There’s always been something uniquely special about attending that, first-Tuesday-of-the-month (Parkinson’s) PD support group meeting. After having been away (due to COVID) from the rejuvenated vibe that one feels in the presence of one’s peers, many of who are living through similar life challenges…it feels so good to reconnect and chat it up with friends.
I’ve always felt there’s something to learn or a situation to be inspired by as I listen to members of the PD community share how they are trying to ‘live well with their PD’… no easy task, living with a progressively degenerative brain disease….
So, back in early October 2022, I was attending my monthly PD support group meeting, hosted by our ever-caring and oh-so-resourceful fitness /boxing coach, Coach Fiona – she was hosting and facilitating the meeting through the ZOOM platform. This meant that the meeting attendees and participants, once given a link and passcode for the meeting are welcomed from around the world.
One of the guests that Coach Fiona welcomed on a referral to our meeting via ZOOM was a woman from Gander NFLD, named Koren. The meeting took its’ usual path with round table introductions and occasional updates from the month before the meeting. As the focus of the meeting came to Koren, she asked the group if anyone was aware of symptoms being treated with the use of Botox being injected in the client. I mentioned to her that my wife has had Botox treatment for years to treat her neurological condition, dystonia (muscle spasms and cramping in legs, back, and neck) plus a friend of mine is a DJ in the USA and has had the injections in his voice box. He’s announced that it was successful for a certain timeframe before he had to get another dose a few months later- a normal occurrence for Botox treatments.
So, within a few days, I assisted in connecting them both. Koren was extremely thankful–so much that she wanted to make a donation to the charity that I’d been speaking about and promoting at the support group meeting, The World Parkinson’s Program ( I was promoting our fundraiser 5K Walk that was coming up in a few days, October 16th) and even so much more, that she wanted to put together a 5 K Walk Team in Gander NFLD to walk the 5K and donate all proceeds to our charity (she researched what our charity does–provides for free around the world for people who cannot access or afford PD meds, education material, exercise programs, and assistive devices). The only catch was that they couldn’t walk on the same day as us in Toronto on October 16th but they’d walk on October 23rd.
I was completely taken aback and said, for sure, go ahead and walk the 5 K in your area…the fundraising doesn’t end until Nov 14th. So she put together a team and with her good friend Kim ( Kim’s father has had PD for 24 years) started asking for donations in their town and surrounding area..they also started making shirts and banners to promote their walk.. their team name became known as the East Coast Warriors…
While the teams in Toronto continued with their fundraising campaign, the East Coast Warriors picked up their fundraising momentum, with the accumulative donations coming from Toronto and Gander NFLD all going to the World Parkinson’s Program.
The Toronto Team(s) consisted of friends and family – some were first-time 5K Walkers, while others were long-time friends from the various gyms and charities I have belonged to. In total, the Toronto team consisted of about 12 people….they’ve always been there for me and they knew how much I counted on them..
Well, October 16, 2022, soon came and it was time to share this special 5 K Charity Walk together.
I was extremely excited that my walking skills and timely pace had earned me the position of Team Anchor – it wasn’t until I saw the street cleaning custodians, sitting in their street sweeping vehicles about 20 feet behind me that I realized that being tagged as the Team Anchor, it was the Team’s polite way of informing me that as the anchor I’d be slowing the others down.
I began to second guess why I felt the need to purchase the 3 gold star-shaped helium-filled balloons, the day before the Walk – remembering the 5K Walk in 2019, one of the 5,000 people walking amongst the herd of walkers had the bright idea to tie a helium-filled balloon on their hat – a very creative idea to show your team where you were, amongst the crowd.
Nonetheless, whether I was at the front of our Team or at the back, of the 5,000, I could easily be located..that even played true at some of my most private personal moments.
As we approached the starting gate for the 5K Charity Walkers, we found our pace and confidently headed along our route, encouraged on by groups of supporters, bands, and dancers….and the strategically placed water/port-a-potty stations.
I was quite surprised when my brother Brian made the 1.5-hour trek to the race and was able to be by my side through the entire Walk..we hadn’t had the opportunity to chat for this amount of time in quite a while….
The World Parkinson’s Program Team was in good spirits for the entire walk – we checked in on each other as we passed each distance marker of the 5 K event…we also joined in with the singers and dancers that flanked our route.
