The Greatest Gift, Part 2

I mailed the birthday card on my last day in the office before The Awesome Husband and I left for vacation.  This was intentional ... if I'd done it sooner, I knew I'd be watching the mail carefully (likely TOO carefully) for a possible reply and would, no question, slowly drive myself to wonder if I'd made a mistake by reaching out at all.  I *HAD* let her Christmas card go unanswered for 6 months after all.  It was totally possible that I'd missed my opportunity.

We started by visiting my parents and largely avoiding the July 4th holiday.  The next morning, we drove to Monterey, stowed our bags at our hotel and visited the touristy places.   I'd remembered a specific on-the-wharf place that had amazingly tender squid dishes, and we found it with very little trouble.  The service was great but, sadly, the food was not as good as my memory told me.

We were driving back to the hotel when The Awesome Husband saw a storefront that he wanted to take a photo of.  One of the major dinners we'd enjoy while on vacation was in Yountville at a private outdoor table at a well-known destination for food-lovers - The French Laundry.  The storefront that had been spotted in Monterey was the Del Mar French Laundry and a far cry from where we'd be dining.

The Awesome Husband asked me to pull over and I managed to drive behind the rather dilapidated building and waited while he walked around to the front to take the picture he'd upload to our fellow diners, as a laugh.

I must have been charging my cell phone because when it rang, I didn't have to hunt for it.  I checked at the display to see if I knew the caller and ,while the number was unfamiliar, the area code was not.  I answered it right away, figuring it could be any of the hotels we would be saying at, restaurants we'd be visiting or (possibly) the REAL French Laundry calling to ask about a few special requests I'd made on the sly to surprise The Awesome Husband as a belated birthday gift.

"Hello?" I answered, in my best business voice.  "Hello - Julie?  It's Karin."

My throat tightened and I blurted out "my God it IS Karin!  Happy Birthday, Karin!!!"  In true fashion, she brushed off that it was her birthday and wanted to know - honestly - how I was doing.  She didn't specifically ask about my Parkinson's, but I knew that's what she was asking.  In the flurry of conversation that followed, I learned that her oldest daughter was a teenager, that her parents and siblings were all visiting per her father's request for his 80th birthday and she was hoping we had a spare space in our travel plan to visit them.

It was about this time that The Awesome Husband came walking around the corner, having successfully taken his photo.  Karin and I came up with a plan for a visit Sunday morning, and as we said our goodbyes, the tears started to really flow.

Oh it was just awful.  I would *just* start to get it together, and then I'd think about how much time I had wasted, how much of a coward I'd been, the amount of pain I'd caused ... and I'd be right back to being a big, snotty mess.  For those of a certain age, you may think about watching Mary Tyler Moore on the Dick Van Dyke Show, where she played the part of Laura Petrie.  Laura had a cry that was funny to watch but  heartbreaking to listen to.

And it wasn't just the 6-minute drive back to the hotel.  It was literally HOURS.  We'd be unpacking or researching our next location to visit and I'd feel this wave of guilt and love and forgiveness and ... it would start all over again.  So my hope was that I'd get myself composed over the next day and a half.  It'd be nice if I wasn't a total basket case when we visited.

The Greatest Gift, Part 1

I won't do this justice.  It may take me several efforts before I capture this correctly.  If (ok, WHEN) I decide to try this again, I'll just name it "The Greatest Gift, Rewrite".  Here goes ...

*************************************

I've always made friends easily.  I can make small talk to break the ice with the best of 'em, and from then on, it's mostly a matter of being interested and active listening.  If we don't hit it off, hey - no harm, no foul.

As for friends who really REALLY know me (and whom I'm not related to or married to), that's another matter.  There's Tim, for sure.  We hit it off immediately and have been great friends ever since.  But even that's not going back to my school-age days.  No, school-age friends would number five.  And school-age friends whom I kept in contact with well after graduation would number two.  And school-age friends whom I kept in contact with until I moved East would number one.

And when I write "school-age", the five would be from high school.  And the "post-graduation" two would be the five from high school minus the three who moved away, got married, went to college or whom I just lost touch with.  And those two?  I have known since Kindergarten.  So for REALLY close school-age friends, we're talking about - no exaggeration - a forty-year friendship.

Of those two, one started making really bad choices and decisions and I was finding myself feeling dread when she'd call.  She asked me to do favors for her that I was pretty uncomfortable with and, when things came to a head one day, instead of being sad at the loss of a very long friendship, I found myself feeling ... relief.  The person I had been friends with for so long had changed so dramatically and became someone I would have likely never wanted to know.

But the other one?  I introduced her to her husband, whom I was friends with in a different circle.  I met their firstborn child when she was less than 48 hours old ... and I held their second child at hour 8.  I had my doubts that our friendship wouldn't change with the addition of her having children - and yes, it DID change - but we could still be our goofy selves.  We could still have talks on the phone (something a lot of parents simply cannot achieve due to the constant interruption of a child in need).  She was still interesting and funny and had interests that didn't involve children.

So when it came time for me to move, I spent the days packing or shipping or finding bubble-wrap and crafting, in my head, a way to somehow say I was leaving.  And - I failed * every * single * time*.  It wasn't as though we talked every day or saw each other every week ... but the idea that I wouldn't have the ability to see her at the drop of a hat made me feel ill.  And when the time came?  I chickened out.  I bailed.  I slunk away and when I DID finally call to say "hey - new address!!", I hung up afterwards knowing I had deeply hurt my closest friend and would likely never hear from her again.

When Christmas arrived a few months later, I received a card from her parents ... but not from her.  I sent one, holding out hope that I had simply misread her reaction to my move - and my not telling her face-to-face about the move - but deep down, I knew what she likely was feeling.  After all, 35 plus of friendship had BETTER teach you how to read the other person.

And then life got complicated.  The search for employment took about 11 months longer than I'd expected, the Awesome Boyfriend became the Awesome Live-In Boyfriend, I became employed again but needed to learn a whole new sector (from technology to education), and - just for added drama - there was, of course, my Parkinson's diagnosis.

Each year, without fail, I would get a Christmas card from her parents with a note that would say something like "hope you're doing well", or "haven't heard from you" or "miss your updates" ... but what was I gonna say?  I'd send them a card, too, but .... well how would YOU write "love my job, gonna get married, have Parkinson's, happy new year!"?  So I simply would write my name and send it off, knowing they deserved better.  Knowing she deserved better.  And there I was - in the foreign situation of really not knowing how to break the ice.

