Jun 14, 2017

Dig deep & show Parkinson's who's boss!

Last week I set out on a journey of a lifetime with two Parkie friends and together we achieved something I never expected I would in my wildest dreams without having Parkinson's let alone with.  Myself, Dan Steele & Paul Bernard cycled Prince Edward Island's Confederation trail from tip to tip totaling 273 km in 5 days to raise awareness and funds for Parkinson's!
We called ourselves the PEI Pedalling Parkies!
We spent over 20 hours in the saddle, we biked through extreme heat, wind & rain.  There were times I honestly did not think I could go on and oddly enough every time that happened I saw a butterfly right in front of me, leading the way.  I've written about butterflies before and their significance to me.  They symbolize a catalytic moment in life and when a butterfly breaks open it's cocoon to take flight, the harder it's struggle is to get free the stronger it will be in flight and the longer it will live.  I do not believe in coincidences and in the moments I thought I couldn't peddle one more turn there was a reason a bright yellow butterfly would appear just ahead of my tire, fluttering forward.  A reminder to keep going!

It all came about in a rather funny story.  My friend Dan used to be a hardcore cyclist, completing the province wide cycling trip over a dozen times in the past, even doing it once in a day (which I cannot even imagine).  He cycled Cape Breton's infamous Cabot Trail multiple times, cycling through mountains and he event spent 7 weeks cycling across CANADA from British Columbia to PEI.  And then like many of us Parkinson's Disease took over, fatigue, tremors, slowness, depression, apathy all the typical symptoms most of us Parkies have to deal with consumed life.  Dan was diagnosed about 3/4 years prior to me and will turn 50 this year.  I met him after my own diagnosis when I started attending the local Parkinson support group.  Over the last 3 years I've as Dan calls it 'badgered' him to get active again, after all like I've said so many times it is the only scientifically proven way to slow progression.  I would ask him to go for a walk, come to the gym with me, give bootcamp a try or to go biking with me.  He always said no, but always seemed grateful I would continue to ask (and likely a bit annoyed I wouldn't stop LOL.  Late last year Dan was in the process of finishing working and going on Long Term disability.  Something I had already done and as I've written before struggled with.  It's a hard thing to give up a career you both loved and worked hard for all your life at such a young age.  I still struggle with it by times and it'll be 4 years this summer since I had to stop working.  Knowing how difficult it was for me I tried to help with a positive spin on it for Dan.  Telling him how there are benefits to not working, like having more energy to be a parent when you aren't exhausted from trying to pull off a days work, being able to take better care of yourself and of course having more energy to exercise and the ability to time  meds being at their prime.  All very true but even I still struggle believing them sometimes.

Pre Trip Interview with CBC Radio's Island Morning Show

So this is when it happened... I opened my big mouth and Dan called my bluff.  I said to him "hell once you're done working you can cycle across Canada again!" to which he gave me a look, laughed and said something to the effect that he'd done little to no exercise the past 6 years and he didn't think that was going to happen.  So I continue on with "OK, then, PEI, you can bike across the province again, hell if you do it, I'll do it with you!"  Never did the thought cross my mind that after 3 years of hounding him and three years of no's to everything from a walk to a leisurely bike ride did I think this man would say YES to this insane idea.  Well, he did just that and I laughed thinking he was joking only to have him the following week start discussing planning the trip with me.  Oh dear... what did I just do?  Is the only thing that came to mind.  I was encouraging him and panicking inside all at the same time in the weeks to follow.  To speed things along I knew when January hit this year that despite my fears about cycling 273 in 5 days with a Parkie body and one that was never a cyclist before was worth the effort when he hit the gym and put his bike on a trainer in his home and started faithfully working out.  And then the tables changed ever so quickly.  I couldn't get myself motivated to get on my bike after a friend lent me a trainer for it.  It sat where I would see it, set up and ready to ride on it mocking me from a distance, I had zero interest in getting on that thing, even though I knew I had to.  So when I would see Dan typically at least once a week the questions on 'did you exercise this week' became his vocabulary not mine.  He was the one hounding me about training for the trip and I was the one saying that I hadn't done it.  In the words of Dan "be careful what you wish for"!