While we were approaching the halfway mark of the Walk, I mentioned to Bri that on the following weekend, Sunday, October 23rd, in Gander NFLD, a team of very energetic local and surrounding area residents, were going to also take part in a ‘virtual’ 5K Charity Walk / Run Fundraiser, with all their funds raised, going to the World Parkinson’s Program (WPP) – they registered their team name as The East Coast Warriors.
I mentioned to Brian the chance meeting I had with their captain, Koren Snow, while we were participating in a PD support group meeting via ZOOM, a couple of weeks earlier.
As Brian and I picked up the pace of our walk and discussed further all the good the WPP is doing around the world and what the long-term goals are for the charity, I just blurted out that I’d love to travel to NFLD and join the East Coast Warrior team there – Walk / Run the 5K with them as a thanks for all they’d done to assist our charity in such a very short time. I thought it would be great to show up on the day of the Walk/Run as a surprise but then decided against it, in case their plans were sidelined or I came into a problem as I’d be transporting my meds in gel packs that required refrigeration. I also was quite apprehensive about flying having only flown twice since 2015 and I could easily see myself being overwhelmed traveling on my own.
Those premature fears and lack of confidence in my capability were immediately smothered when Brian said with heaps of assertion, “Let’s make it happen…I’ll join you”.
Those few words of brotherly support, love, and kindness said so much. They still ring loudly in my ears as I sit here and recall that life-changing moment in our lives.
Ok, once I came back down to earth (after thinking that we may be able to make this happen) we realized that we needed to ensure our lives wouldn’t be disrupted if we were away for a few days. My wife was having cataract surgery the day after Brian and I walked in Toronto. Would she be able to manage on her own around the house while checking in on her Mom if we left 5 days after her surgery? Fingers crossed.
Brian had a reading week from his teaching job and his kids were self-managing…
Brian reassured me, once again, that we’ll make it happen, with a bonus…his wife works with Air Canada so he’ll see what deals we can get.
These last few paragraphs of our discussion about ‘Going to Gander’ all occurred as we walked ‘side by each’ through the last couple KMs towards the 5K Walk Finish line.
And then the emotional floodgates opened.
As our World Parkinson’s Program Team rounded the last corner and made our way towards the finish line, alongside many other charity walkers, I caught a glimpse of my long-time friend Gary- former coworker, fellow Rock Steady Boxer, and fellow PwP. Gary said he would try to make it to the event because his Running Team was also participating in the 1/2 Marathon. It was so good to successfully cross the finish line with our team and then see Gary at the same time. I was so overcome with joy, that I just let the tears flow and hugged Gary, holding him close as I reached over the fence barrier that separated us.
With that ‘Walk’ completed and everyone safe and accounted for, the 12 of us got together for a ‘thank you and congratulations’ breakfast at a little restaurant just down the street from the 5K Charity Challenge finish line. It was so nice to finally sit down after months of fundraising and trying to promote the event to support the World Parkinson’s Program.
The next couple of days, Brian and his wife took the reins for seeing if our plan to visit the East Coast Warriors was doable. I looked into whether or not my wife would be ok on her own, 5 days after her cataract surgery.
I contacted Koren and asked her not to say anything to her team members nor to anyone at the WPP in her usual fundraising conversations, that Brian and I were looking into joining the East Coast Warriors on Oct 23rd as they walked or ran their 5 K. Nothing was confirmed yet and we didn’t want to mess our plans up. By Wednesday the 19th, we had our plans locked in and we let Koren know.
We got some great last-minute stand-by deals and let them know in Gander…that blew the roof off the town…and the townsfolk amped up a spectacular welcome for us. They’d already made t-shirts for their Walking Team plus they’d constructed banners to highlight the 5K route.
We didn’t use any charity donation funds for covering our expenses, it was strictly our ‘coin’. We just felt this trip was something we needed to do, thank them for all they’d done for others around the world by helping the charity – they prepared everything and raised an incredible amount of generous donations in a very short time.
During our correspondence with Koren and her Team’s co-captain Kim, in the days before we were about to leave for NFLD, we learned that there were many residents in Gander and its surrounding area living with PD who wanted to chat with me about my Parkinson’s and how I was treating my symptoms. Kim’s father Pat, for instance, had been living with Parkinson’s for 24 years – his wife Reta (Kim’s Mom) had asked beforehand if I could find the time to chat with Pat for a few minutes. It sounded like this trip was taking on a new meaning. I was thrilled to get the opportunity to chat with members of our PD Community.
