us.”



Paul and his companions found it not necessary, but crucial to put their entire lives in God’s hands. I can’t speak to the peril in Asia, because I don’t know. I do know that it was peril to the point of death. This isn’t surprising, since during this period in history, Christians faced death every day on the basis of their faith. Despite the threat of death, each and every day, Paul and his companions put their lives in God’s hands to go out and preach Christ crucified.



Don’t I wish I was better at that dependence on God. I’ll refer back to my earlier post and retell my story from there, as it illustrates the point nicely. This marks the second time that not feeling well has caused what appears to be a permanent progression in symptoms. My fear with contacting the front office at work was that there would be nothing they could do, no other position to put me in so I could continue working. This caused a great deal of stress over the weekend. I spent too much time worrying over whether I’d emerge from today’s meeting with a job.



If you look at the Jordan river during flood season, it looks like nothing you want to step into. Overflowed banks, rapid swirling currents, it looks a mess. But God wanted the Levites to step into that while carrying the Ark of the Covenant when God led the Israelites into the promised land. And He stopped the waters. He didn’t do it before they stepped in, but after they did, at the last minute.



Well, that’s how God’s timing generally rolls. He gives us a set of obstacles that we can’t overcome without His help, then tells us that we must first step in. It wasn’t until I had that meeting/conference call that I realized that it was okay. There’s the possibility of a position with equal pay that will hold me for quite a while yet. I look left and see a wall of water. I look right and see the same. I look down and the ground is dry. All I can say is, whew. The LORD will take care of us. We need to be patient, but it will happen. God is my cane, and for that I’m overjoyed.

Okay, Okay! I Get It!

Well, dear reader, I am taking that new direction after all. If you’ve ever wondered how God speaks to us, I’ll tell you there’s many different ways. One of those ways, often He does this, is to use other people. I put up a post earlier that I may separate my comments on my Bible reading from this blog and make two separate ones. A few hours later, I got a comment from one of those dear readers that I shouldn’t do that, that I should keep the spiritual stuff in it. After making a reply comment to find that a coworker liked my posting, “Bean Soup.” Sometimes, I need hit over the head, but I can take a hint.

Now What Was I Worried About?

Well, I’ve decided that if I want to talk about my faith too, then I need another blog. This one’s supposed to be more of a journal of sorts, so, while my faith is a valid thing in my life, and there is more to life than PD, it’s better, I think, if I create another blog for my… spiritual journal I’ll call it. Either way, I can use this to comment on life in general, and the other for my thoughts as I study my Bible. Yes, dear reader, I think that What’s Shakin will be better if I separate the two.




That being said, onward. I called into work on Friday to ask them if we can go over options that would let me stay at the job, as since that horrific cold I am finally getting over exacerbated my PD symptoms. The good news is that they’re not so bad as they were last Tuesday. The bad news is that my symptoms seem to have still taken a permanent progression. At the height of this, when I went to the ER to be seen for not being able to breathe, my walking was evidently bad enough that the nursing assistant at the front desk put me in a wheelchair. The worst part of it is I was thankful she did that, because my right leg was so stiff that it hurt.



Today, it’s not hurting, but it is definitely weaker. Moving my right leg while walking seems to feel like I’m walking through a river of sludge. It has certainly slowed me down, and it’s not looking to go all the way back to how it was before I got this cold. Damn it anyway.



There I go getting off topic again. Anyway, my symptoms are still worse than they were before I got sick. That being said, I worry about transferring residents from their beds to their wheelchairs. Is it safe for me to do so? I have to admit, I need to put a little more faith in people. I spent the weekend worrying about whether I’d emerge from that meeting still employed. Or maybe I should have a little more faith that God will take care of me. (And yes, dear reader, I’m going back to my journal style in this blog, but that’s still a part of my life, so I won’t shy away from the subject either.)



I was asked to call in today after eleven ‘o’ clock this morning. I assumed it was to set a time for the meeting. The meeting took on the form of a conference call. What I was informed was that a full time restorative position was just posted. This was better than any other options than what was in my mind. I was thinking that there could be a transfer to housekeeping, dietary, or even activities. The pay would have went down some, but I would have been employed. Restorative is perfect, since I’m working with mostly ambulatory residents. There’s help around everywhere, and I know that the therapy staff is willing to help ambulate for any resident that I ask them. The hours are 9-5 instead of 7-3, but that would be worth it. The best part is I would stay at my current pay rate.

Sunday, October 24, 2010

Bean Soup

I love bean soup. I adore everything about it. It’s tasty, inexpensive, and easy to make. Put a ham shank in a pot with a jar of great northern beans, water, onions, potatoes, carrots, and some spices and let it cook for a few hours. Personally, I believe it needs to cook for at least four hours, but some would differ on the time to take. It’s a long process either way, but in the end, it’s worth it.




The key to a good bean soup is to let it cook long enough with the ham shank. This allows the flavors from the bone to seep through the soup giving it a base of smoky ham flavor. It’s the final touch when it’s done that gives the soup a hearty, outstanding flavor and ranks it as one of the greatest cold weather meals of all time. (That, dear reader, is my own personal opinion, of course. The other thing that happens is the beans, as the liquid cooks down, thickens the water some. So it’s more like a stew than a soup, but we’ll still call it soup.



But there’s one problem that I have with bean soup; the process of making it. Once I’ve got everything together and in the pot, I have to let it cook. And, by the end of the first hour, the smell of the soup has wafted through the entire house. What’s the problem with this? Well, dear reader, the problem is that I have to smell it. It’s not that I hate the smell, far from it, in fact. It’s that I love the smell, and I get HUNGRY. I want at this point to just sneak a bowl of it. So I go into the kitchen, grab the spoon, and stir it, the whole time wanting to take some out and eat it.