All that being said we put it out there that this was something we were going to do.  We decided it was a prime opportunity to spread awareness about the disease we both live with and how it's not necessarily that image of the old hunched over man.  That young people get the disease as well, and even the seniors that get it don't often appear that way, especially not if their medications work properly.  It was an opportunity to dig deep and push the Parkie limits and show not only the disease who's boss but others that they shouldn't give up.  And it was a great opportunity to raise money so we can offer more programs, services and things to help people in our province that live with Parkinson's.  So we put it out there for others to join and another Parkie friend of ours Paul was the first to sign up, followed by 4 other people who wanted to join us and help support the 'three parkies' on this trip.  We had various others register to ride a day or two and tons of volunteers and donors to help make it all happen.  We hit some training days together as a group and individually leading up to our June 6th departure and we were as ready as we were going to be.

What I did not know when this all started, was just how difficult it was going to be.  Of course I knew it was going to be hard as hell, but I didn't count on how difficult emotionally the trip would be.  I had no idea how much I'd laugh even through tears and pain spending 5 days with this two incredible men and the support riders, getting to know each other on much deeper levels.  I had no idea just how inspiring they and the experience would be.  I had no idea that this insane idea that I never thought he'd say yes to could be life changing, I think for all of us.  I had no idea.  None whatsoever.  And when the day came to head to Tignish on the western tip of the province to start pedalling to the eastern tip I had no idea I was about to embark on one of the hardest but greatest experiences of my life, I couldn't have known as we piled in those vehicles bikes loaded that this trip was going to change lives, particularly my own.  That it would inspire so many people to not give up, to never let anyone, or anything including a disease tell you that you can't...

We did five days, the first was relatively easy (I say that with a giggle) from Tignish to O'Leary was 45km and the weather was great for cycling, the trail was relatively easy on that stretch and we finished day one much easier than I thought.  We had a great time that evening at the Mill River Experience where the resort donated rooms to us, had a beautiful meal together, a bit of vino to celebrate and we gathered in a room, played some guitar and sang.  It was awesome.
Day two we cycled 64km to Summerside, the morning went well it was getting hot but there was a nice breeze and then afternoon hit.  My own personal hell at over 30 degrees with too many uphill battles for my liking.  This marked the first time I pedalled and cried at the same time as the thought went through my head that I was going to die on that trail!  But I didn't, and with the help of our team and even a friend on speaker phone for the last 3km distracting me with conversations about anything OTHER than riding a bike I made it, we all did!  That night was more guitar playing, more food and drink and laughs from our bellies like never before.  Oh the laughs, it was good for the soul!
Day 3 was from Summerside to Hunter River and 46km.  A tough ride with alot of hills, hot and hard, thank heavens there was a long big downhill stretch near the end.  That night we were hosted by a beautiful woman, Sheila at her cottage where she cooked a feast for us, and opened her home for some of us to stay.
Day 4, we were thrilled to have my dear friends and fellow Parkies Cari & Peter join us for the final two days of our trip from Nova Scotia.  I adore these two people and was so glad they came!  We traveled to Morell that day another 64km day.  The forecast was bad, heavy rain and wind suppose to hit in the afternoon.  So we tried to gear up to leave a bit early, but not before we got some cheers and high fives from an amazing group of grade 1 kids from a nearby school!  They met us on the trail, checked out our bikes, asked us questions and then formed a line to cheer "go team go" and give high fives as we cycled by them to start our day.  It was a heartwarming sight and I struggled to hold back the tears.  We made it to Tracadie before the rain hit, and it remained relatively light until Mount Stewart our stopping point for lunch.  By then the rain was hard, the wind was sideways, we were already wet and cold and the idea was tossed around to end for the day and add that 15km to the following and final day and start early.  The thoughts of making the last day longer and not sticking to the plan despite the lake in my sneakers and the stiffness in every joint from the rain and cold were not flying with me.  I said to the group it was a great idea and go for it if anyone wanted to but I was cycling to Morell that day, Dan then stood up and said with a huge smile "I knew you were going to say that and I'm right behind you"!  And with that we were off.  It was a wet, cold and very hard trek to our destination that day.  15km seemed like a 100 as we tried to pedal through the wet trail, even flat or downhill portions were hard to pedal on and were extremely draggy.  By the time we arrived in Morell my stiff Parkie body needed to be peeled off my bike as I couldn't get off on my own by some great helpers and a shower that night was the best thing I'd ever experienced!  We were lucky to have yet another hostess with the most-est Isabel cook us a feast and offer up her home for us!
Day 5, the last day, the final 54km of our trip to Elmira the eastern tip of the Island.  The weather was perfect, sunny and hot but a perfect breeze.  The scenery especially the first part was spectacular and by far the prettiest we'd seen on our adventure so far.  And the hills were never ending, and I mean never ending and the tears flowed multiple times that day as I thought there was no way to go on.  But yet again that butterfly appeared guiding me. We pushed through and not one person gave up and the finish line was so close after our final stop 15km shy of the end for lunch we could taste it.  (maybe that was just the delicious food Maxine provided for us.  We were so spoiled, Jean gave us a lunch feast fit for a king the day before and Florence & Maureen the day prior to that!).