Christmas 2012 came around and, out of the blue, I opened a photo card to see the smile I'd known since walking into Mrs. Denzer's Kindergarten classroom.  I stared at the card, studying the familiar ornaments on their tree (knowing she was alright with random decor placement but that such a thing would keep him up at night) and, still in a daze, flipped the card over to see a whole page of text!  Ages and hobbies of children, vacation news, job updates, boards and committees she was on ... not personalized to me but I drank it in, sat back, and ... cried. I still didn't have any way of writing "love my job, got married, have Parkinson's, happy new year!"  I made a mental note to reach out when I was able to write something informative, sensitive, comprehensive, and not pity-inducing.  This was gonna take some time.

It would take me six months to work up the courage, and two hours to write a Reader's Digest of my life without her in it.  With our birthdays being 12 days apart and with Summer Vacation looming, I purchased a card, folded my two-page letter (which I boldly included my email and phone number and a note we'd be visiting my parents for the next two weeks), sealed the card, and dropped it in the mail.  I went home and packed for our travels, not mentioning to the Awesome Husband what I'd done, so as to save myself from any embarrassment should she not call or write.

My Family Tree Must Have Knotts

This was the year we weren't going to jam.  Last year - we couldn't possibly duplicate that effort.  Over 40 flavors and more than 420 jars ... *whew*.  Sure, we raised something like $2,300 for the Parkinson's Disease and Movement Disorders Center - I'm VERY proud of that - but still, 2013 was gonna be our year off.  We even booked two weeks of travel that involved the weekends we traditionally jam.  2013 - Travel.  NOT Jam.

I blame the visit to the open air market.  And the plums that were there.  They were ... perfect.  Deep color, no soft spots, amazingly fragrant.  I can't speak for the Amazing Husband but that's when I started to crumble.  My own mother was of no help.  "The Blackberry Vanilla.  Definitely my favorite.  Looking forward to more of that next year."  Terrific ... THANKS Mom.

We returned home (after astonishingly good AND not-so-good meals, overwhelming kindnesses by total strangers and a renewed friendship ... I'll write more about those experiences in due time) and unpacked.  The plums weren't foremost on my mind, as there was plenty to be done that DIDN'T involve jamming.  Like - sending jams to old dear friends.  The packing, wrapping, labeling .... all second nature really.  And heck, we HAD jars still from last year.  We had flavorings.  We had everything but fruit.

"Ok well", I started, "we can make Blackberry Vanilla and ... and ... maybe Strawberry something.  Nothing overly detailed or messy.  Strawberry Pomegranate, maybe."

And then there was the purchase of more jars.  "I picked up 7 more packs", said the Awesome Husband.  I was just as bad, managing to buy 6lbs of cherries when I went to the store (forgetting the lemons I had intended to buy in the first place).

Soooooo this last Saturday, in the year we WEREN'T gonna jam at all, we made 5 flavors packed away in 52 jars.  And today?  Today when I was gonna lay low and try to let my body adjust to new medications and crappy sleep cycles and boring days at work?  Today I purchased 12 more packs of jars (plus 2 packs of quart-sized ones ... ya' know, just in case).  And I noticed my local farm has announced the arrival of peaches.

I think I should research my family tree ... see if there are any "Knotts" or "Smuckers" in it.

Measured in Moments

Seeing you stand, against the railing of the escalator, waiting.  Not in the crowd, but somewhat further back.  Checking for a familiar face  - catching a glimpse of the me you thought I'd be.

Holding you there, just for a moment.  Everything stopped, and then full speed ahead. Getting my bag. Sitting next to you.  Finally.  Meeting your family.  Knowing your stomping grounds.  Seeing your history through your eyes. Talking.  Laughing.  Crying.  Staring.  Watching.  Falling into the ocean.  Sleeping.  Sighing.  Sharing.  Listening.

Our life together is not measured in minutes but by moments.  We have already had so many.  We'll have thousands of thousands of thousands of thousands of thousands more.

Bring it on.

Is It Me?

It's been a month of "just" being on my Selegiline.  Each twitch, quiver, shake, shiver ... each cramp or tilt or swerve makes me wonder ... is this new?  Is this a decline?  Is this normal ... or is this MY normal?  Am I losing weight because Winter is fading and I'm eating less or am I losing weight because I'm eating less due to a loss of appetite (a PD Symptom)?  For crying out loud - isn't ok to just not be hungry anymore?!?

There's no way to know.  Imagine if, once a week, you had to report in depth on ...... how your teeth felt.  Are they feeling cleaner today than last week?  Are the spaces in between the same or different?  Is your jaw tighter than it was last Tuesday?  Do things line up the same?

For my PD, that's kind of how it feels when I notice, for instance, that I sit in my chair with my feet flat on the floor and use them to swing my chair left, then right, then left.  Is this a new thing I'm doing?  Am I doing it because I'm AWARE I want to be doing it - or is this a new symptom?  Did I do this last month?

In happier news, the one driving me crazy with all this is me.  The Awesome Husband is either keeping his concerns to himself and/or realizes that anything he's noticing about me I've already noticed and am already wondering about.  Our daily life is wonderfully, marvelously un-large-eventful.   My diagnosis does not consume either of us ... it just simply is there.  It isn't ME.  It's a small part of who I am today and may be a part of who I will become ... but it's not now and will never be all of me.  It is also not us.

I will always ... WE will always ... I dearly hope, be more.

...And Now The Real Test Begins.

I visited, for the last time for awhile, Dr. M yesterday.  It's hard to believe that I've been in his testing program for 44 weeks already.

Dr. M is part of a group of Neurologists conducting a Phase II double-blind study of an already-FDA approved medication that may - or may not - slow or even halt the progression of Parkinson's.  Dr. M's recruitment for the study went very well, but a few of the other nationally-based doctors didn't have as much luck so, while I'm done with the testing period and interested to know what conclusions have been drawn, it will likely be another year or more before that happens. And I likely will never know if I was even ON medication.  Since it's a double-blind study, neither doctor nor patient are told if medication has been given or if it's a bottle of sugar pills.  After Dr. M submits his findings from the study, he'll be told which group took what.  Honestly, I'm not all that interested to know which group of participants I was in.  For me, the real test has just begun.

See the study had various parameters to it that meant only a small percentage of PD patients could be involved.  You had to have received a PD diagnosis, not yet be taking Carbidopa/Levodopa (C/L), and be taking Selegiline for more than 8 weeks but less than 8 months.  Those don't sound like 3 large hurdles but, in reading through past entries here, I realize it took me 3 years to even decide to get my tremor looked at by a doctor.  And then I went to a Neurologist a couple of months later.  And, a month after that, I got my second opinion.  At that stage, I was on C/L (used to confirm diagnosis only) and was still absorbing the diagnosis itself.  I started taking Selegiline in November and Dr. M timed my trial to start about 2 months later, so that I'd be squarely in the 3-hurdle window.  A lot of PD patients don't have access to Neurologists who are actively seeking and testing new treatments, so *if* they researched trials on their own (which I'm told about 80% of them do), there's a high likelihood they would already be outside the 8-month parameter.  In fact, if I hadn't saught out that second opinion, I wouldn't have known about the trial because my own Neurologist isn't really active in the "trial and testing" community of physicians.  (That may read as a criticism, but it isn't.  Her employer is not a "teaching hospital", so she's not required - and possibly isn't allowed - to run trials and tests of new treatment methods.)