That’s not what I do. As tempting as it is to just have a bowl, I know that doing so before it’s ready means that I’ll be eating an inferior bowl of soup. But I still have to smell it. And I’m hungry. It hasn’t reached its full maturity yet. It won’t be at it’s best until it cooks enough, so I have to deal with the smell and just let it be. This is difficult, since we live in an instant gratification world, but instant isn’t always better. And yet, it’s almost torturous to do nothing but stir my soup and do nothing else.



What is that, dear reader? You thought I was going to start talking about my faith despite suffering? You want to know what bean soup has to do with it? Don’t you see the analogy in it?



Much like bean soup, we will be changed. The bodies we have here on earth will pass away, but we will be given new ones. Bodies without defect, without disability, without suffering. How can I have faith even as my body rebels against me? Easy… this is only temporary.



In 2 Corinthians, Paul tells us, “we will not all sleep, but we will all be change—in a flash, in the twinkling of an eye, at the last trumpet. The trumpet will sound, the dead will be raised imperishable, and we will all be changed.” This demonstrates my hope. Do I want to be healed of my Parkinson’s? There should no doubt to you, dear reader. I’m often jealous of those whose bodies work as they should. I can’t dwell there, though, because the promise is that this is only temporary, even though it will last the rest of my life here on earth. In the next verse, Paul continues, “the perishable must clothe itself with the imperishable, the mortal with the immortal.”



How do I, the mortal, clothe myself with the immortal? The answer is found in Christ’s sacrifice. Through that sacrifice, I can have communion with God. By the redemption brought by Christ crucified, I, the mortal, can clothe myself in the hope offered by God, the immortal. It is through faith, hope, and love that I find my strength. If I can’t have what I want in a body that doesn’t rebel, then I’ll just wait on the bean soup to be done.

Friday, October 22, 2010

A New Direction? We'll See

So the question is, how do I keep my faith with everything that’s going on? How do I keep joy when everything goes to hell? When I’m excellently stiff; when my hand is shaking like a leaf in a tornado; when I pull out my walking stick because I can’t stop leaning to the right and my knee wants to say “no” to walking every fifteen steps or so; how do I cry out to God instead of cursing his name?




As simple as the answer to these questions should be, the more I think about it, the more I realize that these are deep and rather difficult questions that actually bring to mind other questions that I first need to answer. Am I using this blog properly? God gave me a love of writing. Should I be using this blog as an inspiration to people? Better yet, should I be using this blog like one of those yellow flashing arrows you see in construction areas pointing to faith in Christ? Or should that arrow be neon, like the ones you see (forgive this analogy, dear reader) at strip clubs. Although, you’ve got to admit, that could be great fun. Just imagine it for a second. An arrow alternating between neon pink and neon green around the outside edges. This arrow is pointing straight toward the sky. On this arrow are words, also in neon, alternating between neon blue and neon purple. Instead of reading LIVE GIRLS XXX, it reads LIVING GOD +++.

What do you think, dear reader? Is that too offensive, or is it pretty much the sign (I love wordplay) that we humans need?



I considered another problem with taking this blog in that direction. I had to contemplate whether going there cramp my writing style on which some of you whom I have addressed as “dear reader” have given me some of the most wonderful compliments. I had to think whether my dry, sarcastic sense of humor would fit in with the subject of faith vs. trial. I just need to look to the sermons my wonderful rector gives. I love her dearly. This is a woman whom, if there is going to be grapes put down the back of someone’s shirt, she’s the most likely to be the instigator. Really, given my church in general, who says you can’t talk about faith and have fun with it at the same time?



Now that my rant is over, it’s back to the task at hand. Answering the question how can I call out to God when I’m suffering the most? PD is no joke. It sucks more than a Tim Taylor modified vacuum cleaner. If you don’t know what I’m talking about there, dear reader, refer to a nineties sitcom called “Home Improvement.” That’ll probably give you the best idea there. What I find rather amusing is that when my PD is at its worst, that’s when my faith is at its best. Crazy idea, isn’t it? Makes no sense. Common wisdom says that’s when I should be alienated from God. Common wisdom says I should be cursing God for causing this pain.



Or should I? Maybe, just maybe, there’s another angle to consider. Maybe God didn’t cause this suffering that I have. Maybe God didn’t cause any of the suffering in this world. What a thought, isn’t it?



Let’s take a look at the state of the world for a second. I’m going to use the NFL as an analogy. It is a culture not of what have you done for me lately, but what have you done for me in the past five minutes. It gets rather comical. Jon Gruden used to be the coach of the Tampa Bay Buccaneers. He even coached them to a Super Bowl title. Five years later, he was fired. As I see it, any coach who coaches a Super Bowl winning team is a good one. Maybe it was the players and not the coach that made them into a losing team. The Raiders are worse. They’ve hired and fired more coaches in the past five years than anyone else.



That’s the state of the world, though. We’re taught, from a very early age, to look out for ourselves first, then everyone else after. Look at the divorce rate. What causes divorce? Most often it’s “he didn’t do this for me,” or “she didn’t do that for me.” Interesting, isn’t it? The focus of the people getting divorced was on themselves, not on the other person. Or how about the workplace? I can’t tell you how often I hear about how “this one doesn’t help me,” from one coworker, and then I have the other come up and say the same thing about the first one. My favorite is the coworker who runs around screaming how hard her assignment is and how she never has help, yet gets insulted when someone tries to help her. Did I miss something here? Holy crap! It really makes a person want to look at her and say, “get over yourself.”



To get back to my point, this is what we do with God. We say, “why should I follow God?” We say, “what has God done for me? Look, just look at my life.” We say, “God abandoned me, he doesn’t care.” Consider for a second, that it’s not about what God has done for you. Consider that maybe he isn’t the cause of all the suffering in the world. Consider that maybe God hasn’t abandoned us. Consider that, in reality, it is we who have abandoned God, and it was Christ Jesus who paid the price for our redemption. “The wages of sin is death,” Paul said. It was Christ, through suffering, who paid that price and won victory over the grave.



