During these three weeks, I was on SUPER observation duty. Every flinch would be examined and documented and triangulated to see if it fit the mold of Parkinson’s. Yeah, I drove myself a bit nuts, but things seemed to be changing, daily. I called it symptom roulette. Every day you woke up and you would have a different symptom from the day before. One day your arm hurt, another you'd have tremors. You might be dizzy or you could just be achy. But through it all, you woke up every night for a couple hours because Lord knows you needed MORE time to wonder what's going on inside your head. Looking back, all the different symptoms had to have something to do with being on the edge of just enough dopamine. Here, four years into this, I have good days and bad days, but it's not the randomness like in the beginning. Don't get me wrong, the symptoms I have now are worse, just steadier and more predictable. Not sure if that's a good thing or not.
During that three week wait for the neuro appointment, I had my annual Managers trip to Chicago. A trip to Chicago in January, I know, I know, it sounds nicer than it really is. Basically, you're in a beautiful downtown Chicago hotel and see nothing but the inside of a conference room for the duration. I do leave with some good information and a bit more energized so it's worth it. As I described in an earlier post though, stress brings out the symptoms and I would be neck deep in it for five days!
Backing up for a moment. At this point, with no diagnosis and very few outward symptoms, I chose not to tell my employer of what was happening. I have since but who to tell, when and how I did it will be the topic of a future post. I know this is a hot button for many so leave a comment if you would like to discuss it sooner and I'll get back to you. Or, you can read more about the topic here. So I'm in Chicago and have to be what I call "on" from 7:30 am till 8 pm for nearly five days straight. Usually these conferences are just three days, but with my luck, they needed us for an extra two this year. Oh boy...
Every day was another spin on symptom roulette, but I was able to keep it together for the most part. During one lecture the muscles in my forearm cramped. I don’t mean just sore, it felt like the muscles were trying to twist their way out of my arm. I stuck my arm under the table and after five minutes of intense rubbing it went away. That evening, I was playing a card game, called horses (ask and I'll tell you about it), with some other Managers. I won a couple of hands and had a pile of quarters that needed to go back into a plastic cup so I could carry them. I was able to slide the quarters into my left hand but couldn’t manipulate my fingers correctly to get them to fall into the cup. A bunch went on the floor. I felt the Head of Engineering standing behind me staring. My only hope was that he thought I was drunk even though hadn't had anything that night. Weird position to be in. Hoping someone thinks you're inebriated to hide a possible neurological disorder. How messed up is that! The only other noticeable symptom I had on the trip was stuttering. Under stress I was having more and more trouble getting the words to form correctly. VERY frustrating.
A few nights after I got back from Chicago, I took all the kids out for dinner and a what happened next was eerie. Keep in mind I have not shared my problems with anyone except my wife and she swore not to tell anyone. So, we were sitting at a restaurant and my daughter noticed her brother's eye was twitching. Both my daughter and I launched into his excessive caffeine consumption as the probable cause. My son looked me in the eye and asked if anyone in the family had Parkinson’s. I was stunned. I almost lost it, but calmly asked why he would ask such a question. Before he could really answer, my daughter jumped into describing how bad Parkinson’s is and that he wanted no part of it. I lied – a bit – and told them how there are great meds for Parkinson’s out there and not to worry because I was sure it was the caffeine. It was really a strange experience and one I probably handled poorly, but I never expected that question, that night. Especially so soon with all that was going on inside my head at the time.
It’s now the weekend before my appointment with the Neurologist and I’m a bit nervous. Not because of what he might say but what he might not. I’ve come to grips in my own mind that I have Parkinson’s. If he says I don’t, BONUS, I get a ‘get out of jail free card.’ My fear is however that he doesn’t know what it is and I am subjected to two years of testing while they try and figure it out. Don’t get me wrong. I don’t WANT Parkinson’s but knowing what you have is easier to deal with than not knowing. And, being the eternal optimist, I believe that if I do have Parkinson’s it will be on the mild side and I will be able to deal with the changes easily. We’ll see. Three days to D-day – (Diagnosis day).
Sunday, January 30 (D-1). My face feels heavy today, that’s the best way I can describe it. For year's my wife has called me ‘the Terminator’ because of my lack of emotion. I attributed most of it to being German however I wonder how much of it might be Parkinson’s. Funny how I attribute things I feel to an incurable disease that I haven’t even been diagnosed with yet. But still I wonder if the Parkinson mask so frequently talked about has been a problem longer than I have known. By the way, great link for describing this here.
I think about how, when and if I will tell people once we figure out just what exactly is wrong. The kids will be tough; I don’t think I would tell my youngest daughter right away and probably not for a couple years if I can help it. My parents and my sisters will be easier. I just don't want anyone feeling sorry for me. That would bother me more. Work is another tough one. It could have drawbacks but I guess it really depends on how bad my symptoms get. If I don’t shake and stutter there is no point in telling anyone yet because it's not affecting anything.
I feel really bad for my wife, Rachel. I know she didn’t sign up for this and she’s been nothing but supportive. I hope and pray that if this is Parkinson’s it’s the milder, slower progressing kind. I'm only 46 but, we have many plans for after retirement and taking care of me wasn’t one of them. Mr. Optimism keeps thinking that in the 10 years I've got before I assume it "gets bad" there will be a major breakthrough. I can only pray.
Up next: D-day - I hope
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