This blog entry is not a feel-good story. It's the story of how a neurologist informed me that I had been awarded a free, lifetime membership to the Parkinson's club. I would pay any price, down to my last dime, to cancel my free pass.
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In February of 2012, I confessed to my wife that I was seeing my doctor the next day due to my unusual symptoms, such as stiffness in my right arm and tremors on my right side, usually during extreme stress. I also told her that on Web MD, my symptoms seemed to be symptoms of Parkinson's disease. She tried to put on a good face, but she was clearly horrified. I told her it was probably nothing.
I was lying to myself. And to Kathy. It was not "nothing". It was something. I just hoped it wasn't fatal.
I saw my doctor the next morning, and told him about the symptoms I had been experiencing. He did some rudimentary tests that I frankly could have done with the help of my dog, making me wonder why I wasted a co-pay on this appointment. However, when he was done, he became very quiet, and had a look of concern on his face. The co-pay wasn't a waste after all. He finally spoke, with some alarm in his voice, and told me to get an MRI immediately, and recommended a neurologist to see as soon as possible. In the next breath, he said I needed to be tested for Parkinson's disease, but he also needed to rule out something worse, like Multiple Sclerosis, Lou Gehrig's disease, or a brain tumor.
Awesome! Now I'm completely focused on my death. At least I have great life insurance. Hey, my son can go to Harvard with no student loans!
My MRI was scheduled for the following week, but my appointment with the neurologist was almost FIVE WEEKS later. I was hopeful that seeing the neurologist would be completely unnecessary.
I had never had an occasion where I needed an MRI, so I didn't know what to expect. The MRI technician could not have been nicer, but warned me that if I was claustrophobic I might have an issue. Of course I told her I wasn't (I had no idea). I stretched out on the table and put some headphones on (they found some Miles Davis to play), and then in matter of seconds I was completely surrounded by this cylindrical "thing" which was supposed to tell me if I was being given advanced notice of my death.
By the way, I seem to be slightly claustrophobic, because the MRI tube freaked me out. Who knew?
The next day, the assistant for my doctor gave me the "all clear", meaning I didn't face imminent death. I was thrilled, obviously. But then I was overwhelmed by this thought...what is wrong with me then?? I was still having the same symptoms, and they were not improving. Just as I was being overwhelmed, the assistant called me back to say that my doctor wants me to keep the appointment with the neurologist.
Me: "But I got the all clear". Assistant: "He still wants you to go", with a tone that suggested it was pointless to argue. Me: "If you say so". My brain: "WTF"?
It was still February. The appointment was on March 21st!!
Finally, March 21st arrives. In a bit of foreshadowing, it was a gloomy, drizzly day. Kathy and I went back to the neurologist's office pretty quickly, and we sat down in front of an old, unimpressive wooden desk reminiscent of a teacher's desk in an old, moldy New York City school. The only thing missing was a Nuclear Fallout Shelter sign. The neurologist (I will protect his identity) sat down at the desk and I thought to myself, "this friggin' guy is a neurologist??' He obviously doesn't spend his money on clothes or a comb. But I checked him out beforehand, and he was definitely reputable.
He asked me lots of questions about my symptoms, and then performed a series of tests. Most of that hour is a blur so my memory is actually foggy, but he did tests on my arm strength and leg strength, muscle stiffness, the use of my fingers on both hands, and my reflexes. The last thing he had me do was to simply walk down the hall. He left so I could get dressed, and came back a few minutes later. He closed the door, looked at me, and said:
"You have Parkinson's disease".
I think I just got hit in the face with a Louisville Slugger (I know, I turn everything into a baseball metaphor). I looked at Kathy, who was white as a sheet, but was surprisingly composed given the news she just heard.
Well, I'm a straightforward kind of guy, so I appreciate that he didn't bother with small talk. Everybody knows I hate flowery, sugar-coated crap...just give it to me straight. But I had one question, "what about the MRI? It came back clean".
"Parkinson's disease doesn't show up on an MRI. It was to rule out the fatal stuff".
Oh! I'm not gonna die. Swell! I'll just slowly deteriorate until I'm useless. Then I seriously thought, "maybe I'll light the Olympic flame like Muhammad Ali", the vision of the Champ shaking the torch nearly uncontrollably in 1996 going through my head.
