Sep 19, 2015

Happy 1st Anniversary Parkinsons

The typical first year anniversary gift is paper.  I pondered this and what kind of gift could this Parkie get for my 1st anniversary with Parkinsons?  Some might think tissue paper for the tears?  Toilet paper cause its crappy?  Nah, I'm thinking more happy types of paper.  Like photo paper with some photo's of my amazing family & friends and all the great things I got to do this last year.  Because after all, a year and five months ago (prior to starting treatment) my life really was crappy.  I was depressed because my body was falling apart and I didn't know why and nobody seemed to be able to figure out the cause.  I had my oldest daughter crying herself to sleep often because she was scared that Mommy was dying because she didn't understand why often I could barely get out of bed to walk around.  I couldn't explain it to her because I didn't know why either.  I was scared too.  I was barely functioning and it was horrible.  Today, in comparison to 18 months ago life is good.

And.... apparently Parkinsons really didn't want me to forget I had it on this first anniversary.  I don't think I would have anyways but thanks for the painful reminder in the wee hours of the morning.  The gift of pain & no sleep wasn't exactly what I had in mind, remember, paper?  I was up most of the night extremely stiff and soar and by 4am was in so much pain I had to cave and take a half a levodopa and spent some time laying on the hardwood floor stretching & trying to find a way to ease the stiffness & pain.  I finally was able to get back into bed at 6:15.  Thankfully my oldest daughter got the little one breakfast when I explained Mommy didn't sleep & was soar.  It's rather sad that she understands this and is willing to help Mom out by taking on the role of little Mommy for me.  God love her!  They had cereal & let Momma stay in bed a bit longer & thankfully I when the morning meds kicked in I was ok again.  So thanks PD, not to worry I know you're there!

Bad night & jokes aside.  Today on my anniversary of officially being diagnosed the first word that comes to my mind is gratitude.  Because even though I had some reflection time this week and some 'blah' moments even today, when I think back to a couple years ago I'm so very grateful that I was finally diagnosed.  Finally found a treatment that helps life be more manageable.  Of course I still have days where I'm crashed on the couch or in bed.  Still have days where even the simplest of things can be a challenge, but more often I have good days.  Not days like before I had PD with a normal body when no thought process was required in order to simply get out of bed in the morning.  I didn't need to plan getting up over the course of an hour while I waited for meds to kick in.  I could hold a pen to write or use a pair of scissors with ease and other such fine motor things that I find very troublesome now.  However my 'new' form of good days are incredible in comparison to those dark days when I didn't know what was wrong with me.  Therefore, I am grateful.  I've been able to play with my kids, perhaps not the same way as before after all I can't build luge tracks in the snow in the back yard anymore, but I can still have fun with them.  I've been able to go to events, enjoy friends & family again and for the most part rarely need to decline and invitation because I'm unable to get out of bed and walk.  I may need to time activities around medication doses, but I've become a master of knowing when I'm "on" and when is the best time to tackle daily things in life.  Overall, I'm lucky and therefore I choose to celebrate my 1st Parkie Anniversary!

And how does one celebrate such an anniversary?  Well when you're as lucky as I am two of your best friends know the date of your diagnosis just like they would a birthday and they take you out to dinner to celebrate. 

Odd you say?  Perhaps some might think so.  I however see it as two rays of sunlight that I'm lucky to have in my life making sure that I know they are there for me.  I'm blessed to have many friends, family & supporters in my life including my amazing husband.  But lets face it, a gal needs girl talk!  We all have those friends where we're comfortable to tell all too!  Well, these two likely could use me to tell less sometimes.  Ha! Ha!  They are the only people that know all my inner fears about life with Parkinsons.  Cause lets face it, I'm human.  Of course I choose to see the glass half full and I try and remain optimistic and exercise and do the things that I know will slow progression so I can live a full life with my family.  However I'm also not oblivious to the fact that I have a degenerative neurological disease.  I'm well aware that until a cure is found or perhaps a drug to slow progression that I will have more struggles as time goes on.  I choose to focus on the good, being grateful and staying optimistic but I'm also not in denial.  When I have a bad day emotionally or a day where my meds might not be working so great for whatever reason; and I'm really struggling with things I know that I can tell them I'm scared and they listen.  They don't tell me everythings going to be fine, they don't lie and tell me it's nothing to worry about.  They simply tell me that its ok and whatever I am or going through "we" will get through it.  That is true friendship.  So yes, it may seem odd, but I couldn't think of a better way to celebrate my Parkie Anniversary! 