It’s not a promise of an easy life that Christ put out to us. The blessings we’re given cannot be measured in material objects. Some theology would have us believe that if we prayed for that huge house, or that fancy car, and sincerely believed we would get it, then we would. Some theology has reduced God to a vending machine. No wonder we ask what God has done for us.



The promise Christ gave us was a share in suffering. We live in a broken world. The apostle Paul spoke of a “thorn in his flesh” in second Corinthians. He said that he prayed for healing three times, and did not receive said healing. Some scholars believe that the thorn in the flesh was a lasting, lifelong, physical impairment like epilepsy. Yet, Paul did not curse, God. He preached all the more. He used his suffering as an inspiration to other believers in staying strong in their faith. He also said in that same book, “when I am weak, that’s when he is strong.”



I look at this post, and realize I have not even begun to answer the questions set forth at the beginning of it. So I’ll continue on. Maybe I’ll even find room for some sarcastic wit a good bit of the time. I like humor. It makes me laugh.

Thursday, October 21, 2010

I Have Decided, Colds Suck

This is my first good cold with PD. Someone should have warned me about this. I can’t take anything for the cold except for regular mucinex, and that’s not working either. I cough and everything stays in the chest. I take my PD meds for what reason is beyond me. Since this cold has me feeling like someone kicked me in the chest, that’s enough to send my symptoms raging into never before experienced heights. I’m even having trouble with the typing as I’ve clicked letters twice more than a few times. Sorry for the whining post. Funny thing is this posting is to be followed by one answering the question posed to me a while back, “how do you keep faith?”

Wednesday, October 20, 2010

A Political Farce

    Here in the Commonwealth of Pennsylvania, it is time now to elect a new governor, along with the nationwide elections for Congress.  I don’t exactly know how you feel about it, dear reader, but I have to say that I’ve about had it with turning on my television to see these political attack ads.  I mean, really?  Are we truly going to conduct our elections this way from now on?  Count me out.  I get sick when the ballgame goes to commercial to hear stuff like this:
    “Joseph Numbskull twice raised property taxes, costing the taxpayers millions.  Mr. Numbskull claims to be a stand up guy, but when he was 23, (let me insert here, dear reader, that Mr. Numbskull is a 54-year-old man by now), he took a shortcut through an alleyway when he was late for work.  When he jogged past one particular doorway in his haste, he breathed in the second hand smoke from a marijuana cigarette.  After all this, he was two minutes late and, even worse, he clocked in with a contact high.  America can’t afford to put a burnout who can’t be on time in the senate.  Joseph Numbskull.  Don’t vote for a lazy burnout. (Hi.  I’m Adam Shitforbrains, and I approve this message.)”
    Did I miss something here?  So, Mr. Shitforbrains… why exactly, if I’m not voting for Joseph Numbskull the tardy burnout with a contact high, should I vote for you?  What’s your platform? What changes do you see that need made, and what exactly do you plan to do to try to get them fixed?  American politics has become a relative farce of “Where’s the beef?”  Now, when I see ads for products, with the exception of that Wendy’s ad, those ads are about the virtues of the product and not the faults of the competition.  When you do see faults of similar products, they’re rarely mentioned by brand name.
    Then again, attack ads could make commercials more interesting.  It could be downright fun.  Come on, dear reader, think about it.   What if every ad attacked something else.  Well, there is another series of attack ads, and that belongs to those ones who tell the truth about tobacco.  There’s the broken glass product recall and all kinds of things.  It is the truth, after all, and they’re not selling anything, but how fun would it be if the tobacco companies fought back and ran their own series of attack ads?  You’d get something like this:
    “These people say they’re telling the truth, that smoking is bad for you, and that you should be a non-smoker.  But is it the truth?  Or is it they that are lying to us?  Being a nonsmoker has been linked to lethargy, sloth, not getting enough fresh air, and sometimes even a lack of social interaction.  Nancy Puffaway had this to say: ‘I tried to quit smoking once and immediately noticed that I just wasn’t getting enough sun.  I saw how much time I was spending indoors and it disturbed me.  At work, the nonsmokers, of whom I had just joined, turned away and thumbed their noses at me.  It’s a sin to be new to the nonsmoker club and some of them even said that I didn’t count as a nonsmoker, because I had just quit.  It was so horrible that I had to take the habit back up so I could have my friends back.’   This is the truth.  If you quit, you’ll lose friends.”
    Or maybe you’d see the tobacco companies putting on ads like the following (Some of the information in this is truth, the PD related stuff.  But it’s still just as ridiculous):
    “Studies have shown that there is less instance of Parkinson’s Disease in smokers than there is in non smokers.  Parkinson’s Disease is a progressive, neurodegenerative condition that will disable its victims slowly over a long, torturous time frame.  The nicotine in cigarettes has been shown to be neuroprotective and can help in the prevention of developing Parkinson’s.  Are you willing to take the risk of developing such a horrible disease?  Start Smoking.  Don’t get Parkinson’s.”
    Is my point made?  Can you see how ridiculous these ads really are?  The sad part is that they run these ads because they are effective.  The only way to stop them is with public outrage on the whole situation.  We vote for people because of what they say about the other guy.  Doing this, they don’t have to say what they’re about.  They don’t have to make promises that they have no intention of keeping.  What do you think would happen if Americans stood up in one collective voice and said, “If your campaign is based on attacking the other guy, then we, as a country will vote for the third party candidate to keep you both out of office?”  I’m betting a campaign would then be based on the virtues of the supported candidate, not attacks on the other one.