He said the good news was that it was actually better to get it younger because you can hold off the worst symptoms longer. I zoned out after that...the only words I remember after that were "Michael J. Fox". I guess he was trying to lift my spirits. I was just trying not to cry.
What the hell do I do now??
Lifetime membership. More like a life sentence...or is it?
Job 36:15
Monday, August 4, 2014
Tuesday, April 15, 2014
It Seems So Obvious Now, Part 2
I just checked, and the last time I wrote an entry was on October 13th. Sorry, but that's way too long. Perhaps I had nothing to say. Perhaps I lost my nerve and didn't want to share. The truth is probably the latter. Well, I have regained my nerve and I want to share a few things. Actually, I feel like I need to.
All through the summer of 2011, I had this inexplicable pain in my right elbow and shoulder. I was wondering if I hurt my arm playing catch with my son. Then I remembered that he wasn't playing in a league that summer, so that wasn't it. I thought maybe I hurt it lifting weights. Then I remembered that I wasn't exactly living in the gym at the time, so that wasn't it. I had a full physical exam, and everything checked out fine.
So what was it? All I could do was shrug my shoulders because I had no clue. But shrugging my shoulders hurt, so I couldn't do that either. I just knew the following: 1) I was in constant pain. 2) I had no clue why. 3) I often smelled like Ben Gay! Nice!
By the fall, the pain had subsided...somewhat, but my typing skills deteriorated more (it's all relative...I typed 70+ wpm at one time), and my right pinky and thumb started acting on their own, as if they were no longer connected to me. In December, I was in need of a cup of coffee, so I walked to the kitchen at work to get a cup, but before I got there I just stopped dead in my tracks because I noticed something extremely startling...
My right arm wouldn't move! It just hung there, stiff as a board.
Surely you've noticed that when most people walk, they swing both arms. Well, I was swinging one arm. It must have looked ridiculous, and I wondered for weeks how long I had been walking like that without noticing. Of course, I also wondered how many other people noticed and never said anything, at least to me. So you're wondering what I did next. Did I tell my wife? Did I see a doctor? Did I confide in a close friend? The answer to all of those questions is no. Did you expect something else? This is what men have been doing for centuries, hiding potentially major medical issues from everybody and living in denial.
So...after pondering this problem, I found one rather obvious solution, three words that I would scream in my head multiple times a day...
SWING YOUR ARM!!!
There. Problem solved.
Except it wasn't. It just got worse.
Then, during a particularly stressful event, an earthquake happened. In my right leg! NOOOOOOOOOOOOOOOO!
WTF?? So I did what many of us do when we have unusual symptoms. Visited webmd.com. Looked up some symptoms. Found some bad things under the Parkinson's disease page, bad things that applied to me...
All through the summer of 2011, I had this inexplicable pain in my right elbow and shoulder. I was wondering if I hurt my arm playing catch with my son. Then I remembered that he wasn't playing in a league that summer, so that wasn't it. I thought maybe I hurt it lifting weights. Then I remembered that I wasn't exactly living in the gym at the time, so that wasn't it. I had a full physical exam, and everything checked out fine.
So what was it? All I could do was shrug my shoulders because I had no clue. But shrugging my shoulders hurt, so I couldn't do that either. I just knew the following: 1) I was in constant pain. 2) I had no clue why. 3) I often smelled like Ben Gay! Nice!
By the fall, the pain had subsided...somewhat, but my typing skills deteriorated more (it's all relative...I typed 70+ wpm at one time), and my right pinky and thumb started acting on their own, as if they were no longer connected to me. In December, I was in need of a cup of coffee, so I walked to the kitchen at work to get a cup, but before I got there I just stopped dead in my tracks because I noticed something extremely startling...
My right arm wouldn't move! It just hung there, stiff as a board.
Surely you've noticed that when most people walk, they swing both arms. Well, I was swinging one arm. It must have looked ridiculous, and I wondered for weeks how long I had been walking like that without noticing. Of course, I also wondered how many other people noticed and never said anything, at least to me. So you're wondering what I did next. Did I tell my wife? Did I see a doctor? Did I confide in a close friend? The answer to all of those questions is no. Did you expect something else? This is what men have been doing for centuries, hiding potentially major medical issues from everybody and living in denial.
