I suppose I should start this post with a disclaimer:
The symptoms I am about to describe may or may not have anything to do with Parkinson's disease. It is called a boutique disease for a reason as everyone gets a slightly different version. I'm just telling you what I observed. I knew something was going on, just not what. Since then, it has been confirmed that I have Parkinson's but you'll have to wait for a later post for me to describe how. Okay, that should keep the lawyers happy - on to my hypochondria err, symptoms!
Looking back these four years since I first noticed any symptoms is interesting, well, to me. The symptoms below plus a few others have been happening at different times or not at all anymore. In other words, some seem to come and go while others are just worse some days than others. It was almost like, my body was at a tipping point regarding dopamine supplies and started struggling as to what to do. I perceived this in different ways through pain, dizziness, tremors, etc. Pure speculation on my part but I do find stuff like this interesting. Ya, I know, total geek, but.... interesting.
- Sleep: Ah, if I only knew what I was in for I would never have complained about this being a problem back then. See, as I write this post, I am on my fourth day in a row of 3 hrs sleep or less. I plan on writing a future blog about sleep and how much it use to mean to me. If only I had more time in the day (or night) to write, hmmm.... Back to the symptoms. I could fall asleep, but I was up every night by 1 am and usually up for 2-3 hours until I drifted off just before the alarm buzzed. My sleep would then cycle through the month; couldn't get to sleep then couldn't stay asleep. Then both which basically meant up all night. Then a few days of restful sleep before the cycle started all over again. Interesting video link here on Parkinson's sleep disturbances and some tips.
- Aches and Dystonia: Just general soreness mostly in my arms but the weird one was every morning it felt like I twisted my ankle. I did nothing at night but sleep (or flop around, see above) but it hurt bad until I got up and walked it off. Went to bed - no pain. Woke up - pain. Weird. Thankfully that went away after a few months. Some days my left arm felt like it weighed 100 lbs and others days like that dull ache you get after you get a shot. My fingers sometimes are stiff and hard to bend. When I try to bend them it's like the tendons in my hand aren’t long enough. I can force them straight and force them closed but moving them without help is tough.
- Smell: I mentioned this in a previous post, but it’s hard to prove that you really can’t smell. So when people would ask what smells funny I would have to fake it. Certain smells get through like gasoline or cigarettes, but it has to be a strong odor. Then there are the phantom smells that hit you. One smell in particular that hung around was kind of a sweet antiseptic band-aid smell. Another would be like a whiff of a garbage dump. Totally weird because no one around me could smell this. It would happen anywhere at any time. My guess is it has something again to do with the lack of dopamine and transporting the correct signals back to the brain. Maybe the brain does its best to match up what information it is getting and just gets confused. Sorry, didn't mean to get all technical on you there. Not smelling can be helpful, though. I had to remove a dead woodchuck from under the house. I'm guessing by the reaction of my family, as they beat feet to get inside the house that the smell was gag worthy. It looked a little rough but, I didn't smell a thing. Here is a link on loss of ability to smell.
- Tremors: Wasn't that the name of a bad horror film in the 1990's? Once again, if I knew about shaking then what I know now, I wouldn't have complained. But, it was new back then and definitely something different. Micro-tremors would come and go always in my left arm or hand. I had a few tremors in my legs at night too. I also started getting them on my face. My lip would tremble adding to my already slightly slurred speech. Plus, the muscle below my eye would twitch along with my eyelids. I could feel it twitch but luckily, people always couldn't see it. Makes you rather self-conscious, though. I would always wonder what people thought of the guy standing in line next to them twitching like he was about to explode.
- Instability: Out of nowhere, I would get these sudden bouts of dizziness. I'd have to stand very still until it passed or sometimes even grab onto something. Just another symptom that came and went as my body tried to figure out how to deal with the lack of dopamine. Don't miss that dizzy feeling though; glad it was short lived.
So here I am with a list of things wrong with me and what do I do next? Call a Doctor? Of course not! Research them on my own so I can tell the Doc what's wrong is more my style. So after some thorough digging everything led me to the same path:
Parkinson’s Disease
At first the words didn’t seem much to me, "hey it's the same thing Michael J Fox and Muhammad Ali have. They shake, but they are still okay, right?" So I called the Doctor to make an appointment.
I’ll divert here for a brief second. This is a much larger decision than I initially gave it credit for. Time basically freezes from that point on regarding what you have to declare health wise, especially to insurance companies. Once you have a diagnosis you are forever labeled in the system. Four years later, looking back, it hasn't really hurt me but I've neither changed insurance companies nor applied for any type of life or disability insurance. Who thinks to buy disability insurance when they are healthy? We will see how this plays out.
So there I am, sitting at the Doctors office, and in walks my GP, Dr. Mitchell. The customary greeting followed by the question: “what brings you here today?” I just blurted it out: “I think I have Parkinson’s.” Dr. Mitchell stared over his glasses at me and stated “aren’t you a little young for that?” and the exam began. I demonstrated the way I discovered I could trigger my hand to tremor every time. Hold your arm straight out in front of your body and slowly twist your wrist. Instead of a nice slow rotation, your hand jumps from position to position with fingers vibrating madly. Turns out this test is called Cogwheel Rigidity and points towards Parkinson’s. He asked me to tap my thumb to my finger, not a problem on my right hand at any speed, but I could barely do more than one in a row on my left. He asked me to reach out and touch his finger then touch my nose. When my hand rose, my finger was trembling so bad I almost missed touching his but once I got started I was okay. We also did this test where I had to turn my hand back and forth in the palm of my other hand in rapid succession. No problems here. He wrote some stuff down and recommended I see a neurologist. Wished me luck and was off. I don't know what about his reaction triggered it for me, but I thought, “he thinks I have Parkinson's too.”
I left, sat in my car in the parking lot and read the paperwork they gave me while exiting the office and it was confirmed, Possible Parkinson's written on the sheet. They thought I had it too. I immediately headed to the one person I needed to see, my wife Rachel. Now remember, going into the Doctor’s office, I already thought I had Parkinson’s. But as soon as the words came out of my mouth in front of her, I broke down and sobbed. The first time I cried over this disease and I’m determined to make it the only time.
Up Next: a three-week wait and to tell or not to tell was the question
