Superbowl meltdown plus the first of many

Okay, I just re-read the last post and I may have missed the point I was trying to make.  For those of you just going through the diagnosis phase or those that know someone that is the anxiety of not knowing what's wrong can be worse than finding out. There are a whole host of diseases that cause Parkinson's like symptoms and some of them are pretty nasty.  There is no definitive test to say you have Parkinson's so even being told you have it is still a guess until they can see how you progress.  At this early point in the diagnosis phase, the neurologist will tell you that you have Parkinsonism symptoms.  Basically, you have something that makes you look like you have Parkinson's.  Here a partial list I found of things, besides Parkinson's, that can cause these symptoms:

• AIDS 
• Corticobasal degeneration
• Creutzfeldt-Jakob disease
• Dementia pugilistica or "boxer's dementia"
• Diffuse Lewy body disease
• Drug-induced parkinsonism 
• Encephalitis lethargica
• Essential tremor
• Genetics
• Multiple system atrophy
• Pantothenate kinase-associated neurodegeneration
• Parkinson plus syndrome
• Progressive supranuclear palsy
• Toxicity due to substances such as carbon monoxide, carbon disulfide, manganese, paraquat, mercury, hexane, rotenone, and toluene (inhalant abuse: "huffing")
• Vascular parkinsonism
• Wilson's disease
• Paraneoplastic syndrome

Yeah, that's what I thought when I first read through this list too.  If you are anything like me, you'll painstakingly go through each symptom for every disease listed and crosscheck against your own list.  Yes, self-diagnosis will drive you crazy.  I don't recommend it because it's like going to web MD and typing headache.  You either have a sinus infection or a tumor. That said, you know something's wrong, you don't know what and this list is in front of you.  Knowing that it could be months or years before they figure it out isn't helping. There is the DATScan test which does narrow the diagnosis down to a few possible diseases, but you still have to wait to see the progression. Bottom line, it's a waiting game no matter what you end with.
   I promised you a meltdown in the title so here goes.  It's Superbowl Sunday and as the day progresses, I feel worse and worse.  Every symptom is peaking at once including, for the first time, I think, my blood pressure.  It made enjoying the game impossible. Major tremors, pain in the muscles, stuttering, dizzy and as I mentioned it felt like my blood pressure was pounding,   By 9 pm I had about enough and actually got in the car drove to the only place I knew open that late that might have a blood pressure monitor, Wegman’s Supermarket.  I DO NOT recommend anyone that ever thinks their blood pressure is spiking or for that matter have a host of other symptoms climb in a car and drive anywhere.  I just couldn't take it anymore and had to get out.  Yes, I should have asked for help but, if you know me at all, that's not my specialty.  Everything in my body seemed to be against me or at the least, out acting on its own and not helping me.  I may never know if my theory is true but I'm still leaning towards your body is reacting to getting hit with lower levels of dopamine.  It doesn't know how to handle it which causes some strange symptoms.  I'm not a Doctor and don't pretend to play one on the internet, but something is causing these problems.   Well, after all that, bad news, as the pharmacy was locked up and I couldn't find out what my BP was.  By morning, though, I was feeling better, but it would have been nice to know if I was right and my BP was high.  I know I was told Parkinson's isn't supposed to affect things like blood pressure, but something was happening. What the heck could be going on?  It would end up taking a long time to find out. Yes, that's a tease for another, much bigger meltdown later.

February 10, 2011
MRI today of my head and neck.  Looking back it was the first of more than 10 that I have had.  Admittedly, I'm in a research study where I get two different kinds every year plus I had some back issues requiring more imaging.   In the tube I go, as we've got to make sure it's not anything other than Parkinson’s. So not only do I have to come to grips with the fact that I may have a degenerative, incurable brain disease but, now have to worry about tumors, lesions or a host of other things. I did learn something about myself during my first MRI though.  I'm lying face up on the table about to be slid into the machine. As I start to enter, the roof of the tube comes into view.  It's about 2" above my nose.  I felt instant panic, threw my hands up grabbing the machine and said "nope, can't do it."  The technician was nice and asked if I was claustrophobic.  I never had been before so why now?  What to do, I need this test!  I'm tired of waiting for answers, but I knew I wasn't going to be able to go in there.  The solution?  The technician loosely placed a small towel over my face so, if I opened my eyes, all I would see is towel above me like I was in a little tent.  No idea why it worked, but it did.  I've used the same technique ever since.  Of course, like everything with this disease, I have to wait for results from the MRI.  Nothing seems to be in my favor in this whole process.  Another week of waiting.
I still haven’t told anyone what is going on yet.  Well, Rachel told her parents, she felt she had to.  I’m going to wait until I see the Neurologist again because by then, he’ll have the results of the blood tests and MRI.  If they are all clean, then confidence is high that it's Parkinson’s.  Then I’ll have to figure out who to tell and when.  Also, I’m going to transfer to Rochester, Strong Hospital to be precise.  The specialists up there are getting quite a bit of press lately.  It would be good to have them look at me.

It's now Thursday and finally time for Doctor's analysis.  This visit was killing me as the nurse asked question after question.  I know she was just doing her job, but she is not who I came to see.  Enough with the under-card, BRING ON the main event, I want to see the neurologist!  Finally, he arrives. reviews the notes and asks questions about what the nurse wrote.  All the while, I’m dying inside wondering what the results are.  After minutes that felt like hours, he starts to read the report and asks if I brought the disks of my MRI.  Disks??  What disks?  Weren't they supposed to send the information over automatically?  I’m freaking out on the inside now thinking that I’m not going to get results today.  He said he had the notes and wouldn't need the MRI's but would follow-up to make sure he had a copy for the file. So I start thinking again about the list of other possible things it could be except Parkinson's.  Weird how you start to root for the incurable, degenerative disease because other things on the list are worse. "Come on Parkinson's!"   Then he says it, test results were negative. Great, I got my wish, it's the incurable one.

Up next: Time to tell and the new emotion coaster

A three week wait and to tell or not to tell was the question

My appointment with the neurologist was finally scheduled and it was three weeks away.  Three weeks! What the hell!  I know it's supposed to be a slow, progressive disease, but I want to know if I have it NOW.

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