What all ^^that^^ means for me is that in the ~64 weeks since my diagnosis, it's possible that I've spent 44 of them on medication which slowed or halted my PD journey, and and additional 4 weeks on C/L, which masked my PD completely.  Or, using the same math, I only know what my non-medicated standard rate of progression is based on 4 months - a time period which included my (and my awesome husband's) absorption of my diagnosis, a few frantic weeks of MRIs and EKGs and blood work and telling my immediate family and my coworkers and OH YEAH getting engaged(!!) and planning Thanksgiving for ~14 family members and dealing with the holidays and shipping packages and ... well, honestly I can't say it occurred to me to note every little twitch 'cause we were just a tiny bit busy.  And I didn't realize that I'd be part of a testing pool so yeah, those 4 months were VERY much a blur of activity.

So my real test starts today.  I awoke and got dressed and ready for work and it dawned on me that I now take 3 less pills each day.  (Yes, I still take 13 pills in the morning and 4 at lunchtime but 17 IS less than the 20 I was taking so hey, it's a little victory but it's still a victory!)  Today I am aware - maybe a little over-aware - of each twitch and shake and motion I make.  It is, of course, about 50 degrees in the office and I'm practically sitting with the space heater in my lap, but at that temperature, we're ALL shaking just trying to keep warm.

But today I'm "only" on Selegiline for my Parkinson's ... so what's my progression rate and how "bad" am I?

Time will tell.

Full of Thanks

Tomorrow is a day to remember all the graces, the gestures, the kindnesses of all sizes, and to be thankful.

While I'm not a pie-eyed, rainbows and unicorns, "all the world is wonderful all the time" type, I'm well aware that my outlook, in general, is silver-lining lined.  Heck I'm actually thankfull my tire blew out when and where it did because it was followed by general niceness by lots of folks.

I believe in "Thank You".  I believe in smiling.  I believe in being gracious, if at all possible.  Some days it takes a LOT of energy to be gracious and even just to smile.  I know that.  I'm a realist.

My health did NOT turn out as I'd ever thought it would, but I'm thankful that, since I have Parkinson's, I at least have access to the health professionals who help care for me.  My career did NOT turn out as I thought it would, but this path opened up so many other doors for me.

Last week, (and now I'm crying) last week I made a pledge and sealed a life-long bond.

Hell yes, I'm thankful.

Take a minute.  Stand up.  Listen.

Give thanks.

It is SO worth the energy.

Damn You, Opie.

It's all Ron Howard's fault.

"Parenthood" is one of those films I can watch everytime it's on.  If you don't like Steve Martin, don't worry - it's got Tom Hulce.  Don't like Mary Steenburgen?  The next scene has Dianne Wiest.  Can't relate to the "perfect yuppy" family? Wait 'til you see what one of the kids finds during a blackout and you'll realize that NONE of these families have it all together.  Just like real life.

So when I heard that "Parenthood" was gonna be made into a TV show a few years ago, I was ready to watch.  Sure the families were different and the actors and characters had been changed but Ron Howard was still involved.  I've been watching since the pilot and, while not every storyline is a home run, if you just wait a few minutes, it will change ... just like in the movie.  Just like in real life.

Well, last week I got worried.  It felt like one of the characters was being given a storyline that was gonna feel false and cheap.  A lead character was given breast cancer.  She already has plenty on her plate - a child who just left for college, another with Asperger's, an infant, a very distracted husband - and this new story could've gone horribly wrong.

Instead, as the Awesome Fiance and I watched, I found myself pausing the show and saying "she's feeling like no one is listening", "he should just let her vent and not say anything", "the doctor she sees isn't a debate she wants to have".  And, over the course of the show, the Awesome Fiance started asking me "what's she thinking about now" or "how is she feeling" and, just like the movie did so long ago, it reflected real life.

But - fair warning - if anyone gets Parkinson's, I'm removing "Parenthood" from our TiVo.

A Low "Ha!"

I haven't written much - or, really, at all - about the incredible two week vacation that the Awesome Fiance and I took this summer.  We've been back for over a month now so it's probably time to revisit it.

I could write about the travel experience itself but the airline (I'll call it "Untied") would probably put me on the "no-fly" list after reading my tirade.  I'd have to create new, more descriptive words beyond "dunder-headed ass clown" and "inept corporate maggot" ... and I'm just not feeling all that creative today.

I could write about this being the ONLY time in my life I've actually taken two whole weeks from work for vacation.  Yes, I had a sabbatical, which was 6 weeks, but in all the 29 years I've been employed, I've never taken two solid weeks of vacation.

I could write about the food ... OH.  MY.  LORD.  THE.  FOOD. ... but that'll probably just make me hungry and I probably wouldn't be able to describe some of the dishes to the level of deliciousness they deserve.

I think I'll write about my overall take-away from the first portion of our two weeks.  The "Family" portion.

Ya' know that family you see on occasion when traveling?  Grandparents, grown children, grandkids ... dining together, smiling and laughing, posing for goofy photos, etc?  The clan that piles out from the minivan and walks into the mall, maybe wearing similar teeshirts ... or the multi-generational gathering on the beach - a few are reading, some are splashing about in the water, the youngest members are creating elaborate piles of sand?  Well, I was part of that family as a child.  My best friend really did have the perfect family and I spent countless hours as an extended, adopted family member.  Oh, they were SO much better than my real family.

Dad was a teacher, an avid weekend golfer, and liked to take rides on his motorcycle.  Mom, also a teacher, liked to go on walks, spend time with her family, and be outdoors.  Son - the youngest member of the family - was into all things bicycle.  Daughter - my best friend - was everything I wasn't ... graceful, very pretty, delicate.  They'd include me on short weekend getaways and I'd see a family who REALLY enjoyed being together.  Parents who had conversations about news and politics and things that didn't involve work or animals or relatives.  Children who played nicely together and went to the movies together - not because they were told to but because they wanted to.  For me, it was surreal.

It was also fake.

