The November Chronicles

When she returned, my Neurologist asked me for the name of the place where I worked.  I had thought we were done with the tests but played along and told her.  (It's one of many noted places of medically-focused learning on the East Coast., and the department I'm in specifically works in the field of brain research.)

“So you work with doctors who study brain disorders and what not?” she asked, while making total eye contact.  The air in the room suddenly felt more serious.  I knew this air.  I knew this moment.

“Right”, I responded.  “We study and test for advanced age-related neurological issues, developmental disorders in children, behavioral and biological brain development” came from my mouth while my OWN brain was going through the hundreds of illnesses and sicknesses and treatable diseases I’d been reading on various emails, wondering which one she’d be assigning to my arm … and, apparently, to my foot.

“I take it”, she continued, “that you’ve done a fair amount of research then – especially after your appointment with your general practitioner.”  “Ohhhh yeah”, I laughed.  “Until he said it, I’d never even heard of ‘benign essential tremor’ and to think that literally millions of people have it was strangely comforting.”  I lightened up.  This felt better.  She had news to deliver but it ... it felt alright somehow.

“Uh huh” she said.  “The thing is that sometimes a dominant symptom is diagnosed, rather than finding the real primary cause of that symptom.  It happens pretty frequently actually. Like – when you were diagnosed with migraines, for instance.  Sure you had headaches but it was after you walked us through the frequency and the type of pain and location … that’s when we were able to say that your headaches were, in fact, migraines.  They are headaches that are also migraines.  Someone can have just a headache and not have it be a migraine … but you can’t have a migraine without it also being a headache.”

I nodded, took a breath and continued to listen.

“You DO have benign essential tremor, just as your GP stated.  And that, combined with your difficulty in writing, slowly traveling tremor, description of how the interior of your arm feels when it shakes, lack of mobility in your right wrist, your walking gait … I’m nearly certain you have Parkinson’s disease.”

I exhaled slowly.  “Yeaaaaah, I’d researched that, too.”  Immediately my eyes welled up and my throat tightened.

She handed me a tissue and did her best to keep me focused.  “We’re gonna take some blood today and I want you to sign up for a urinalysis.  We’ll check for high concentrates of copper, which can cause tremors – I wanna rule that possibility out.  Also, as soon as possible I want you to have an MRI to rule out any tumour or stroke-type events.  Continue to take your Inderal – no sense in you getting migraines – but I’m prescribing Carbidopa/Levodopa that, over the next 6 weeks, I want you to slowly increase until you’re taking 3 tablets a day.  And I want to see you again before the end of October.”

And I’m sure she said other things, too … but my brain had left the building and was floating away.

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I am forty three years old and I have Parkinson's Disease.
 
No family history.  Not even EXTENDED family.

How to tell The Awesome Boyfriend.

My God - I’m only forty three years old.

How to tell co-workers.

Seriously ... forty three.  FORTY THREE.

Being one more damn thing for The Awesome Boyfriend to worry about.  One more bother.  One more burden.

How to face that look that one gets when others know bad news about them.

How to tell family back on the West Coast.

Forty fucking three years old.

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While in the parking lot, I called The Awesome Boyfriend and apologized for it … for the diagnosis.  After the numbness wore off a little, he asked “are you going back to work or can I meet you at home?”  “Hell yes I’m going to work” I blurted out.  “I’m NOT sitting at home and wallowing.”

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A lot has happened since that day.  I finished the blood work.  I did the urinalysis (more on that later). I did the MRI (more about that later, too).  I told my family.  I told my coworkers.  And, because I work where I work, I was given the contact info of a Neurologist who specializes in Parkinson’s research and was able to get his opinion about the diagnosis, treatment options, and a LOT of additional information.

But the real bummer is that the Carbidopa/Levodopa really … honestly … truthfully … seemed to make a difference, even after just a few days of taking it.  Which sucked.  A lot.  A whole lot.  Because since that worked, it pretty much confirmed that she'd found the right primary cause of my stupid little arm shake, which was no longer funny at all.

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I am forty three years old and I have Parkinson's Disease.  It probably won't kill me and I probably won't ever see a cure.  The best I can hope for is symptom management.  There will come a time when I will look back in longing when I had "just" the arm tremor.  This - today - is the best I will ever be.  Eventual decline is as inevitable as the leaves falling in November - it's both strangely beautiful and sad.

I’ll write about this as things change – which may be often.  Read about it or don’t - we all have our own sack of crap to handle and mine is no heavier than yours.

Just,  for my own sake, don't treat me differently if at all possible.  I'm not defined by this any more than I'm defined by my job or my height or my shoe size.  Yes, I’m forty three years old and yes, I have Parkinson’s Disease … but I am – I will always be – more than that.

OK? Got it?