Day 5, departing Morell and arriving in Elmira, the final 54 km's

We had as I mentioned 7 people that cycled (our Parkie three & 4 support cyclists) the entire 5 days from tip to tip.  But we had many others join us for a day or two along the way.  Shown here is the "Parkie five", myself, Paul, Dan and Cari & Peter who joined is the last two days!  During the course of the week we had a total of 20 people join us throughout the week, five of which had Parkinson's, it was incredible!  Our final day we crossed the finish line with 15 cyclists and we had a 16th for the first portion of the day!  Never did we expect to have so many join us it was wonderful!  As we approached the final 2 km of the day with Dan, Paul & myself leading the pack followed by our friends Cari & Peter and then the rest of the support riders we met my amazingly supportive husband and my dear friend Gail who rain 2.5km up the trail to meet us and ran with us to the finish line.  My husband I know worried about me all week, when I told him we were doing this trip I could see the worry on his face, but like always he's my biggest supporter and cheerleader and I am so incredibly blessed to have him and so many other amazing people always rooting for me in my corner.  We pedalled on and you could start to hear the cheering crowd at the finish, a crowd that blew our minds and overwhelmed us.  This trip all came about because of Dan and I wanted him to take the lead and cross the finish first, but in the end our friend Paul was the one who earned the honor.  Paul is more progressed than Dan and I and I'd be lying if I didn't admit we were worried about his ability to complete the 273km trip and even encouraged him to take breaks each day and drive with our amazing support vehicle driver Denis who made the trip possible.  But Paul wouldn't hear of it, he was riding and made that well known.  Paul dug deeper than anyone did, he inspired every single person that cycled over that five day period.  He taught all of us that if you put your mind to something it doesn't matter whether the obstacle is Parkinson's or something else you can achieve greatness, you CAN do anything!  He finished most days at the front of the pack, he put his heart and his soul into this trip, surprised us all and he is my hero!  Words just can't accurately explain how proud I (we all) are of him, words can't express how grateful I am for his spirit and teaching us that nothing is going to stand in his way, teaching us that when faced with adversity you can give up or you can fight on and if you choose the latter you will succeed.  He was a rockstar on this trip and nobody deserved or earned finishing first more than he did.  Tears streamed down my face as he got faster and faster as the cheers from our supporters at the finish got louder and they still flow as I talk of it or watch the video's of our finish.  To Paul, I say thank you from the bottom of my heart for the privilege of cycling with you this week, for the privilege of being your friend and for all you taught us this week!  I am in awe of you!

The finish line was a blur to some degree, so very surreal, so incredibly overwhelming and emotional.  With each hug I held back tears or they flowed without any control.  And as I looked over at Dan, the reason for all this and I reflected on a week of seeing the most giant smile on his face and hearing him laugh harder than I'd ever heard before I knew right then that this week changed all of our lives.  There was a spark in Dan's eyes I'd never seen before, he talked about future cycling trips and reminisced about previous ones.  He was on fire inside and out and I can't help but be brought to tears at what this insane idea that terrified the hell out of me did for all three of us and I think everyone else that participated throughout the week.  One crazy idea brought an entire group together in a bonding experience that I cannot even explain, taught us all things that I don't even know how to properly put to words, showed people that Parkinson's does not need to look like that cartoon image, but rather can be an imagine of strength and courage and determination.  It was all so much more than what I could have ever imagined... I had NO idea.... and I'm so grateful at all of his amazing surprises.

Post ride & a rather emotional recap of the trip with CBC Radio's Island Morning Show

Do not ever give up, dig deep & show Parkinson's
or whatever your struggle is who's boss!
You may just exceed all your expectations, crush all your fears
& have a journey of a lifetime!

The 7 of us who completed all 5 days,
all 273km, all 20+ hours in the saddle cycling Tip to Tip!
Standing - Loretta AKA 'Crash' (Dan's wife), Myself, Paul (my hero), Shawn
Kneeling - Gaylene (who rode in honor of her Dad who had Parkinsons),
Dan the reason for this crazy ride & Roberta!

Local Reporter speaking to us after we crossed the finish line!

Oh, and I should mention we raised $6700 for programs & services for Islanders living with PD!  If you'd still like to donate you can do so at:

Here are some links to some other media coverage we had:

You can see lots of pictures and video of our trip on facebook at: