Sep 22, 2016

If you haven't been to the World Parkinson Congress boy are you missing out!

WOW is the word that comes to mind when asked to describe what it's like to be at the World Parkinson Congress here in Portland, Oregon.  Was it worth the 5895 km trip to spend the week with over 4200 people from 67 countries either living with, caring for, involved in, researching or treating Parkinson's Disease?  Absolutely & without question.  AND it's not over yet!!!

I arrived in Portland on Monday evening.  Technically today (Wednesday) is the first official day of the Congress, however I was here for "Day 0", the pre congress.  I will admit my head is already spinning with still two days to go, the information is overwhelming not because the content is extreme but rather there's sooooo many choices for what you want to learn about.  In fact I have myself wishing I had a clone or a travel partner so they could attend opposite sessions than I so not to miss out on any valuable information.
The opening ceremonies were truly mind blowing and I found myself fighting back tears at every turn.  Not because anything about it or any of us Parkies is or should be considered sad but rather that it's so incredibly powerful and inspirational.
The Parkinson's community is tight knit and like no other, the genuine care, concern support & love for one another shines through.  The amazing Parkie's out there with stories of hope, courage, strength, determination & how they find joy in their journey with PD is truly incredible.  The experience is difficult to put into words, other than to say it's empowering, inspiring and very emotional all at the same time.  Brian Grant, former NBA player with Young Onset Parkinson's spoke at the opening ceremonies and he was more admirable with every word he spoke.  I'll write a bit more about him, his foundation & life with PD at a later time, so stay tuned.  We were also in awe when the beautiful Maryun "May May" Ali took the stage with confidence, enthusiasm, honesty & grace.  She spoke of her father the great Muhammad that the Parkinson's community admired and sadly has lost and his personal PD journey.  How he was all about time, and how precious it is.  She spoke of his love for magic and how he would perform his magic tricks as much as possible.  But most importantly she spoke of his courage, his fight and his positive personality towards life & Parkinson's Disease.  I think it would be impossible for there to be a person in the room that wasn't inspired by her address as well as Brian's. 

I also had the great pleasure to meet some other inspirational Parkies.  People who fight every day, encourage others with PD to do the same, challenge, motivate & inspire the entire community.  And I must say aside from how amazing the content is of the various sessions (and there are a ton to choose from) meeting these people who share in the same battle although of various degree's and symptoms as we are all different, is an experience just as if not more rewarding than the congress overall.  It's truly a remarkable experience one I will never forget and cannot urge you all to think about attending next time.  Which by the way will be in Kyoto, Japan in 2019! 

For instance this evening while attending an incredible film night that showcased short films from all over the globe and how people are facing PD head on, I had the pleasure to see the entire story of and meet Andy McDowell.  Andy created a video submission for the last congress called "Smaller" which was one of the first things I showed my oldest daughter Samantha after being officially diagnosed.  I thanked him for that and for his courage to speak up and spread awareness that some of us affected with PD have small children and are not 'old'.  And although not better or worse or in any way meant to compare with someone who is older and their challenges, ours are simply unique when we have little people to care for ontop of it all.  You can view his poem here:  And his film "Switched On" can be found:

Tim Hague Sr. was the Emcee for film night and you may recognize his name as the fellow from Manitoba, living with Parkinson's and the winner of season 1 of the Amazing Race Canada!  He's also a fellow WPC Blogger and it was an honor to meet him in person this evening.  I hope to get a chance to speak with him again before we both head back to Canada.  You can check out his blog & some video links here:

I saw this man's video before one of the sessions this afternoon for the first time.  It was amazing, it came in 2nd place for the video submissions.  This man is Superman for sure!  Living with PD I believe he said 14 years now and rocking it!  He said many years ago his young son told him that he was Superman and Parkinson's was his kryptonite.  He fights everyday and is inspiring people myself included all over the globe!

The beautiful Soania Mathur.  Mother, Wife, Physician, Author, Educator, Ambassador & person living with Parkinsons.  I was honored to have her sign her book I brought along with me.  Ironically she's not only amazing and a Canadian but my family Doctor who thank heavens never gave up on me until we got answers on why my body was broken and her are good friends.

 WPC Blogger and friend Laura Kennedy Gould, Blog: "The Magic Trick - Life with Parkinson's"

For more photo's and information from the Congress visit the A Broken Body's Journey Facebook page at:

And sadly last but not least.  My WPC Buddy suddenly passed away last week.  I was so incredibly excited to meet and hang out with him this week.  We started talking back in the spring and despite how incredible the congress is I'd be lying if I didn't say there was a slight bit of it being bittersweet.  He's been honored with a moment of silence I know his presence is here with all of us and I can say with certainty he is thought of often.  I attended the WPC Buddy reception without you both, shed some tears & wore my Dallas Cowboys hat in your honour.
Jason Arwine, thank you for the inspiration during the short time I knew you.  Enjoy dancing with the angels free of any of PD's struggles.  To you Heather, I'm so incredibly sorry and I still very much look forward to meeting you and hugging you tight.
 RIP Jason Arwine
December 12, 1978 - September 15, 2016

Sep 14, 2016

A Parkie's emotions gone wild!

For those of us with Parkinson's Disease we know all too well what's it's like to have the waves of emotions come crashing at us like a raging sea.  Because the reality of PD is that although most people know the common motor symptoms like tremors, rigidity, stooped posture etc... they usually know very little about the non motor symptoms of the disease which often can be just as bad if not worse.  Loss of sense of smell, bladder & bowel dysfunction, insomnia (that stands out as I write this at 2am), drooling, cognitive impairment and the list goes on.   Problems with apathy, depression and anxiety are extremely common as well.