Sunday, October 17, 2010

In the Beginning, I Shook

    Well, this wasn’t my next posting.  Not after I saw that portajohn thing.  I did, as I read my postings again, say something about fleshing out the story of how all this started.  How my life changed in a hurry is how I think I said it.  Let me check… yeah, that’s the wording I used.  Not that it’s all that important.  This is a week that lives in infamy for me, just to put it out there.  I spent the entire week thinking that I was going out of my gourd. 
   
    On a Sunday morning, we got stuck working, once again, with four nursing assistants to fifty-two residents.  This is always a busy day, especially when a good seventy percent of the residents required total care.  When you have to wash the resident, dress the resident, and put the resident in his or her wheelchair with no help from the resident, the time you have to spend with one person increases exponentially.  The assignments said we had thirteen residents to do this with, minus those washed and dressed by the night shift. My coworker-slash-friend and I decided that we would just tag team the two assignments. 
   
    All went well before breakfast.  When we got done with care and started passing trays, we had twelve people left and, since it was a Sunday, no showers to do.  Everyone would be getting a basin bath on this day.  The day turned around when she (I’m not using names here) went in to set one particular resident up with her wash basin.  The problem with this resident is her timing in trying to hold a nursing assistant in her room to do ten million things that could probably wait is bad to be fair.  My thoughts on the matter of that are immaterial.  It suffices to say that I think that habit is not accidental.

    With my coworker being held in that room, I’m rushing to get things done by eleven.  By the time my coworker emerged from that room, it was quarter to eleven with three people left, one of which is going to take a good twenty minutes to bathe.  I was wigging out.  I give props to my coworker still being calm, but I put my hands on my forehead in exasperation.  That’s when she said to me,
   
    “Go take a break.”

    I argued this idea.  There was too much left to do.  She wasn’t having it.

    “Jon, you’re shaking,” she said.  I wasn’t aware of it.  At that point, I didn’t think anything of it either.  I did what I was told and went down to the break room and downed a cup of coffee.  I got back to the floor, we finished getting everyone washed, and that was all for that on that day.

    Jump forward to the following Wednesday.  I had a rehearsal for the music team at my church.  I had been shaking the entire day to that point, and I told the director that I felt like I was losing my mind.  I had sent out a text message the previous evening that I didn’t even remember sending.  The proof was there on my phone.  I’d have been okay with that had I been drunk, but no.  I hadn’t had an alcoholic beverage in a couple of months.  The main problem with the shaking was I couldn’t make it stop.  I was anxious enough that to this point, I didn’t even notice the nature of the shake.  Otherwise what happened later may have rolled differently.

    When I got home, I decided that an anxiety attack was one thing, but the fact that I was shaking was a bit worrisome.  So off to the Emergency Room I went.  I told them I was shaky, I was anxious, and that at this point I was having a bit of trouble walking.  I attribute that to the extra stress I was under.  It was sad, too.  I couldn’t walk without holding on to something.  They put me in a wheelchair and then the wait.  The wait was so long that I wound up calling off from work the next day.  When I got to the back, they took a CT scan of my head, told me to pee in a cup, gave me some Ativan, and sent me home.

    In the morning, after having calmed down a bit, I noticed that the shakiness was still there.  That’s when I noticed the main problem.  Only my right hand was shaking.  I held it up.  It shook.  I held up my left hand.  It was solid.  I spent about twenty minutes alternating hands.  Talk about a good scare, this beat anything I have ever experienced except the day I came down with appendicitis when I was twelve.  Even that was just painful.  Given my experience working neurosurgical step down at UPMC, I learned enough on that unit to know that this shaking in only one hand was not a good thing.   Then I noticed that if I moved my hand, the shaking stopped.  I had no idea that this “resting tremor” was the type of tremor most often seen in Parkinson’s Disease.  Not till I got stupid much later.

    The next few months blurred by.  First I was sent for an MRI  of my neck.  That showed two bulging discs that bulged to the left.  They explained the pain I get in my left shoulder nicely, but not the shaking in my right hand.  Next was an MRI of the brain.  Then was a nerve conduction study with an EMG.  First the shock you from the outside, and then the put a needle in your muscles and shock you from the inside.  This was the most interesting test.  Although my hand and arm shook uncontrollably, this test came back normal.

    There, that wasn’t as hard as I thought it would be.  Don’t get me wrong, I hate recalling that process.  And I sit here now, in front of the computer, telling this story for you, reader.  I don’t know if there is any benefit to it, maybe some kind of a therapeutic thing.  I don’t really know.  But that’s how it began.
   
   

Dammit, I Said the Schmidt House

    Oh, the Kansas City Chiefs have to be my favorite team outside of the Pittsburgh Steelers this year.  This marks the second time I have gotten a good laugh at either the team’s expense or a player’s.  First there was the accusations of one of their defensive linemen getting past the other team’s offensive line by the old grab and twist, not of the guy’s jersey or arm, but by his jewels.  I posted a link to that article on my Facebook page, but alas, I can’t remember the guy’s name.  I just know I laughed out loud at the different phrases and idioms that the author used throughout the article.
   
    And now, if you’ll excuse me, I found out that the shit has hit the fan in Kansas City this year in regard to the running backs and their inability to hold onto the football when catching… er, dropping… passes.  The Chiefs backs are notorious for dropping passes.  This lack of receiving has the coaches rather pissed off.  So, since they have played like shit for the past few years (this season of course is excluded), the coaches have decided this season to make the backs practice in the doghouse—well… the shithouse truly.
   
    That’s not an idiom for giving them extra ire from the coaches.  They’ve been, since training camp, been doing catching drills while sitting in a portable commode.  Yes, the portajohn.  The old, stinky, plastic toilet with the urinal on the side and not even the courtesy of some hand sanitizer.  I saw this on ESPN today and my first thought was Holy Crap!

Saturday, October 16, 2010

Time Flies When You Shake Your Stuff.

    Has it really been  since March that I’ve bothered with this thing?  Holy crap do I need to get better at the old organizational skills.  Or maybe if I delete some things from my schedule so I have a little more time to do those things that I enjoy—like writing, for instance—then maybe, just maybe, I’ll be more apt to sit in front of the computer and type out my musings on a more regular basis. 
   
    This blog was originally intended to cover the topic of Parkinson’s Disease (namely my own).  I remember back in March struggling with just the concept of having this bastard so much it was all I could do not to scream.  I can’t exactly say the same now, since I’ve been living with it and have been learning to adapt to it, but the temptation of wanting to let out my frustrations in a piercing yawp of  fury and exasperation is still way too enticing.     
   
    To be fair, I can’t say that I have adapted all that well to the beast.  Not yet.  As of now, I have to say that I’ve had to call off from work for various PD related reasons.  Sometimes I’m too stiff and my body rebels against motion.  Sometimes I shake so much it affects the coordination in my left hand, too.  (I have a story about that one too, but that’s for later.)   On other occasions, my right knee wants to give out with no warning and I know that if I go to work, then I’ll drop a patient during a transfer from bed to chair.  The last call off was when I fell and twisted my ankle.  The good news was no swelling, the bad news was pain.
   
    When I do wind up calling off from work, then starts the inner lamentations that I don’t ever say out loud.  This is the first time I’ve put them out there thus far, and may or may not be the last.  This is where I start to wonder how long I’m going to last with the job.  At what point do I get called into the front office for them to say, “I’m sorry, Jon, but you’re too dangerous to be working the floor?”  With Jenny’s being a stay-at-home mom, the issue of health insurance becomes huge.  I need it, and fear losing it.  The VA will help me, but that still leaves Jenny and Christian flapping out there in the wind. 
   
    But my biggest frustration, the most annoying part of this whole thing is not the falls.  It’s not the stiffness, or the shaking.  It’s trying, when I am at work, to open those damned-blasted milk cartons.  The eight ounce cardboard milk cartons like you, oh reader, got in school.  Follow me here, reader, and I’ll explain to you how it is.  Do you remember, at lunch time, going up for your tray of mystery meat and discolored corn, how you always got your little carton of milk from the lady with the extra tight hairnet which you were sure was the cause of the contorted scowl on her face?  Yeah, that’s right, the scary one who only ever said, “White or Chocolate?” in one of those I’ve smoked for forty years and now I sound like a man voices.  Don’t tell me you don’t remember her, reader, cause she is the source of most childhood nightmares.  Do you remember also, at times, when you sat down with said carton of chocolate milk—white milk wasn’t as popular in the kids without parents around lunch room—and forgetting to look at the carton for the side that says open here and opening it from the wrong end?  Do you remember how hard that was?  Exactly.

    As I was saying before I went off on my little tangent there, is that this was a blog about PD and my life with it.  So the question is do I find some way to make it PD related or do I go off on tangents about other things.  Don’t get me wrong, there will always be posts about my PD, because it’s just part of my life in general now.  My next posting will probably be a fleshed out version of the  story of how my life changed in a hurry, but I’m thinking some more general musings on unrelated topics will be good for the soul here, and will be a lot more fun.  What do you think, reader?
   

Tuesday, March 9, 2010

Epiphanies

Today was not a good day. Today, I had to let my employers in on what’s happening with my being treated for PD. There’s no way around telling them this. The meds I’m on have side effects, some of which could affect being able to do my job. I am experiencing three: dry mouth, postural dizziness—essentially, I get dizzy whenever I change direction or position—and falls. Since I started on this med, I have eaten dirt more than a few times. I haven’t fallen at work because I can feel it coming and there’s almost always something to hold on to. Home’s a different story. That’s where all the good falls occur.




I started this process by talking to a union rep. She told me that I must let them in on it, that if I don’t disclose my condition and a resident gets hurt, then I could lose my job. She offered to go in with me to talk to the administrator. This was something that she didn’t have to do. The support was nice.



So there I stood, on the verge of tears, telling the administrator and the DON that I am being treated for PD. Time of my life, joy joy, and all that other happy horseshit. I didn’t stay standing for long; a chair seemed excessively inviting. I was slightly proud of myself that I never made it into full-blown waterworks. I managed to hold myself together. I was glad that my union rep was there. I almost wasn’t able to speak.



It sucks, having to do these things. There’s a bit of finality to telling your employer that you have such a staggering problem. Now it’s for real. This is actually happening. I can’t live in denial of it any longer. For their part, my administrator and DON were understanding and full of nothing but kindness. They handed me paperwork for intermittent FMLA just in case I need it and told me to get it in as soon as possible.



Then there’s the problem of falling. It’s bad enough when you’re on your own. When there’s a witness, however, that’s a different story. Laughing is good, except that dizziness thing kicks in and I wind up on the floor, which everyone in my bible study group got to witness. I laughed it off, but it was particularly embarrassing. Of course, I joked about it. “I’m down,” I said sprawled out in the middle of the floor after slipping off the couch. After we closed out the bible study, though, I took my nine pm meds and ran out for a cigarette. My arm was jumping all over the place. I needed to get calmed down.

Friday, March 5, 2010

Off the Deep End.

Let me apologize to my readers.  I wound up being up in the middle of the night, despite being incredibaly tired.  At this point, I still haven't been to sleep, and it's 8:30 in the morning.  I made the mistake of looking too far ahead.  Way too far ahead.  Couple that with a strong urge to write, and what you get is a little wacky-crackyness. Then again, if I'm don't publish when I'm a bit wacky-cracky, then what the hell am I doing?  I can assure you, reader, that these things don't happen often, and I'll be okay.

Thursday, March 4, 2010

The Doldrums

And I was determined that the next couple of posts would deal with something other than PD. That is until I started experiencing insomnia. Now I’m sitting in a completely silent house with nothing but my thoughts. This is rather irritating. This gives me plenty of time to hit the doldrums.