So...after pondering this problem, I found one rather obvious solution, three words that I would scream in my head multiple times a day...
SWING YOUR ARM!!!
There. Problem solved.
Except it wasn't. It just got worse.
Then, during a particularly stressful event, an earthquake happened. In my right leg! NOOOOOOOOOOOOOOOO!
WTF?? So I did what many of us do when we have unusual symptoms. Visited webmd.com. Looked up some symptoms. Found some bad things under the Parkinson's disease page, bad things that applied to me...
- Initial symptoms were just on one side of my body
- Tremor in one hand (right pinky and thumb)
- Writing changes (my wife noticed my once neat handwriting was illegible and tiny)
- Tremor in right leg
- Anxiety (had it for a while the year before)
- My quick, heavy walk slowed considerably
Shall I go on? This sucks. But it will get better. There is a reason for everything.
I will write again very soon.
Isaiah 25:8
Sunday, October 13, 2013
It is Not a Death Sentence!
I don't often think of my own death (who really wants to), but when I do, I often think of a sentence I have uttered a thousand times: "Nobody gets out of life alive". It's true, isn't it? I, like all of you reading this, will die someday, hopefully of old age, while I'm sleeping. However, there's one thing I am not going to die of...
Parkinson's disease.
Why? Because it's NOT a fatal disease, that's why. If my tone sounds a bit like I'm annoyed, or a little angry, that's because I am. I have been amazed at the amount of articles that say "so and so died today after a long battle with Parkinson's disease", implying or directly saying that this person died of Parkinson's.
If you conduct a Google search on "Is Parkinson's fatal?", you come up with some interesting stuff, some of which is benign, and some of which is rather negative. None of them say the disease is fatal, and neither does my neurologist!
From http://www.pdf.org:
The progression of Parkinson’s disease varies among different individuals. Parkinson's is chronic and slowly progressive, meaning that symptoms continue and worsen over a period of years. Parkinson's is not considered a fatal disease. And the way that it progresses it different for everyone:
From https://www.michaeljfox.org, one of the best sites out there:
Most doctors say that Parkinson’s disease itself is not fatal. You die with Parkinson's disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson’s patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patient's age, overall health and disease stage.
Then there's some website called http://wiki.answers.com, which responds to the question this way:
no, but at a certain stage in the disease, the quality of life of the person with the disease is almost nothing.
Really? That's it? They might as well have written in the next sentence, "Find the nearest bridge and jump, you loser!"
I'll give you a wiki answer. Screw you!
Here is a perfect example of what I'm talking about. Dave Jennings was a terrific punter for both the New York Giants and Jets from 1974 - 1987 (I am a Giants fan), and was a Jets broadcaster for two decades, and he recently died while suffering from Parkinson's disease. I looked through his various obituaries, and nearly all of them implied or said that he died of Parkinson's. This one, from www.sbnation.com, drove me crazy:
The former Giants punter and long-time broadcaster lost his battle with Parkinson's disease on Wednesday. He was 61 years old.
Sigh. That was the only response I could muster because it was so ridiculous.
These various headlines made me have to re-explain to my wife that this disease is not fatal, and it is prompting me to explain it to all of you. I will probably have to do this for the rest of my life. Oh well. I could be worse, I suppose. I could have a disease that actually IS fatal.
Thanks for reading my rant. I needed to vent. Coming next: It Seems So Obvious Now, Part 2.
Matthew 19:26
Parkinson's disease.
Why? Because it's NOT a fatal disease, that's why. If my tone sounds a bit like I'm annoyed, or a little angry, that's because I am. I have been amazed at the amount of articles that say "so and so died today after a long battle with Parkinson's disease", implying or directly saying that this person died of Parkinson's.
If you conduct a Google search on "Is Parkinson's fatal?", you come up with some interesting stuff, some of which is benign, and some of which is rather negative. None of them say the disease is fatal, and neither does my neurologist!