Now as far as I'm concerned my husband had always tormented me that I was 'cold hearted' because unlike most women I never cried.  It was a bit of a running joke for us and I teased him that he was like my wife because he was the sensitive, more emotional type.  (Shhh, don't tell him I told you how much he cried at our wedding Ha! Ha!)  Well my how times and rolls have changed now that I have YOPD.  I find myself chocking back tears on a regular basis, anything can set me off, a commercial, a thought, a happy thing, a sad thing.  I am always trying not to shed a tear it seems.  I went from being a social butterfly to having social anxiety, it's a real struggle for me to step outside my new comfort zone and be out and about in a new social setting.  I often am hurt by something or someone but have become somewhat of a doormat in a sense allowing people to take me for granted or be insensitive to my feelings for fear of losing a friendship or having to deal with a disagreement.  As I've mentioned before in previous posts, the motor symptoms of Parkinson's are often very well controlled with medications like levodopa etc... but the non motor and particularly the changes in ones personality are tougher pills to swallow.  To have your identity, who you've always known yourself to be change and it's completely out of your control can be difficult and challenging to accept. 

It's an odd situation to feel like a social being that you always were, but yet now have anxiety about social situations which in turn can make a Parkie feel very lonely.  I know that's complicated and confusing isn't it?  Ha!  But that's what it can be like, a constant struggle to remain the person you were before but accept the new person you are now.  To force yourself to get out and about despite the fact that your give up and go has gotten up and left the apathy station.  To not allow yourself to be lonely despite the fact you want to stay away from everyone.  My what a juggle it can be, my head is spinning just typing about it and my logical brain laughs at how ridiculous it all sounds.

Now back to the emotions gone wild.  I've most certainly had a week of a bit of a roller coaster that all of the above can sort of sum up.  I've struggled with a loss of identity from having to give up my career, one which I worked very hard for and loved.  It's been three years now since I've been able to work thanks to Parkinson's and Dystonia.  Although I to some degree continued to mourn that loss I adapted and played some mind games to make it easier to accept.  Like the fact when people would ask me what I did for a living, I would answer that I was a stay at home Mom.  Not a false statement, simply a bit of an omission of the fact of why that was the case.  I had one child in school and one at home with me, nobody questioned it, that thought process and mind game worked for me.  Until.... it didn't.  My sweet 4 year old Izabella, not to turn 5 until December hopped on the school bus last week with her big 8 year old sister Samantha and headed off to Kindergarten.  You'd think after all the screaming and fighting they did all summer and how exhausted their Parkie Mom was from being an entertainment director to them all summer that I'd be the parent screaming for joy that school was back in!!!  Well not so much, rather it was reality smacking me in the face.  PD reminding me that although technically I have been a stay at home Mom for 3 years, that it was a forced situation.  That I can no longer tell people when I'm asked that I'm a stay at home Mom, instead I'm a Mom, a Wife a woman who is on disability and cannot work because I have an incurable degenerative disease, two in fact because remember PD is the gift that keeps giving!

The first day both girls got on the school bus and I walked back into the very quiet house I was flooded with emotions, sad my babies are growing up, sad I am not heading to work, sad that there's no noise and sad at the reality that five days a week, ten months of the year (with the exception of when my husband is home from the opposite end of the country where he works) that I am all alone.  I have been dreading this sadness for months now.  I even got a mini dachshund puppy in the spring because I knew it would help to have a dog, my buddy and I love her and I'm happy I have her with me when the girls are gone.  Now as a week passed putting the girls on the school bus got easier and I'm working on changing my mindset.  I know I'll keep busy I always do.  I have time for my various therapies now (massage, acupuncture, physio, horseback riding etc) that I struggled with packing in two days a week last year when my little one was in pre k.  I can actually get to bootcamp 4 days a week now all the time rather than just when hubby is home.  This is all good... All positive... I simply have to continue to remind myself of that, remind myself that I still have purpose despite not having a "career" and not having my girls home.  Remind myself that I will continue to volunteer and do things that I love on the days I'm feeling up to it.  It's a huge shift in my life, there's no doubt about that.  I am sure I will still have sad days if I allow myself to overthink it much.  But there is still a ton of joy in the journey, even on this bit of rough seas I've hit recently.  I'm confident however that the sun will shine, the winds will die down and the waters will become calm and full of shimmering beauty.

Sometimes the hardest part about writing about my journey is being completely honest.  In order to be authentic about my life with PD I have to admit the bad stuff, the stuff that irks me, the stuff that angers me, that makes me sad.  Discussing the motor complications of PD are easy, but the non motor, particularly emotional symptoms are much more difficult.  However in admitting it one must accept it.  Like Michael J Fox said "Acceptance doesn't mean resignation.  It means understanding that something is what it is and there's got to be a way through it."  And I believe the way through it is finding joy in each day; which is the way I've tried to live each day since first hearing those two words that changed my life.  I will cherish the quiet and look forward to the noise at the end of the day from my beauties.  I will continue to push myself to be more social, to keep busy while finding the balance to not burn out like I have done to myself previously.  I will continue to learn and seek the lesson in each situation.  I will continue to write, to be honest and share the pieces of joy as I find them.  Last but not least, as always I will continue to bask in just how very blessed I am to have the life I have, two beautiful daughters that are my world, a loving supportive husband (and a super cute puppy) and a great group of friends & family that support me.  Yes the seas will get rough by times, but I'll ride the wave until they calm and enjoy the thrill of it all.  Yup, there's a lot of JOY in all that!
My beautiful little family!
How could I not find joy travelling life's road with them by my side?

and of course my new buddy, Xena our 7 month old Mini Dachshund!