That’s a real issue. I don’t know if I fall into depression often enough to require happy pills, but I’m not too happy tonight. Looking to the future is bleak business, but once again, I can’t seem to help myself. They come, my thoughts, in waves of unscrupulous misery. Knowing that I’m not going to just slow down, but I won’t be able to do anything on my own in that future.

It’s a future of wheelchairs and frequent trips to the bathroom. It’s a future where I can’t open a milk carton, button a shirt, open a pill bottle. As for picking up my guitar and playing it? It’s difficult now, let alone when my left side becomes affected. Most likely by 45, I’ll be walking with a cane. By 55, with a walker—if I’m having a good day.

Yes, the depression hit. Or maybe it’s more like mourning. What am I mourning? My independence. My ability to do for myself; without having to rely on someone else. I’m a caregiver by trade. This is what I do. This is who I am. This is who I’ll no longer be.

With the passing of time. Yes, with the passing of time I’ll be less of myself. I’ll be slower, unsteady, ready to fall at any time. I do enough of that now. With the passing of time, it’ll get worse. No miracle drug is going to change that.

So, I have to ask, did the insomnia bring on the depression, or the depression bring on the insomnia. Does it really matter? Not especially, I think. The facts are in: I’m awake, and I’m not feeling chipper about anything right now. Then again, tomorrow’s always a new day. I look forward to the sun.

Arguments and Sunshine

If you and your spouse think that your marriage might be in trouble, then you need to watch this new show called “Marriage Ref.”  They took two couples and recorded some of the most ridiculous arguments.  Being male, I do have some level of feeling for the men in these altercations.  What man out there has never argued with his wife about wanting to do something stupid and rather ludicrous?  That being said, these guys took things over the limit as to what they were arguing about.  I have to say, before I describe any of this, come on guys, dealing with women is hard enough as it is.  Don’t go on TV arguing with your wife about these things.  Isn’t dealing with women hard enough?  We’re already considered idiots by the fairer sex.  Why would you reinforce that stereotype?

The first one, dude wanted to keep a stuffed bulldog.  No, not one of those fluffy little toys you but for children, but a real one that took a visit to the taxidermist after it died.  I understand that you watch scrubs.  I understand that you think Turk’s dog is a riot and the arguments with the woman(sorry, I’m not remembering the character’s name) are a riot.  While I laughed my ass off throughout, I have to wonder if dude stopped to listen to himself before he agreed to do this show.  It’s funny on TV, but to do in real life is rather… shall we say… foul.  Makes me wonder if he’ll stuff his wife when she dies thinking that funeral expenses would be a lot less.

The next one wasn’t much better.  He was trying to argue his wife into installing a stripper pole in their bedroom.  I’ll pause for a moment while you take your hand, place it in the middle of your forehead, and proceed to shake it.  Go on, you know you want to, I’ll wait…

Are you finished?  Good.  To this man I must say, are you dense?  What woman in her right mind would consider allowing that to happen?  Quit reading Penthouse Forum.  We’re talking about real life here.  Those stories in that magazine are as fictitious as Stephen King’s novels.  Women don’t dance around a pole unless they’re paid well to do so.  An unwilling participant just ain’t sexy.  Consider yourself lucky that she gets naked with you.  You’re trying to spice up your marriage?  Go to the closest adult book store, walk past the Penthouse Forum—that one is giving you horrible ideas—and buy one of those sexy games.  Those are fun and will spice things up without going overboard.  Yes, the stripper pole is overboard numb nuts.

The sun is out today.  It’s about damn time.  A person can get tired of gray, overcast skies every day.  Some sunshine does a parkie good.  It gives a little vitamin D.  I’ve been rather enjoying my trips outside to smoke today.  The only problem is that snow is white.  If it were blue, then there would be no problems.  Alas, its whiteness only reflects the sun making it hard to look at.

And speaking of snow, I have to throw my sarcasm around again.  Will everyone out there please realize that you are not meteorologists?  You have training in the field, yet you want to practice what you don’t know, have no hope of knowing.  Every week I am bombarded with people who are saying, “there’s another storm coming in.  Two systems are supposed to collide.  We’re supposed to get another eleven to eighteen inches.”  What?  The last time that was “supposed to happen” was last night.  We didn’t get one snowflake, let alone another eleven to eighteen inches.

I’m aware that a powerful snow storm blew through here.  I’m aware that it dumped two feet of snow in an area that only gets a couple of inches at a time and isn’t used to this.  But the reputable source called the weather channel (come on… you know that one… they employ trained meteorologists… broadcast the weather predictions on the television) said that a “winter powerhouse” only really blows through every fifteen years or so.  This means that we’re not due for another dumping like that until 2025.  So will everyone PLEASE STOP PANICING!

On a sadder note, we at Trinity Episcopal Church were struck with a great loss yesterday afternoon.  A friend, choir member, and all-around good guy passed away.  Since this is over the internet, and I do not have permissions from his wife, I cannot in good conscience put his name for any old person to see.  Those who are members of the church and reading this, you know who I’m talking about.  May God grant him rest as he brings him into the company of heaven.

Wednesday, March 3, 2010

Did I Really Complain?

Was that me who was complaining about the price of Azilect? Was it truly I who threw a fit about how much the co-pay was on it? While I stand that $60 is ridiculous, it works so well. No stiffness at all. My back doesn’t hurt, the top of my calf up through the back of my knee isn’t cramping. My right foot isn’t killing me. This morning took some time to get out of bed, but once I got my meds in me, everything seemed to diminish. My worst problem is some cotton mouth with no good hallucinations to go with it. The advantage to that is it keeps me drinking the water.
Now I’m not trying to sell anyone on the Azilect. I’m just trying to write down my own experience with everything. While for those whom this drug works, it really works. It can be a really nasty event for some people, too. I know I guy for whom Azilect was prescribed and he’s had speech problems ever since. For confidentiality’s sake, I shall not give a name for that. It’s something I have to be incredibly careful with. I need to follow the instructions on not only that, but also the dietary restrictions that it comes with—so I don’t have to follow the dietary restrictions, but see my last post for why I plan to anyway—and I need to start reading the warnings of everything over the counter that I take. I can’t even start a dietary supplement without checking with the doctor anymore.
The problem I’m faced with isn’t that the treatment option is working, but it’s working too well. This only makes the probability of this being Parkinson’s Disease(PD) more likely. Some would say, “you’re young… you have a lot of time left before this gets exceedingly bad.” And those fine folks would be right. I do have a long time before that happens. PD is a progressive disease, and it tends to progress even more slowly in those with young onset PD. On my days where I’m taking it one day at a time, this is how I consider things. Plan for the future, but don’t forget to live for today either.
I don’t always do that. PD deals with a shortage of dopamine producing cells. Any time you mess with brain chemicals and enzymes, you have a short-circuiting brain. This is why depression happens in around 50% of PD patients. I can’t say that I’m having any kind of depression issues, but I have my moments where I look too far ahead, and that looks rather bleak.
Today I’m okay. That’s half the purpose of doing this blog. To help me in keeping my thoughts on the here and now and not on what’s coming. There’s a lot for me to learn about my condition, and as I learn things, I can pass them along. Like the new research into PD. It seems that some researchers are starting to believe that it’s an immune system disease. They even claim that a vaccine can stop progression in people with advanced PD and reverse the symptoms in those in the early stages of the disease. There’s hope out there, but I’ll have a level of skepticism until there’s some kind of hard evidence. Not only is there no definitive test for this out there (with the exception of discovering lewy bodies in the brain during an autopsy), but I’ve already seen people trying to take advantage of hope for a cure too many times.
Now, I sit here praising my meds, but they haven’t been put to the test as of yet. I’m on vacation until Monday. It’s easy to say that it’s working wonders. I’m not under any kind of stress. While I’ve got some things I want to accomplish, I only need to put in two or three leisurely hours per day to accomplish those things. The rest of my day is spent relaxing, playing on the computer, playing on Facebook, trying to figure out this thing they call blogging, all the while, especially right now as I put these words onto the screen, listening to some classic rock. Today, it’s The Dark Side of the Moon. The true test of this stuff will be when I go back to work on Monday and add my normal daily stress. I’ll let you know how that goes.

Azilect

The trip to the movement disorder specialist (who will henceforth be referred to as the MDS) wasn’t encouraging. To be fair, it wasn’t absolutely discouraging either. I came forth from her office without a diagnosis as to why I’m so shaky, but with a new pill, Azilect, nonetheless. The running theory is it looks like a fish and smells like a fish so we’ll treat it like a fish, even though we can’t call it a fish without another cardinal sign. Right now we have to say that it’s more of a salamander, but it’s more likely than not that you have a fish there.
The Azilect is good stuff. It works (am I supposed to be encouraged by that? I’m not sure) really well. It’s encouraging that my arm is steady as a rock, but the idea that the treatment regimen that’s working is the treatment for early PD kind of sucks in its own right.
There’s other problems with this particular drug, too. Price is the biggest. The co-pay for this is $60. They told me that at the pharmacy and I about fell over. Of course, I paid for it, I have to, anything that can help is worth it. But I get generics for all of $5 and all my other meds have generics. The Azilect doesn’t. Not only is it without a generic form, but my insurance company says that it’s a “tier 3 medication.” This means, they consider it too new and are unwilling to pay out too much for it. I’d like to know who comes up with this crap. Although, with a cash price of $384, I can see why the insurance company feels that way. This is price gouging that we let drug companies get away with. It probably only costs them ten cents to make one pill and they want more than ten dollars per pill. It’s out of control.
Next problem, this is an MAO-B inhibitor. What’s that mean? It means that every medication out there—and there’s a lot of them I can assure you—that says, “do not take if your taking a MAOI” is now off limits. That means my colds are going to really suck because that describes every cold medicine out there.
Then there’s the food restrictions. Oh goody! There is both German and Slovakian blood in my veins. I swear there’s some genetic predisposition to loving all things cabbage. Sauerkraut is out. Salami is out, as are aged cheeses. Bologna, salami, pepperoni, sausage, jerky, bananas, canned meats(tuna, Spam), any aged meat of any kind(fresh is okay); none of these can I eat. They’re all high in an enzyme called tyramine. Tyramine in excess could cause me to have a sudden, dangerous, and even life-threatening spike in blood pressure. To be fair, I also read that this is not necessarily the case with the Azilect. But after reading the previous literature to this, it’s like putting a bowl of sauerkraut at the other end of the swimming pool filled with alligators. You can tell me that the alligators have all just been well fed so they won’t attack me while they’re digesting. All I have to do to get that bowl of deliciousness is cross the pool without paying any mind to the gators. I’m going to miss my kraut.

Welcome to My World

One day, you’re good; life is going at least semi-decently, your young, full of pep, at the top of your game. All of a sudden, with no warning at all, a friend, maybe a coworker notices you’re shaking. It’s been a stressful day so you remove yourself from the stressor for a few minutes, taking some time to drink a cup of coffee. The coffee break makes you feel better. You go back to doing your thing. A few days later, you’re still shaking, except you haven’t been under any kind of stress that day. There’s absolutely no reason to be shaking. Mentally you don’t feel yourself. You haven’t felt all week, in fact.
Off to the ER you go, worried that you might have finally cracked, that you’re losing it. Your heart’s racing, you’re dizzy, and you want checked as soon as possible. The good doctors, I use “good” loosely, call it an anxiety attack. They take a CT of your brain to be sure. They obviously never gave you a good visual assessment, because they miss the fact that only one of your arms is shaking. The other one is as steady as it gets. But you notice that the next day. You also notice that the arm stops shaking when you move it intentionally.
Now instead of just deciding to go to the doctor’s office, which you have already decided because one sided anything is never good, you become a fool. You hop on the computer and look up “shaking in one arm” on Web MD. Who doesn’t do this kind of idiocy anymore? That’s what the internet is for, right: information that you wouldn’t have access to otherwise. The first result that shows up gives you a problem. You’re only 30 years old. That one’s impossible. You click on it anyway you numbskull. The thought is, this is so ridiculous that I’m just going to read it and rule it out. The problem is, you can’t rule it out. A lot of the symptoms in the list fit you too well.
Now don’t get me wrong, I know how trying to self-diagnose works. You read a list of symptoms and you can claim most of them at one time or another in your life. Who hasn’t experienced dizziness after getting up out of a chair? Or how about tripping over something and losing balance? No one goes through life without doing that one. None of those things are the ones that scare you. It’s the obscure problem that is more rare and you can never say, “that’s me,” unless you actually have that problem. That’s what makes you hang your head and say, “Shit… I can’t rule it out after all.” The real kicker is that you find out that being 30 does not necessarily disqualify you from this either. Now you’re worried.
So to your PCP’s office you go. You have no idea whatsoever that this is the first of many trips to that paper covered, beige table that you quickly learn to hate. Let’s face it folks, those things are not comfortable; not in the least bit. Your PCP comes into the room in my case I’ll be singing next to the same guy in two days at choir rehearsal at church and gets a slightly worried face when he examines you. Not only is your arm shaking, but it’s much weaker than the other arm. He gives a prescription for a low dose of Propranalol and orders blood work and an MRI of your neck. He also has his office people make an appointment with a neurologist for you. They can’t get one for you for at least two months. Right now, your doctor is calling this a “resting tremor.” The PCP wants to see you back in two weeks.
A few days later, you have your MRI and a few days after that the PCP’s office calls you to say that they’re sending you to not only the neurologist, but a neurosurgeon as well. Apparently, you have two bulging discs. Your blood work also shows that you’re slightly deficient in Folic Acid and Vitamin B12. You pick up another prescription for Folic Acid. You’re happy though, you have a pretty solid explanation for the tremor. A little rehab and you should be good. You’re ready to go back to the PCP’s office to hear the official good news. No more worrying about that silly little thing that you read on Web MD. As a side note, I would say to avoid Web MD at all costs. It never does any good for you to dwell on this stuff. I learned the hard way.
So you head back to the PCP’s office in a much better mood than you were in the first time. That beige table with the thin, white paper doesn’t feel so hard this time. There’s a cause that can be easily corrected. Bulging discs cause pinched nerves which can cause tremors. Your PCP’s first statement breaks your bubble like a tank firing a round into a glass building. The discs are bulging to the left. Your tremors are in your right arm. They explain your occasional left shoulder pain nicely. But your right arm remains a mystery. The PCP calls you his “interesting case.” You don’t want to be his interesting case, thank you very much and good day. Someone else can have that fine honor. How about a rain check on that, huh?
Such foolery does you no good. This is happening, it’s for real, and there’s nothing you can do. There’s an unknown problem of unknown origin. All the reading your doctor has done hasn’t given him any kind of answers. He now orders a nerve conduction study with EMG and an MRI of your brain. Off to the neurosurgeon’s office you go, but the neurosurgeon tells you that he can help you with the bulging discs if they ever get too painful, but as for your tremors, you’ll have to see the neurologist. There’s nothing he can do for that.
You get into the neurologist’s office, and once again you sit on one of those damned tables again. It’s even harder this time. The MRI of the brain showed that there was a brain, but nothing out of the ordinary. The nerve conduction study and EMG also showed nothing abnormal. According to all the tests, you’re healthy. The problem is being that it’s been three months to this point and the only time your arm stops shaking is when you’re asleep. There’s something else to tell him too. You have been tripping too easily, often over your own feet, you get dizzy when you walk too fast, change direction, bend over, sit down, and stand up. You also have been experiencing a good amount of fatigue. You just can’t pull off the twelve hour shift like you used to.
He checks you out. Moves both of your arms, has you push and pull against his hands and squeeze his fingers. He also has you walk heel to toe, which you can’t do very well, and then he says to close your eyes and stand with your feet together. When did we get in the middle of the ocean, you think as you keep having to step to your side to catch balance. They come back in and tell you that your right arm, the one that shakes, is a lot stiffer than your left. They mention that horrible thing you saw on Web MD but say you’re too young for that. They call it a stress reaction tremor, give you a prescription for an anticolinergic called Artane and we’ll see you in two months. He also has his office make you an appointment to see another neurologist, this one with a subspecialty in movement disorders.
After two months have gone by, you go back to the neurologist. You haven’t seen the movement disorder specialist yet, but the appointment is made for the first of the following month. You ask him what you’re looking at. The neurologist isn’t a bad guy. He has a dry sense of humor, but you get it. Your sense of humor is just as dry as his. The first thing he does is he takes in a sharp, hissing breath and says the word that two months ago he said you’re too young for. And then, as an aside, he says that there’s still a chance that it’s a benign tremor. You know as well as he does that it’s bullshit, but he says it to keep some hope out there.
I see the movement disorder specialist tomorrow morning. My symptoms have gotten worse in the past couple of weeks. I’m a lot stiffer, especially in the mornings. Yesterday in Walmart, I walked through the store leaning heavily on the cart. I didn’t do this because I thought that it was a good idea. I had no choice. It was either that or get one of those motorized carts, and people look with contempt at a thirty-year-old using one of those, without stopping to think that someone my age wouldn’t even think of using one unless it was absolutely needed.