I know now that my seemingly perfect adopted family ... was not.  Dad, it seemed, waited until the children were grown and on their own, and then got on his motorcycle and rode away.  Mom developed an eating disorder and handled her divorce as 'tho everything was fine when, clearly, it was not.  Little brother got married *WAY* too young but to a wonderful woman who nursed him back to health for a year after a very nearly deadly motocross accident.  And best friend, who had aspirations on being a psychologist, instead became a grumpy, gloomy, unhappy stay-at home mom who shielded her own small children from their "awful" Grandfather ... even as she herself continued the cycle of cheating on - and eventually leaving - her own spouse.  I stopped being a part of her life after her second child.  We just didn't have anything in common anymore and I got tired of trying to set up the lunch date that clearly was never to be.  We had a mutual friend who kept me updated on her activities and, last I heard, her two oldest children asked to move in with their father because they were tired of being told how awful both he AND their own Grandfather was.

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So while, as a child, I had my seemingly perfect family and my real one, as an adult I knew that my real one was so much better than "perfect".  It was flawed, but flawed in a way I understood.  The members (myself most assuredly included) were maddening, but in a comfortable way.  We have family logic for the things we do - twisted as it is but it is, at least, logic of some sort.  And, as the airplane drifted towards our family getaway home for the week, I thought that I was ready for the quirks and actions and whatnot that were likely to come ... flaws and maddening members and twisted logic and all.

Ohhhhhhhhhhhhh I was mistaken.

It's an exaggeration, to be sure, that I spent the WHOLE week closing screens, sliding glass doors, turning off lights, turning on ceiling fans, drawing drapes, turning on the air conditioner, and locking front doors.  It's an exaggeration, certainly, that the week was spent washing the same dishes, clearing the same table, drying the same glasses, closing the same freezer doors, and wiping the same counter-top surface.  It's an exaggeration, yes, that my island time was filled with folding towels and doing laundry and explaining how air conditioning works and sharing that, while I was sorry the upstairs was 76 degrees (aka "super cold") in the mornings, our bedroom was still at 87 degrees at 11pm the night before because no one could be bothered to close a door or shut a window to keep the air temperature at a reasonable number - say, somewhere slightly lower than 80.

It did FEEL like the whole week was like that, but I know it wasn't.

"But remember", you say calmly.  "Remember that you were sharing the house with young children and you're not used to young children."

"And that's very true", I reply just as calmly.  "But what makes you think I was talking about the young children?"

*******************
Ahhhhhhhhhhh but they are my people.  They are my family.  Are they perfect?  Ha!  No.  Thank heavens no, they are not perfect.

I Am Jam. Jam I Am.

I've gone through a *L*O*T* of changes in the past few years.  In fact, it would be accurate to say that changes - both big (my job, home, relationship status) and small (radio-listening habits, wardrobe, beverage go-to) - have been a constant for me.

I forget, though, that quite a few of these changes go largely unnoticed, especially by my friends who are based within my previous hometown.  Many are surprised at my living on the East Coast, or my not working in the sales technology sector.  And most have had NO idea that I have Parkinson's Disease.  As I've written here before, it's not the kind of thing one can just mention as an "oh by the way" sort of conversation topic.  If I knew someone who was diagnosed with PD (or something similar) and they shared the news with me, I'd have follow-up questions and I guess I presume that's true of others, too.  I could be wrong.

I was reminded not of what's changed but what hasn't changed in my life just last night, in a very wonderful way.  We sent a box of FMD jams to Shari, an ex-colleague of mine.  Shari and I worked in the same company on the same floor of the same building - and in the same department - for 3 years or so.  I eventually transferred into another division based in another city and, due to our different locations and job demands, I hadn't been able to keep in contact with Shari as much as I would have liked.  And then I moved and ... well ... we lost touch.  She sees Tim on occasion and, I guess, gets brief updates on me via him.

So it seems Shari's box arrived yesterday, and the receptionist alerted her to the delivery via email.  Shari forwarded me the entire email train, copied below.

*****************

From: Christina B/Reception
Sent: Monday, September 17, 2012 3:14 PM
To: Shari; Richard; Amber; Lindsay; Jeremy; Jack
Subject: Package in the lobby for you

Hello.

You have a package in the lobby.  Please come to pick up at your earliest convenience.

Thank you,

Christina B

*****************

From: Shari
Sent: Monday, September 17, 2012 3:15 PM
To: Christina B
Subject: RE: Package in the lobby for you

Hi Christina,

I am leaving for Korea and be back on Monday.  Can you hold it for me until Monday?

Thanks

Shari

*****************

From: Christina B
Sent: Monday, September 17, 2012 3:16 PM
To: Shari
Subject: RE: Package in the lobby for you

Hello,

Yes of course. We will hold it in our locked closet till then.

Have a safe trip!

Christina

*****************

From: Shari
Sent: Monday, September 17, 2012 3:20 PM
To: Christina B
Subject: RE: Package in the lobby for you

Thanks.  Do you know what it is?

*****************

From: Christina B
Sent: Monday, September 17, 2012 3:22 PM
To: Shari
Subject: RE: Package in the lobby for you

Not really - there's a sticker that says “homemade jam”.

*****************

From: Shari
Sent: Monday, September 17, 2012 3:27 PM
To: Julie
Subject: FW: Package in the lobby for you

Hi Julie,

You are the best!  Did you send me jam?  I am not in the office and asked the receptionist to hold it for me.

Thank you so much!  I am sorry that I didn’t get to see you when you came by.  I always ask Tim about you.  I hear that you are engaged!  Congrats!  I am very happy for you.

I really appreciate you always thinking of us.  Hopefully we’ll connect next time.

Take care,

Shari                                                                                                                                                                               

*****************

Yes, much has changed.  But, comfortingly, I still = "homemade jam".

The Cat Burglar

Well it seems we have a cat burglar in our neighborhood.  Not just "in our neighborhood", actually, but in our home.  Right now, in fact.  I can even identify this cat burglar.

We once called him "White Kitty".

Now we call him "Murphy".

Since the great Summer power outage of 2012, Murphy has called our downstairs his home, his bachelor pad, his very own man ... er ... cat cave.  Now that he lives under our roof with us, I've learned a few things about him.

(1)  He's strong.  When I hold Shiloh, I'm aware she weighs more than a cat should, but it's not "solid" weight - it's fluffy and soft.  Holding Murphy feels like you're holding a solid muscle.  He's buffed out.  If he lived on the beach, he'd be working out every day.

(2)  He's inquisitive like cats are, but very timid.  He wants to see what is going on, but it also terrifies him.  He wants to play with his "fish on a line" toy, but the noise it makes freaks him out.  He wants to meet the other kitties in the house, but he doesn't know anything about cats.

(3)  He's VERY nocturnal.  From the time I leave for work to the time I come home, it appears that he sleeps.  He also sleeps from the time I arrive at home until about 9pm.  At 9pm, he's as pleasant, as cuddly, as wonderful as any cat can be.  It kills me that I can't stay up with him until midnight or so just to hang out with him.

************
A weekend or so ago, the Awesome Fiance and I went to our favorite frame shop to drop off some art and then to the store for a few things.  Having just recovered from the power outage, we needed to restock.  Shiloh was, as usual for that time of day, sound asleep in her room.  Tabby had the run of the upstairs and Murphy had the run of the downstairs.  (Caring for three cats that either don't know or don't like or can't be trusted enough to be left together can be a REAL pain.)

We returned a few hours later.  Knowing that Murphy could easily be waiting by the door and could maybe dart outside, I went in first.  After a brief glance at the bottom and top of the stairs to see if it was "Murphy-free", I pushed open the door at the top of the stairs which leads to our kitchen.  I rounded the corner and noticed a bit of Tabby-colored fur.  This time of year, it's not unusual to find a tumbleweed of kitty fur, but as I looked further, I noticed another small fluffy clump ... and then a third and fourth.  "Uh oh" I muttered.  I glanced into the living room, expecting to see Tabby somewhere but, instead was met with a lovely pair of large, bright blue eyes.

Murphy was sitting on the chair, waiting like a character from The Godfather.  He was expecting me.  A glance at his coat seemed to indicate no obvious injuries.  I turned back to the kitchen and was met with a lovely pair of even larger, bright green eyes.

Tabby was sitting under the table.  She seemed to have an expression full of questions on her fuzzy face.  "What IS that?  How did it get in?  What the hell IS that???"  These were good questions.  How DID he get upstairs?  By this time, the Awesome Fiance was in the kitchen, too.  He was ... un-amused.  I escorted Tabby past Murphy (who was still waiting for me while he sat on his chair) and we went to our bedroom.  Tabby was completely pissed off as she stomped by Murphy for a brief exchange of words, but she was, at least, uninjured.  Just upset.  "No seriously - what the hell WAS that thing?" she seemed to continue to ask me as I checked her out and tried to calm her down.

I went back to the living room to Murphy, who had two tiny Tabby-sized claw marks on his nose, and we went downstairs.  I pushed the kitchen door to allow us downstairs and, for a brief second, thought "he opened this??? but ... no ... it's a heavy swinging door.  He'd have to run fast after opening it or it'd start to close on him."  We sat downstairs and, after a moment, Murphy went to a favorite spot to hide away and nap.

************
Since that event, I've envisioned (in almost cartoon fashion) what this must have been like to see:  Murphy cautiously darting up the stairs after he is sure we'd left.  Tabby sniffing under the door and then walking into the living room for a nap.  Murphy hearing Tabby and pushing against the door, not realizing that it'd open and then, when seeing it would, butting his head against it until he flopped through.  The door closing behind him - locking him in and sealing his fate.  Tabby, alarmed by the commotion, re-enters the kitchen and they exchange looks.  Murphy tiptoeing past Tabby, while she yells at him for breaking and entering.  Shiloh waking up and demanding to know what's going on.  Murphy turning his head in Shiloh's direction and then turning to Tabby, who smacks him in the face and squarely on the nose.  Murphy telling Tabby to knock it off, causing Tabby to purposely fluff her fur in an effort to look larger than she is.  Murphy scrambling onto the living room chair, not daring to reenter the kitchen where Tabby is still yelling and not able to hide in the hallway where he's hearing Shiloh.  He sits, trapped in the chair.  Tabby sits in the kitchen, trapped by Murphy's location.  Shiloh, having missed the excitement, is bummed out and goes back to bed.  We return home to witness the aftermath and wonder about the goings-on.

But today, some of it came true in an even funnier fashion.  As I was washing his breakfast bowl out, I noticed a noise behind me.  I glanced to my right and saw the kitchen door swinging closed, and then open again as it was being pushed by a strong, muscular, all-white paw.

Oh he IS a smart ninja kitty, he is.

Go To Hell

It could be worse.
No one is on fire.
No one is shooting at me.
No limbs are at risk.
No lives are at stake.

I embrace that.  Really, I do.  I am now, and have always been, the glass-size-is fine type.  I have found silver linings in the darkest things.  (Health issues?  Thank heavens for well-informed doctors.  Car troubles?  Automobiles are a luxury.  Airplane delay?  Travel is amazing in this century and airports are great for people-watching.  Bad hair day?  What a cute hat!)

Along with a good portion of the state, The Awesome Fiance and I lost our electricity late Friday evening.  It was hoooooooooooooot that day.  We scrambled Saturday morning, calling vets to see about boarding the cats (no dice - no power there, either), rearranged the entire house to move the felines into the basement (yay!  moving hot, angry cats to strange parts of the home is sweaty work!), picked up dry ice for our home (and two others), adjusted our whole weekend plan (more jam-making) and tried to keep our heads on straight.  We skipped dinner (it was too hot to eat) and spent the night in two different homes (notice I didn't say we SLEPT in different homes ... there was very little sleeping where I was due to bouncy kitties and a not-comfortable sleeping surface).  Sunday morning started early with setting up a generator to power the bare essentials in three homes (not including air conditioning unfortunately) and lots of sitting in the dark trying too not notice it was 87 degrees inside the house before Noon.

Oh - and our air conditioner was having issues last weekend, too, so this was the second weekend in a row with too-much in-home heat.

And I drank a big gulp of sour milk (accidentally).  And got chewed up by mosquitoes.  And The Awesome Fiance walked into the corner of a dresser and bruised the heck out of his arm.  And we sweated.  A lot.

By Sunday mid-day, we were done with it.  We went out for lunch and to a bookstore - mostly for the indoor cool air.  We reluctantly headed back home and re-rearranged the feline population, recognizing it was too warm inside for them to be too angry at each other.  The house properly trashed (boxes everywhere, hastily arranged drapes, cardboard blockades in stairwells), we gave up by 9:30pm and tried to get *some* rest.

So of course the power popped back on at 10pm.

Thus began the un-trashing of the house, the un-hooking of the generator, the re-re-rearrangement of the now totally over it felines.  Showers were taken, fans were strategically placed and by Midnight, we were nearly back to normal.  I awoke at 4:45am to relocate the final feline (once the air conditioning had done the trick upstairs) and pretty much was up from that point onwards ... just in time for work.

So go ahead and tell me to be grateful that the power is restored (I am) and that the air conditioning is even available (of course).  Remind me that there huge wild fires eating up a good portion of Colorado (I'm aware of that) and that we're lucky our water service was never interrupted (I agree).

And I will still tell you to kindly shut the fuck up.

Yay Me!

I done good.