If you are reading this and you have PD, or any other disease for that matter find someone you can talk to and be open and honest to.  Whether it be a support group, a family member or a friend.  Bottling that stuff up will not make your journey easier it will not make you stronger.  Find a way to get it off your chest so you can set the bad or scary stuff on the shelf and find the joy in everyday, even the tough ones.  I'm blessed to be able to talk to my husband about all these fears as well, some don't feel comfortable doing that and want to shelter their loved ones from the fear.  I suppose in a small way I do in fact do that a little, but I try not to.  I have a sister who is there for me no matter what that I can talk to about anything that bothers me and several other friends as well that are not only very supportive but great cheerleaders and laugh at my often inappropriate jokes!   Two of which don't live near me and I wish we were closer, but I know they are there for me when I need them and are constantly rooting for me.  I also have a great community of new friends and support from my fellow Parkies both near and far.  This blog has enabled me to connect with so many amazing new friends to share in this journey, bounce ideas off and so much more.  The Parkie friends I've met throughout the Maritimes are amazing and provide me with great information and comfort when it's needed.  So how could I not be grateful for all of that, Parkinsons or not?  So find that in your life if you're struggling...

So, I guess whether I wanted it or not (NOT), Parkinsons and I are in it together for the long haul. 
So to my Parkie self... Cheers! 
Here's to many more years of me fighting with you (and trust me I will fight)
and not letting you kick my ass! 
Here's to 'shaking off' the blah days, long nights and painful moments!
Here's to many more anniversaries that I will
celebrate the joy I still have in my life! 
Here's to many more anniversaries where no matter what changes I experience I will be grateful for what I still accomplish!

Here's to 1 year down and many, many more to go!

Now... where's my plastic wine glass? 

And here's where I was a year ago today.... because I found myself doing a lot of reflecting this week.
It still applies.... Parkinsons, you picked the wrong chick to mess with!

Sep 13, 2015

Parkinson SuperWalk 2015 ~ Celebrating "Everyday Hero's, Extraordinary Hope"

This weekend all across Canada millions of people participated in the annual & 25th Anniversary of the Parkinson Society's Parkinson SuperWalk!  The theme of this great event is "Everyday Hero's, Extraordinary Hope" and all the funds raised are used for research, advocacy, education & programs for people with Parkinsons.  Obviously this is a cause that's dear to my heart now.

This was my second year participating in this great event, although last year was a bit odd.  It was 15 months after my body started to break down.  I had been on treatment for Young Onset Parkinsons for over 5 months at the time of the walk and knew because it was working that I had YOPD, however I still had a week to go before my follow up appointment where I'd be given the official diagnosis.  So I was unsure if I should participate and attend or not... but my movement disorder neurologist had told me enough about what would happen if the medication worked and in turn I had the disease so I knew in my heart (and body's new better use) that I did.  So I registered a team rather last minute and some amazing friends & family jumped aboard and off we went.

