Sep 19, 2017

Happy Anniversary Parkinsons & bring on year 4!

Today marks my 3 year Anniversary with Parkinson's Disease, of course I've been living with it much longer than that, and I was told I most likely had Parkinson's in April of 2014 (8 months after things got bad and I already had to stop working) and started treatment for it then; but today marks the day that my diagnosis was made "officially official"

So as always out of curiosity I looked to see the traditional gift on a 3 year anniversary.  It's leather and this is what it says about it:  "The 3rd anniversary is often when a couple is aware of their durability of their relationship, that's why leather is the traditional gift."  Hmmm durability?  So I looked up the official definition of that which is:
noun: durability
  1. the ability to withstand wear, pressure, or damage.

    "the reliability and durability of plastics"
    synonyms:imperishability, durableness,longevity
Now isn't that interesting?  I guess I could use that in the sense that if one with PD continues to exercise our bodies will remain more durable for longer?  It's a neuro degenerative disease so I suppose our bodies must be able to withstand wear, pressure or damage to some degree.  Mentally you most definitely have to withstand those things.  So not a big fan of this years "official gift" of the anniversary I looked up the non traditional gift which is crystal or glass.  Now this makes me laugh cause I use plastic at home for obvious reasons.  Because it really sucks when you drop your glass of wine, but it's worse when you have to clean up glass on top of it!  Ha! Ha!

Alright now that the bad jokes are out of the way...  As I'm in my 4th year of officially knowing it's  Parkinson's I'm living with (and about 3 with Dystonia) it seems in one way like I've had this forever.  I say that as I have definitely despite my best efforts of exercising (the only proven way to slow the progression) and doing various traditional and non traditional therapies (music therapy, horse back riding, etc...) it seems I cannot stop the progression.  In fact I often wonder how much worse I'd be if I wasn't active.  To the outside world looking in when my meds are "on" most people would still never suspect there was anything wrong with me, when they are wearing off however I am now using my cane much more than I ever anticipated so soon.  I've had to get over the mental thing where I only use it at home where nobody can see me.  I've had to endure the "pitty stares" in public when I limp using it at the grocery store or other public venue.  I HATE the pitty stares, I would much rather you simply come right out and ask me "why is it you're using a cane" then stare at me with that "look" as I can tell your wheels are spinning wondering why such a young-ish lady is needing a cane.  My dear friend Caitlin helped me get over some of those hurdles which I know in the grand scheme of things a cane is NOT a big deal compared to some people's battles.  She told me time and time again if I need it use it, to bling it the hell out and go for it!  So I got a blingy cane, red with jewels and a fancy top and it's even monogrammed and says "Screw you Parkinsons & Dystonia" on it!  I digress, I must get back on track... Point being it can be frustrating by times when you do everything they tell you to do to slow the progression and yet you continue to get worse in what feels like a very fast way.  Now at 3 prescriptions totally 24-26 pills a day (I started with one and 4 pills) in order for me to appear the same to everyone when the meds are working, but now there are sometimes I cannot hide it.  That all seems too fast for 3 years.  I'm proud to say I've also accomplished alot to help the Parkinson's community in that short time and when I think of all the articles and fundraising, cycling across PEI to raise awareness and fighting for legislation changes with Parkinson Canada's Ambassador network etc... I sometimes wonder how that could all have happened in 3 years.  But yet at the same time it feels like just yesterday I sat in that room and was told this was my new life.

I had someone send me a message the other day telling me that my upbeat attitude helped them during a tough time recently and they admired my ability to keep perspective in check.  Well I don't think admiration is necessary or warranted but my response was simply that some days are easier than others to be positive but that I tried the 'down in the dumps' thing and it just doesn't help.  And it doesn't, it makes it worse.  Sometimes a good pitty party is required and that's fine throw a fit, I do but don't let it last too long.  Dust yourself off and get up and be grateful.  Yes grateful, no matter what your struggle because there's always someone else out there with a load much heavier than yours.  Not that this diminishes your situation or struggles in any way it's simply a matter of perspective.  I've said all alone since my "D" day that Parkinsons picked the wrong chick to mess with and to "bring it on"!  Now I admit it could bring it on a tad slower than it does and there was no need to give me Dystonia too, but that's just life.  You have to find a way to take what's thrown at you and find or do something positive with it.  Because if you don't you're going to have one long miserable life.  After all Parkinson's and I may be starting our 4th year together but that's 3 down and forever to go.  Would you rather dust yourself off and fight to live well with PD by your side, or lay down and let it crush you?  To me there is no option in those two choices, fighting is the only one.

As I wait to hear word after doing a control test to see if the Neuro surgery team in Halifax will take me as a candidate for Deep Brain Stimulation (DBS) I'm reminded of my former eye rolls and feeling of annoyance every time my med alarm goes off on my phone, 9/10 times a day.  However after a bout with the flu in the spring and then doing the DBS control test I've found a new level of gratitude for that med alarm and the pills I put down the hatch.  When you get a glimpse into what your life would be like without them you quickly change your perspective to one of gratitude.  Thank God for those pills so I don't have to live in such agony everyday.

The long and short of it all is that Parkinson's and obviously Dystonia and I are a threesome that are going to be together for a very very long time.  I can try and shove them in the closet but they are always going to come back out and the energy required to have them in there is far too great.  So I make the choice to embrace them and try and coincide as best I can.  I am my own health advocate, you should be too because nobody knows your body better than you.  Experiment with therapies, think outside the box, be open to new things and research, research, research.  Because you need to be an expert to live well.  A local support group is the best way to start accomplishing this.  But most of all keep on going, don't give up.

So, as today marks a milestone I say you to Parkinson's... Happy 3rd Anniversary and here's to many more years together where I will fight you tooth and nail with all I have, so keep bringing it on cause you still chose the wrong chick to mess with.  I will fight for myself, for my two beautiful girls, for my husband and I will educate and raise awareness to help fight for others...
I won't be defeated that easily....

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