...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.

Bears Do NOT Use Toilets

One semester in college, I took a course in advertising.  I wanted to learn the basics of why we see (and hear) what we hear (and see) on television.  I don't recall why I chose this exact course, perhaps my parents had said something about me watching too much TV.  (If they didn't, they should have.)

All these maaaaany years later, I still notice more about advertising because of that course.  I notice colors, sooundtracks and actions that subtly (and not-so-subtly) drive home the message we're supposed to get.

So when I see ads that show cartoon bears who don't shit in the woods and have problems using toilet paper, I make a note to never, ever buy that product because I find their line of advertising distasteful and stupid.  There were many ways they could've gotten their message across - this wasn't a good choice.

When I hear ads that feature insipidly sweet-voiced singers telling us to drink their magic pink beverage for an energy boost and they'll donate to the Susan G. Komen Foundation, I get irritated at the overall stupidity of the agency who got the account.  Having lots of energy (and being pink, for that matter) has - trust me on this - NOTHING to do with cancer.

And while we're at it, showing your sports car skidding sideways across the TV doesn't show me how cool and sleek your car is.  It shows me you've designed a product that can go fast and lose control at the same time, even with a professional driver behind the wheel.  So thanks, but I'll pass.

Lately there's been advertising for Microsoft Internet Explorer 9.  I know it's for IE9 ONLY because I just looked it up.  It could have been for a laptop or a video game or an animated series.  Anyway, the ad shows all the cool things you can do, create, watch, post, find, and listen to using their product.  My issue is the soundtrack.  Yes, having  thumping, energetic background music was a good call.  But did anyone in the agency listen to the lyrics?

"And it feels like I am just too close to love you", warbles the singer.  Wait so I'm supposed to LOVE IE9?  We're just being introduced.  And yet I'm already too close and I can't love it?

"There's nothing I can really say", continues the song.  Isn't IE9 supposed to help me communicate better?  And now I can't say anything at all because I'm too close?  Or don't love it?  Wait- what?

"I can't lie no more, I can't hide no more, got to be true to myself".  So letsee - pre-IE9, I was lying and hiding and faking myself out with other products?  And now, with IE9 (which, again, I'm too close to and can't love) I can be real and honest.  That's convoluted, at best.

"And it feels like I am just too close to love you, so I'll be on my way" which very much makes it sound like I don't get to use IE9 and I'm walking away without it.  The exact opposite thing the advertiser wants me to do.

While it's not part of the advertising being aired currently, later in the lyrics is "I must leave without you.  You know we're headed separate ways."  Nice going, Microsoft - way to get your customer base locked down.

Now the old Meow-Mix ads ... THERE was some great advertising.  Gosh, those were talented felines ...