From http://www.pdf.org:
The progression of Parkinson’s disease varies among different individuals. Parkinson's is chronic and slowly progressive, meaning that symptoms continue and worsen over a period of years. Parkinson's is not considered a fatal disease. And the way that it progresses it different for everyone:
From https://www.michaeljfox.org, one of the best sites out there:
Most doctors say that Parkinson’s disease itself is not fatal. You die with Parkinson's disease, not from it. However, as symptoms worsen they can cause incidents that result in death. For example, in advanced cases, difficulty swallowing can cause Parkinson’s patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. The seriousness of these incidents depends greatly on the patient's age, overall health and disease stage.
Then there's some website called http://wiki.answers.com, which responds to the question this way:
no, but at a certain stage in the disease, the quality of life of the person with the disease is almost nothing.
Really? That's it? They might as well have written in the next sentence, "Find the nearest bridge and jump, you loser!"
I'll give you a wiki answer. Screw you!
Here is a perfect example of what I'm talking about. Dave Jennings was a terrific punter for both the New York Giants and Jets from 1974 - 1987 (I am a Giants fan), and was a Jets broadcaster for two decades, and he recently died while suffering from Parkinson's disease. I looked through his various obituaries, and nearly all of them implied or said that he died of Parkinson's. This one, from www.sbnation.com, drove me crazy:
The former Giants punter and long-time broadcaster lost his battle with Parkinson's disease on Wednesday. He was 61 years old.
Sigh. That was the only response I could muster because it was so ridiculous.
These various headlines made me have to re-explain to my wife that this disease is not fatal, and it is prompting me to explain it to all of you. I will probably have to do this for the rest of my life. Oh well. I could be worse, I suppose. I could have a disease that actually IS fatal.
Thanks for reading my rant. I needed to vent. Coming next: It Seems So Obvious Now, Part 2.
Matthew 19:26
Wednesday, October 2, 2013
It Seems So Obvious Now
I feel compelled to write about my experience with Parkinson's disease, which is still relatively new to me. Given the fact that I have not previously had any desire to share my life in cyberspace, I have concluded that God is prodding me to write this. I have no other logical answer. I also know that some of you will judge me for telling my story publicly. Judge away...perhaps this will eventually help you also.
The first symptom happened in my Forest Hills, NY apartment in 2001. I was watching the Yankees on my couch, and my right thumb started doing its own thing. It started as a small spasm for a few seconds, and then it would stop. The spasm became rather violent, and then magically disappeared...for a while. Months later, the spasm came back, and persisted off and on for about ten years.
The first symptom happened in my Forest Hills, NY apartment in 2001. I was watching the Yankees on my couch, and my right thumb started doing its own thing. It started as a small spasm for a few seconds, and then it would stop. The spasm became rather violent, and then magically disappeared...for a while. Months later, the spasm came back, and persisted off and on for about ten years.
Other unusual things started happening. Since high school I typed 70+ words per minute. In 2009, I started feeling myself struggle at the keyboard...of course, my "struggle" was 50+ wpm. But still, it was unlike me. I chalked it up to age and stress. I was a Human Resources Director and I dealt with a very high-maintenance employee base. Their default setting was pissed off, and that was on a good day.
In 2010, I felt this unusual cramping in my right hand while using a mouse. On days when I used my laptop, I noticed that it was much easier to use a mouse with my left hand. Some weeks later, my right hand actually had to think about what it needed to do, something that was as automatic as breathing for 30 years.
That same year, I would be overcome with these bizarre panic attacks, almost always when I was alone...I made sure of that. I told my primary care doctor, and he gave me a prescription that made them disappear...for a while. After you take a drug that you no longer need, it turns on you, and that's what happened to me, so I told my doctor and stopped the prescription immediately. I have not had a panic attack since. Still, I wondered why...
Then, on February 8, 2011, my HR position was eliminated. My life just became more interesting. My physical condition did too. And my thumb.
Until next time...
Philippians 4:13
That same year, I would be overcome with these bizarre panic attacks, almost always when I was alone...I made sure of that. I told my primary care doctor, and he gave me a prescription that made them disappear...for a while. After you take a drug that you no longer need, it turns on you, and that's what happened to me, so I told my doctor and stopped the prescription immediately. I have not had a panic attack since. Still, I wondered why...
Then, on February 8, 2011, my HR position was eliminated. My life just became more interesting. My physical condition did too. And my thumb.
Until next time...
Philippians 4:13
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