A few years back, for our first birthday(s) "together", I managed to *really* surprise The Awesome Fiance (then known as The Awesome Boyfriend) with a seemingly simple gift ... a lunch box.  It wasn't actually all that simple and involved some pretty good Internet search skills, quick fingers, and putting my trust in the seller of said lunchbox that the item was as pictured.  (It was.)  Anyway, the gift went over well and was greatly appreciated, judging from his reaction and from his writing about his memories with his original lunchbox on his blog.  (Anytime I think I write well, I visit his blog and know I'm not all that talented after all.  I DO WISH HE'D RETURN TO WRITING *ahem* ....... but that's not my decision to make.)

Since that birthday gift exchange, we've had a few occasions to exchange presents - anniversaries, Christmases, birthdays - and I've wished to be able to come to the same level as that original gift.  Which is not to say I've been phoning it in on the gifts I've given, but - for that particular gift anyway - I felt I'd peaked and wasn't measuring up.

I knew what I wanted to do for this birthday for a few months now - upgrade our flights on our Summer vacation.  It was gonna take creativity, a little deception, a LOT of luck, and some financial wrangling.  I mapped out the order of things I'd need to do so that I didn't miss any steps.  One wrong move and I'd wind up with a surplus of airline miles and no way to turn them in ... or, worse, seats but no miles to secure them with.

One random Saturday morning, the airline alerted me via email that the miles were in my account.  The email arrived at something like 4:30am and I read the message at 6am.  I reeeeeally wanted to sleep in but I knew I'd never forgive myself if I screwed this up (plus I didn't really have a backup plan if this fell through) so I dragged myself carefully from the bed and slowly walked from our bedroom to the living room.   Tabby looked at me from her bed as if to scold me for messing up her routine so I quietly sat down and, took a deep breath and crossed my fingers, logged into my airline account to see what, if anything, was available in the way of better seats on our flights.

As it turned out, being awake at that hour worked out quite well.  Seats were requested and granted and fingers were uncrossed.  Now, how to wrap them.  It's not as 'tho anything is done via actual paper anymore.  No one has actual airline tickets ... confirmations, yes but even those are likely electronic.

A quick search of words ("travel" and "folder") brought me to a vendor in Texas who had a collection of 1950s travel-focused items, including original airline-created travel folders.  If one was traveling in the 1950s, one worked with a travel agent, who would issue actual tickets, luggage tags, a fully-customized itinerary and a pen by the airline they'd be using, all bundled up in a folder specific to the region the flight was headed.  It was just dumb luck that the folder was created by the same airline we booked with going to the same area that we'd be venturing to.

From there, I found a few grocery items either associated with or containing the name of our destination, and appropriate wrapping to use to decorate the gifts with.  (I used a tablecloth that had decorations of our vacation spot.  Hey - sometimes ya' need to be creative.)  I swung by a clothing store for a "travel" themed shirt and contacted my local florist to recommend a vendor to provide me with the right flowers.

Well, it all came together.  Last night, The Awesome Fiance experienced his virtual vacation-themed birthday.  Everything worked out great and it was all appreciated.  It may not have been much to open/unwrap, but he mentioned a few times he saw the thoughtfulness I'd put into it and that ... well, that honestly was what I was REALLY hoping for.

We're now 364 days away from his next birthday.  I'll give myself a few months before I start thinking about what I'll do for it.

... And Many Morrrrrrrrrrre!

Happy Birthday to you.

Happy Birthday to you!

 




Happy Birthday Dear Human who caters to my every mewed whim ...

Happy Birthday to you!

Good Enough Isn't

Out of all the different ingredients that can be added to a batch of jam (and there are a TON of available options if you're willing to get creative), the one that makes the biggest difference to the end result is the fruit being used.

If you can talk to the individual who planted or watered or weeded or picked the fruit you're planning to use for jam, it's the closest thing to getting a guarantee that your end result will be pretty great stuff.

No matter what experts say, I don't believe that there's a substitute that tastes as good as "field fresh" fruit.

It's true that you CAN make jam from frozen stuff where you don't have to remove stems or seeds or pits, it's also true that it's that frozen taste you're gonna be preserving - and since there will always be more bags of frozen berries available, why would you need to "preserve" that??

For me, it's the difference between a garden tomato and a supermarket tomato.  They're the same thing, but they taste like they're barely related to each other.  So for everyone who says "Well heck - I can BUY jam at the supermarket" - yes, yes you can.  But it's never gonna taste like this.

FMD 2012

Healthy pets (and humans).
Sunny mornings.
Sharing something I think is tasty ... and having others say so, too.

It's June (at last!) and the weather is encouraging the ripening of fruit as you read this.  "FMD" HQ, which is to say our home, has been stocking up on jam jars, tasty ideas, new methods of incorporating flavors, and contacting local farms to warn them we'll be placing fairly decently-sized orders of various fruits as they become available.  (What's a fairly decently-sized order?  How about "Hello Ryan?  Yeah - any chance we'll get those 20 pounds of cherries this week?  Great!  See ya' then.")

Having recently completed creating 7 different strawberry-based flavor combinations (resulting in 75 filled jars), we're planning on moving on to cherry-based jams this weekend.  I'll post pictures of the fruit we're using (because I think the first pic I took looked great - I just need to upload it so I can add it here) and, as the batches are done and stored, will share some of the 2012 new flavors.

I WILL say now that the two taster-jars I brought into work today were overwhelmingly approved.  I don't let anyone just say "nice job" or "mmmm" as I would much rather know what is working - or not - for each flavor (and each taster).  As much as "mmmm" is nifty to hear, it doesn't really inform me much and I'd almost rather hear "uh - yeah - that ... that's too bitter" than just get "mmmm" as a review.

It's nice to create good-tasting things.  It's pretty damn cool to hear others say things like "I know you won't officially SELL these but *oops* this $10 just fell onto your desk."

In short, making jam that folks enjoy makes me smile.  Lucky for them, I like to smile A LOT.

FMD 2012.  Coming soon, to a mailbox near you.

Things I Hear That Are Hard To Swallow

Yesterday was my second in-office review since I started this Phase II test.  (All is well and I still show no signs of a tail.)  Dr. M did the physical review/tests himself, which is unusual.  His time is typically gobbled up by reviews and meetings and conferences and patients.  I suspect he only had time on his hands because I was the first patient in the office.

After going through the usual dog and pony tricks that I'm used to (finger touches, foot bounces, repeating movement quickly for 30 seconds, balance testing,etc), he wrote down his opinions on the official paperwork.  Sensing he wasn't rushed, I mentioned that I'd read, via a Fox Trial Finder Update, that the Neupro patch had (once again) been approved by the FDA.  Dr. M perked up and his whole expression changed.  He became quite animated as he expressed his excitement when he'd heard this news a few weeks before it was publically announced.

BACKGROUND:  Neupro is a pharmaceutical patch that was originally approved by the FDA in 2007.  It was - and still is - the only extended-release dopamine agonist (ER DA) available as a patch.  It was created to treat symptoms associated with both early AND advanced-stage Parkinson's.  The specific benefit of Neupro is that it is able to maintain a constant level of drug throughout the length of an entire day.  This means patients using Neupro would likely enjoy longer "on" periods, even while sleeping.

The FDA pulled it from the US markets in early 2008 after complaints surfaced that the medicated-gel coating the patch was using was granulated during the manufacturing process, which prevented proper dosing of the medicine.  So the manufacturer adjusted their methods, and had to go through re-testing of their product (which they already knew was working because no other countries pulled it from their markets).  The whole thing took four years to re-create and test.  But, now that the hurdle has been cleared, it will reappear in the US this July.

Neupro was Dr. M's first choice of ER DA and he told me how he had to break the news to his patients that this medicine  - the stuff that was helping them sleep calmly at night, that every patent was able to use no matter the level of their Parkinson's affliction - was being pulled in the US, and why.  He noted that all agreed the US FDA did the right thing by pulling it ... but this was the only ER DA available as a patch, so it was a crushing thing to say to those he was treating.

Why, you may ask, is that such a big deal?

Because along with maybe screwing up your balance and/or sense of smell, along with maybe causing you to "freeze" and/or shake uncontrollably (I have a GREAT vein in the inside of my right arm - but it's useless to me now because that arm shakes.  Needles and twitching are never a good equation.), along with maybe making you stutter and/or drool, Parkinson's can take away the ability to swallow.  Thereby eliminating your ability to take pills.

Yeeaaaaaaah.  That's .... well .......... that's just a magnificent kind of evil.

I've always thought of myself as being a very lucky person.  It's strange to think of yourself as being lucky because there will still be a way for you to be medicated if you can no longer swallow.

I'm Aware That It's April

April, it seems, is National Parkinson's Awareness Month.

Huh.  I must have missed the memo.

The Awesome Fiancé and I were watching TV last night when Julianna Margulies and Michael J. Fox appeared on our screen.  They had a brief message, announcing it was National Parkinson's Awareness Month and, basically, encouraging folks to get involved.

I noticed a couple of things.  First was that the message was delivered 98% by Ms. Marguiles, with Mr. Fox barely saying a word.  He sat remarkably still which I found strangely nice to see.  Of course I knew why he was in the announcement, but couldn't figure out why Ms. Marguiles was in it.  Was she a patient too?  Was there a connection I was missing?  I made a note to search this the next day.

The second thing I noticed was that the minute the words "Awareness Month" were spoken, The Awesome Fiancé immediately looked over at me, almost by instinct.  Rather than meet his gaze, I gave a half-hearted grin and said out loud "oh joy!  Look - I get a whole month of awareness!", though - truth be told - I wasn't really bothered by it.  Basically any press given towards PD is, honestly, a good thing so - sure - bring it on.

Today I sat down and searched for the Marguiles Parkinson's connection.  It seems Mr. Fox is appearing on her current show where he plays a character similarly diagnosed as he has been.  Intrigued, I watched the two minute long interview from the show.

Which was a mistake.

In the interview, Mr. Fox talks about how he downplays some of the symptoms he deals with when necessary.  I think that's what he said anyway.  It was hard to concentrate on his words because he was in a constant state of unfocused motion.

Now I know why he goes on camera this way.  As I've shared with my family and co-workers, he purposely goes off his Carbidopa-Levodopa prior to giving interviews.  He does this because by not taking his medication, he guarantees he'll be "off" and dealing with dyskinesia, which are the uncontrolled movements we all see.

This planned non-medicated strategy sounds a little screwy but consider this:  If you're interviewing someone with a debilitating, long-term, incurable disease and they look tan and healthy and "normal" ... well who's gonna write a check to support THAT foundation, right?  As twisted as it seems, if you're talking to someone who is "ill", it is easier for society to sympathize, to write that check, to look for ways to help if they can actually "SEE" the disease and all that it comes with.

Don't believe me?  Pay attention the next time you see an ad for any "save the animals" group.  Do they show a much-loved and well-groomed dog being walked around the ring at the Westminster Kennel Club Dog Show?  No of course not.  They show you some sad-faced mutt sitting alone in a tiny cage at a shelter.  In this contest, the mutt wins the prize every single time.

Having learned of April being "PD" Awareness month, I also decided to read the text of the Senate Resolution which, apparently, was approved and passed in March 2010.  It reads:

Whereas Parkinson's disease is the second most common neurodegenerative disease in the United States, second only to Alzheimer's disease;  (That was news to me - I figured it'd be in the top 5 but didn't know it was #2.)


Whereas even though there is inadequate comprehensive data on the incidence and prevalence of Parkinson's disease, as of 2010, it is estimated that the disease affects over 1,000,000 people in the United States;  (This was NOT news to me.  As my doctor's and I have discussed my own case, we've agreed that I probably was showing signs of tremor as early as 2007.  And, honestly, I probably would've waited on seeing a doctor about "my shake" even longer if it wasn't for The Awesome Fiancé becoming more and more aware of my trying to hide it.)

Whereas although research suggests the cause of Parkinson's disease is a combination of genetic and environmental factors, the exact cause and progression of the disease is still unknown;  (Also not news to me.  My PD is just another "health hiccup" I have ... just like me being the only family member who doesn't have allergies, or the only one who gets migraines.)

Whereas there is no objective test for Parkinson's disease and the rate of misdiagnosis can be high;  (Yeah - you may recall that I started out with "essential tremor", but that wasn't the fault of my GP.  He likely doesn't see much Parkinson's out of the blue like mine.)

Whereas symptoms of Parkinson's disease vary from person to person and include tremor, slowness, difficulty with balance, swallowing, chewing, and speaking, rigidity, cognitive problems, dementia, mood disorders, such as depression and anxiety, constipation, skin problems, and sleep disruptions;  (Please please please God - give me shakes, take away my ability to write long-hand, give me acne, but don't mess with my head or my bodily functions.)

Whereas medications mask some symptoms of Parkinson's disease for a limited amount of time each day, often with dose-limiting side-effects;  ("For now", she wrote confidently.)

Whereas ultimately the medications and treatments lose their effectiveness, generally after 4 to 8 years, leaving the person unable to move, speak, or swallow;  (God already knows how I feel about this.)

Whereas there is no cure, therapy, or drug to slow or halt the progression of Parkinson's disease;  ("For now", she wrote even more emphatically.)

Whereas increased education and research are needed to help find more effective treatments with fewer side effects and, ultimately, an effective treatment or cure for Parkinson's disease; (which reminds me that my follow-up appointment for the trial I'm participating in is next week so I'll need to bring my unused medication with me.)

Whereas the Federal Government, through the National Institutes of Health, the Department of Defense Neurotoxin Exposure Treatment Parkinson's Research Program, the Veterans Affairs Parkinson's Disease Research, Education and Clinical Centers, and other agencies, supports vital work to better understand Parkinson's disease and to find new treatments; (as they damn well should.)

and

Whereas the Parkinson's community will gather in Central Park on April 24, 2010, for the Parkinson's Unity Walk, an annual gathering inspiring people with Parkinson's, their friends, and their families:  (This year it'll be on the 28th, but I'll pass, thanks.  I'm just not a "community joiner" type.)

Now, therefore, be it resolved, that the Senate--
(1) supports the designation of April as Parkinson's Awareness Month;
(2) supports the goals and ideals of Parkinson's Awareness Month;
(3) continues to support research to find better treatments, and eventually, a cure for Parkinson's disease;
(4) recognizes the people living with Parkinson's who participate in vital clinical trials to advance our knowledge of this disease; and
(5) commends the dedication of local and regional organizations, volunteers, and millions of Americans across the country working to improve the quality of life of persons living with Parkinson's disease and their families.

So while every cause has their rubber bracelets (ours says "Move to beat Parkinson's") and their official cause color (ours is a nice shade of blue), it seems the Senate gave me and my fellow ... "movers and shakers?" ... April.

In spite of T. S. Eliot starting The Waste Land by writing "April is the cruelest month", I rather like April.  Historically, very good things have happened to me in this month, most notably April 22nd in 2009.  Yes, I was already showing signs of Parkinson's ... and somehow, that was not even among the top fifty things I was aware of.

"Keyboard, tree, calendar, exit, theater!" ...or "How I Became A Lab Rat"

This past Tuesday, I had my "baseline 3 1/2 hour doctors appointment to ensure my overall level of health" before I embark on a 44-week double-blind medication study on the side effects of an already-FDA approved medication for one health issue which MAY (or may not) have benefits towards the treatment of Parkinson's Disease.

This is an unpaid, completely voluntary, fairly non-invasive study which is being conducted on about 300 Parkinson's patients nationally - all of whom are at about the same stage of progression as me.  The "fairly non-invasive" part is that you voluntarily give your entire medical history over to a team of doctors, researchers and hospital administrators (whom you may or may not have already met) who study your treatment for nearly a year.  If this were an invasive study, it would include medical procedures like spinal taps and such and, call me a wuss, but I already HAVE fuckin' Parkinson's, thankyouverymuch so keep your damn needles the hell away from my back.

(ASIDE:  God, please bless the people who voluntarily sign up for invasive studies.  Seriously.  I've watched someone getting a spinal tap and ... *shudder* ... I can't imagine being totally healthy and going through that kind of pain all in the name of Science.)

My mostly needle-free test consisted of questions about my health, and quizzes of cognition, short-term memory, balance, and an assessment of my current level of Parkinson's.  Oh, and a 40-page scratch and sniff test.

Yeah, that part was strangely frustrating.  "Here - sniff this."  "Ok, that's BBQ" (which triggered my head to think "wow - BBQ would be good for dinner").  Then it was "Now sniff this."  "THAT'S a dill pickle."  (Great, now I want a dill pickle.)  A few I really couldn't tell what the heck they were and so I'd see the choices of what it COULD be and then go from there.  These scents are all generated in a fake sort of way (meaning a disclaimer below the "banana" scratch area should read something like "no bananas were harmed in the course of creating this smell"), so the chocolate one smelled NOTHING like actual chocolate ... ... ... says the girl that can still taste the difference between Quik, Hershey's, and Guittard.  By the 27th scratch, my fingers smelled like they'd walked through a Las Vegas buffet - and not in a yummy kind of a way.

The researchers took a blood sample (using an extremely thin needle - honestly I didn't feel it at all), a urine sample, and swabbed my mouth - all to get DNA samples to test for any markers of Parkinson's.  If they can get enough samples, I guess, they'll be able to find the specific link in the strand and ... I dunno ... alter or remove it for future generations?  Anyway, they've got all my "stuff" now ... hey - maybe they can use it to make a new and improved version - Me, 2.0!

The pills I'm taking for the next two weeks are either three capsules of nothing at all, or two capsules of nothing and one with 15mg of the medication being tested.  After those two weeks are up, I'll turn in those bottles and get three new bottles - which will either be three capsules of nothing at all or two that each have 15mgs of medication and one that is just a "sugar pill".  After two weeks on that, I'll again turn everything in and get three new bottles, which will be all medication or all nothing.  This is done so that the body can adjust to the (possible) medication - vs. just tossing 45mg at ya' and saying "so, how do you feel?"

When I took my first dose (in front of the researchers, who then kept me under observation for 45 minutes), I felt like one pill MAY have weighed more than the other two ... but that could absolutely be my mind playing tricks with me, which IS part of a double-blind study in the first place.  I was asked how I felt about every five minutes and, after the 3rd time, started coming up with different responses:  "I haven't sprouted a tail yet" to "Don't seem to be frothing at the mouth" to "Well I don't FEEL invisible yet".  While this may read like I was bothered by the near constant checking in, I was honestly glad that my health was in their hands.

Anyway it's day four on the "possible" medication. No vivid dreams (like what I had when I was on Carbidopa-Levodopa - yikes ... really creepy stuff) and my arm tremor seems about the same - maybe it happens a LITTLE less often (but last week was super stressful at work so it could just be that).

I guess we'll see what the next 43 weeks are like. I note in my Parkinson's Daily Diary when I take my pills, when I eat, and I rate my shaking throughout the day, all of which I show to my doctors and keep it current for my own benefit so, over time, maybe I'll notice a change ... HOPEFULLY for the better.

OH - but one kinda funny thing happened during the course of my visit.

For the short-term memory portion of my tests, each doctor/assistant starts by saying 5 random words for me to remember until I'm asked to repeat them back.  So Doctor 1 says "rabbit, scissors, coffee, tulip, crayon" ... and then we talk for about 5-6 minutes and at the end of the conversation, he asks for me to give him three of the words.  Then Doctor 2 comes in and says "cheese, shirt, church, velvet, keys" ... and we talk for 5-6 minutes, and they he asks for all 5 of his words.  Well THEN Doctor 3 comes in and says "store, cough, sweater, bells, baby" ... and at the end of our talk, he doesn't ask for his words at all!  So by the time Doctor 4 comes in, it's all I can do to not shout out "hairdryer, muscle, calm, ocean, paint, army, pencil!" just to get them outta my head.  So Doctor 4 asked for just two of his words, but I said "yanno, I'm gonna give you 7 - because Doctor 3 didn't ask for any of his and now they're just screaming to get out."  Suffice to say, my short-term memory - and, thus far, my sense of humor - is fine.

And I've checked ... I still don't see a tail.