This year however marks just about a year into my diagnosis, there's no denying I have it anymore.  So this year's Parkinson Superwalk seemed almost like my first and that much more important.  I decided to register as soon as it opened in the spring and put a call out on social media for people to join the team.  Well, let me tell you; that day I had NO idea what was going to happen in the months coming.  13 people registered to join my team without ever being asked.  That in itself is beyond heartwarming to me without a cent of fundraising work being done.  To know that there are so many people out there cheering me on, supporting and loving me and encouraging me to stay strong and keep pushing forward is an amazing feeling.  I have said it once and I'll say it again; although I would have never expected or chosen to have Parkinsons and as scary as sometimes it can be I have gained so much more from this disease than it could possibly take from me.  Invaluable lessons about life, myself, friendship and so much more.  I am grateful beyond words for these amazing people in my life, there's no way I could ever possibly explain to them just how much it means to me and how much it lifts me up.

So as the team was formed it was time for a name.  Since often we see a lot of superhero's at the walks across the country we wanted something fun, hero like and catchy... And then they started brainstorming and "Natasha's Ninjas" was formed!  They went so above and beyond when it came to fundraising it's amazing.  They participated in car washes, yard sales, bake sales, selling tickets on prizes and some even went door to door asking for pledges to support our team and the Superwalk!  OH, and I cannot forget the Pie's for Parkinsons challenge... when I brought that idea to the team not only did they jump aboard but they did it with smiles on their faces and insane energy.  WOW.  My team rocks!  And the result rocked too!!!  I'm thrilled to say that this amazing team of mine raised over $5300! Woohoooo, way to go Ninjas!  I had set a team goal that I thought was far too aggressive of $5000 and a personal goal of $2000.  Both were exceeded!  And to all the people that donated, bought tickets, baked goods or items at yard sales.  Who made pledge donations, spread the word, shared the love, I thank you... From the bottom of my heart....

Natasha's Ninjas, BEST Team EVER!

Custom made team shirts (with my motto on the back) & Ninja Masks!

Prior to the walk starting I was touched when they spoke about my amazing team, about my journey with PD and how I share this blog with the PD community all over the world, how I sit on the board of Director's of the Parkinsons Society Maritime Region and how I'm an official World Parkinsons Blogger on route for the WPC in Portland Oregan in 2016.  Then on the fly was asked to say a few words (normally not an issue for this gift to gab gal).  However as I stood at the mic I was overwhelmed with a flood of emotions and could barely speak through the tears as I made an attempt to say thank you to my team of friends & family.  There was so much more I should have said but I just couldn't get the words out.  Like thank you to all the volunteers in the room, all the family members, friends & care givers of all the other people there with Parkinsons showing their love & support to my fellow Parkie's.  To Dan the President of the PEI Chapter for all he does, for reaching out to me when I was first diagnosed & leading the way to support groups and programs available to me.  So much more I should have said, but the tears wouldn't allow it today.
 Emotional & Oh so Grateful
Then it was time for the walk to get started!  I ran the 3K SuperWalk last year and my goal was to do the same this year.  I was leary as I hadn't been running lately and just had a big week long crash from doing too much with the kids the latter part of the summer.  But, with a little help from my friends and my running team Lorena, Neleigha, Lana & Jeannie (and a few walk breaks for sure) we pulled off the run!  I know I do not need to run, but it's a mental thing for me.  Every year this event comes up that I'm able to run all or even a part of it is my way of saying Screw You Parkinsons!  You will not take me without a fight and I will stay as active as I possibly can to try and slow progression. 

My reasons for everything I do!
Because I am a Mom first, Parkinsons comes second and it always will!
Nobody gets more of me than these two beauties! 
If you'd like to see more pictures of my amazing team visit:

To check out some of my team's Pie's for Parkinsons videos visit:

Article that was in the local newspaper prior to the SuperWalk:

To everyone who made today yet another amazing day, thank you!  To the Parkinsons Society of Canada, Maritime Region & PEI Chapter great job to everyone who worked on this event Canada wide and to all of those that volunteered to make it happen both here in PEI and afar!  Events like this give us great hope, a sense of community and a feeling that we are not alone.
To my team, thank you... I love each and every one of you and appreciate you all more than words could describe.  To my friends & family that cheered me on from a far, sent countless messages of support and encouragement that I know would be with me if they could... Thank you... xoxo