Knowing that my brother was my travel companion and standby care partner, I was able to give all my attention to making this ‘happen’.
So, we were booked for a 6:30 am standby flight to St Johns NFLD on Saturday the 22nd. I tried to adjust the timing of my first dose of daily pump-fed meds.
….oh before I forget, before we could leave on Saturday morning, I had to scramble on Friday to get a travel letter from my Movement Disorder doc – I had to have medical authorization to transport my gel meds and my pump – that became an intimate and rather thorough ‘body check’ before checking into the boarding area…
The flight was smooth and uneventful. We picked up our spacious rental at the airport and Bri drove the 4 hours to Gander, arriving by late Saturday afternoon. It wasn’t just a 4-hour drive with Bri. It was a brother-to-brother chat about life while taking a step back in time as Brian took me through his experience many years ago as a student landscape artist along the east coast of Canada. He pointed out all the odd and peculiar rock formations along the way, a truly amazing landscape. After 4 hours, we checked into our hotel. We took a few minutes to get some rest and I double-checked to make sure my meds were on schedule and refrigerated properly.
I’ve gotta say over and over, my brother Brian was fantastic, for the whole trip, the early morning flight, the 4-hour drive to Gander, and making sure we got about an hour’s rest before we were picked up by Koren for an amazing ‘Welcome to Gander Dinner’ at her place with friends and family, yes that same woman I’d initially spoken with at our PD group help chat a few weeks prior – the woman to whom I am eternally grateful for, for her arrangements of the fundraising by the East Coast Warriors and for welcoming Brian and I.
Koren spread the word through the Parkinson’s Community that I was coming to town – there appeared to be a larger than normal concentration of PD folks in or around the Gander area…many who had been diagnosed yet had been essentially left to advocate for themselves through the year while seeing their PD doc once every 6 months or even once per year. They had access to meds but there was nothing set up for them to participate in as in programs or social gatherings. I was treated like someone who had the answers to all their questions, the person who could give them the ‘hope’ they’d been seeking. Meanwhile, I was just a guy with PD coming to town to pay homage to some amazing, supportive people.
So, late on Saturday afternoon after our rest, Koren picked us up from the hotel and drove us to her family’s place (husband and 3 early teen boys) where we met the family and many people from the neighbouring area. We all sat down for my first NFLD dinner – Moose stew, which naturally came with plenty of laughs and questions, oh yes, lots of questions about Parkinson’s.
Koren had so many questions and concerns – they were not so much about PD and how my life was living with PD but her focus was centered around questions regarding the lack of treatments and programs for the residents of NFLD who have been living for years with Parkinson’s. “Why ?”. There were so many ‘why’s and just as many ‘why nots’.
We continued to discuss what I was learning was a very sad treatment of the PwP by the NFLD health care system.
I also learned something that I had initially overlooked – Koren was not leading the East Coast Warriors for the glory of being recognized as a champion fundraiser – I’m guessing that’s been the easiest task she had. Koren’s biggest challenge has been dealing with the provincial government and the Parkinson’s association – they appear to focus on whatever it takes to keep the purse strings pulled tight, versus sitting down with Koren and asking what can we do to assist the PwP in NFLD. Hopefully, in time, they’ll come around. They better act quickly, because Koren has no intention of waiting.
Koren is in this for the long haul, for the little guy/gal, for the isolated, for the ignored, and for the forgotten. Koren sees an ongoing need for all the PwP and their care partners in NFLD.
After dinner, one of my old boxing friends Coach Lita Mae Button (she was now operating a Nigerian Dwarf Goat farm www.buttonadventures.com 2 hours from the Gander area) said that the people of the NFLD province were left to fend for themselves when diagnosed with PD. Our visit was like a blessing to them that came down from the ‘heavens’ (and Bri and I were treated as such) with lots of questions.We left late – we were dropped off by Koren…we were both exhausted from the extra long day and knew we had to get a good sleep so that we’d be prepared for our 5K Walk the next morning.
Unfortunately, I didn’t sleep well Saturday night – my mattress groaned and creaked with every toss and turn and the voices I heard in the hall sounded like they were at the foot of my bed.
When I did my morning routine for flushing my med tubes and hooking up to my portable pump, my meds felt like they’d failed to ‘kick in’ after the usual wait time of 50 minutes.
I was freaking out (in my head) wondering what I’d do after promising to join the group for the Walk. I knew I had no choice but to continue with our plans. So, the first thing we did was head down to the hotel dining area – I walked at a snails’ pace shuffle to the dining area, with one arm outstretched, touching the wall along our route, to steady my balance, allowing the other patrons of the hotel to pass me safely as they headed to breakfast.
As we entered the self-serve area of the dining room, I felt like all eyes were on me… I did a quick zipper check and ‘all good’…it must have been the extra cautious pace I was walking, with Brian by my side guiding me… I was all tensed up.
He got me settled at a table and headed off to grab some breakfast for us both. Under normal circumstances, I’d try to go to the buffet and serve myself, however, this is one of those times when living with Parkinson’s can mean accepting help from others when help is offered….pride took a meaningful rest this time.
And my oh my that was a good decision … I started to relax and joked with the dining room attendant, feeling less tense.
The breakfast hit the spot as we rushed through our meal, keeping in mind that we had to go back to our room at the opposite end of the hotel – I was still walking at a slower-than-expected pace.
Of course, not helping things was the fact that my mind was still scrambling – thinking about all that we’d done in the last few days to get us here and all the efforts that the people of Gander had put into making this time so memorable….and trying to figure out how we could still make it work…mind you, that’s what was going on in my mind as we shuffled back to our room….Bri just stayed silently by my side and didn’t walk ahead, which would have made me feel more uncomfortable.
When we got back to our room, Brian freshened up in the bathroom while I said I was going to just put my head down on my bed and relax till he was finished and ready to leave. Brian finished up and started to prepare for what he thought he’d need to wear for the walk. As I got up and headed towards the washroom, I felt a surge of energy come over me.
Once I freshened up, I tried a few stretches in the bathroom and could feel incredibly ‘free’, not chained to that anchor that I’d been dragging around the week before in the Toronto 5K Charity Walk.
I stepped out of the washroom and got Brian’s attention…and said “look at this”…my limbs were loose and free and I could control my balance and body movement. Brian was completely caught off guard as was I…I’d never experienced such a dramatic change for the better in my movement since I’d been using this procedure for administering my meds….I think the poor sleep, and all the stresses I’d put on myself that morning, hampered the effectiveness of my meds until I finally relaxed.
“Let’s go for this ‘Walk’ Bri” !!
I was so pumped up and couldn’t wait to meet the Walkers on the route the people had selected ..Cobb’s Pond Rotary Park
When we arrived at Cobb’s Pond there were about 60 people all dressed in their East Coast Warrior 5K Walk shirts, waiting for Brian and I …I was so overwhelmed … no sooner had I arrived there, that Kim was quick to get my attention and introduce me to her Dad, Pat. I met his wife Reta and the 4 of us talked for a few minutes …when the Walk Marshall Lita Mae, announced that I was there to join them. I thanked her for the introduction and I said I’d like to start the walk off with Pat and his family and I’d join the others as they came by for a lap…. I felt it was so important to spend more time with Pat and it turned out to be just right….Brian walked for a while with the group, then joined us… Pat was so pleased that we had some time together and let the group know he had not walked this distance in 4 years…he, being so happy and thankful that I’d spent some time with him.
We had a great time that morning and into the early afternoon – the weather was fantastic for the Walk (Walkers took turns carrying a couple of Lita Mae’s goats, Elvis and Prescilla) and just right for the social event that followed…Brian and I met so many new faces – politicians, towns folk, Parky Folk, a couple of goat folk, more town folk, the same 2 goats again – everyone sharing a ‘Smilin Gander Greetin’ with us.
As the Welcome to Gander gathering continued into the early afternoon, Lita’s 2 Nigerian Dwarf Goats were getting lots of attention – kids and adults were kissing the heads of the very obliging goats, as they picked them up and coddled them in their arms, carrying them amongst the rest of us at the gathering. The little goats loved the attention.
For the record, Brian and I turned down a few offers to be carried around … I think our willingness to participate was overruled by our weight differential.
It felt like we were attending a family reunion – the kindness of family welcoming back Bri and I.
I said a few words on behalf of the World Parkinson’s Program, thanking Koren for all that she did for the WPP during this fundraiser and I presented her with a plaque.
Then the lunch food came out (it was a fabulous spread of homemade cooking – quite a lunch !).
Brian and I were ceremoniously entertained and took part in becoming Newfoundland Screechers ….2 local performers Ev N Rude aka Anne Marie and Greg Blumer (Happy 40th to you two), included Brian and I in the very interactive performance which included making and wearing ‘Gumby hats’, ( being a Monty Python fan), joining the makeshift band in performing ( with Craig on washboard, Brian highlighting his dance moves and myself, playing some oh so mean percussion ..) I’ze Da Buys…lots of laughs, thanks!
As an encore, Brian and I were welcomed to ‘kiss the cod’… COVID-19 protected…
I may have gotten a little too amourous …I’m blaming it on my Parkinson’s.
It was a fabulous time and I met so many people from the PD community who drove from the surrounding area to share a few words with us.
By mid-afternoon, Brian and I headed back to our hotel – a good decision by Bri was that before we grab a quick nap, we pack up what we would not need for the next 24 hours.
After our nap, we headed out to another dinner invite…this time we dined at a neighbour of Koren’s–Tina. More folks from town showed up and made one heck of a feast…cod was the meal that night plus some remarkable dessert (I never got the name of it). Koren even cut up my food for me too…she has the same challenge swallowing her food…all sorts of stories and laughter, Brian felt so at home there, turns out some of the locals recalled the place and when Brian had visited NFLD when he used to paint landscapes as a student 20 years ago or more.
It was a magnificent time sharing the evening with the wonderful people of Gander.
As we talked into the early night (we had to be up pretty early to make our flight back to St Johns for 12 noon the next day) we kept an eye on how much money was being raised for our charity the World Parkinson’s Program( fundraising campaign was still on till Nov 14th)…
After dinner, out came a guitar, then a second one, then the songs … I just had to join in ..not even worried if my PD fingers would behave… so I joined in with the playing (strumming along with the chords and having a grand time). It had been quite a while since I’d played in front of that many people. Such a relaxing time with new friends.
The next morning we had to leave the sleeping city of Gander and its caring residents before 6am to make the 4 hour drive to St John’s and be there in advance of our 12 noon flight back to Toronto.
It wasn’t the same 4-hour drive we experienced 2 days earlier. We were driving during the time when the darkness of night was transitioning to the minute-by-minute sliver of a new days’ sunlight appearing ahead of us…. Prime time for Moose to appear majestically in the shadows of the roadside or dashing from the darkness in an attempt to cross in our path.
Apparently, it is quite common for moose to cross stretches of major highways, in this area, at this time of the day. We took heed of the warnings our hosts gave us the night before.
It was a silent ‘white knuckle ‘ ride….while we stuck to the speed limit or less on the Trans Canada Highway, watching the shadows casting the oddest shaped moose that our vision and imagination could conjure up, our vehicle would momentarily rock as loaded lumber trucks would pass us….just another day at the office for those drivers.
After about an hour, the sun rose and pushed the roadside shadows back into the dense forest that lined our route, ….I waved goodbye, for now, to the imaginary moose….we’d soon arrive at St Johns.
We pulled into the St John’s airport rental parking with plenty of time to spare….enough time before our 3-hour flight back to Toronto to grab a hearty meal and a ‘drink’.
Finally, we had enough time (45 minutes) to relax and chat. We immediately spoke of all we experienced over the last couple of days and how nice the people of NFLD are – so kind, so caring and the core of what makes a true friendship.
While the initial intent of the trip that Brian and I made to Gander was to give thanks and express our admiration for all that the people of NFLD had done, showing that kindness has no boundaries, we found that they exhibited these special qualities, despite the hardships and unreasonable conditions that living with such a relentless disease can conjure up.
I’m so impressed with all that Koren is doing and planning for the PwP in NFLD. While she may encounter elements of resistance along the way, her determination and willpower will serve her right.
I’m looking forward to being a trusting resource for her as she assists her fellow PwP in their goal ‘to live well with their PD’. I’m hoping the World Parkinson’s Program is able to maximize its support for Koren and the East Coast Chapter of the WPP, for she is definitely an inspiration for us all. Koren will get things done – a true blessing.
As Brian and I finished off our lunch and headed towards our departure gate, still with plenty of time to spare, and riding high on the dialogue we just shared, we heard over the PA system “Last call for Brian McPhee, last call for Shane McPhee”….apparently someone gave the ok to board 15 minutes earlier…or maybe, just maybe, someone didn’t want us to leave NFLD.
As we boarded the plane and walked down the narrow aisle towards our seats in the back row, we could feel the eyes of the early-boarded passengers piercing through us over their masks. There were only two smiling faces on that plane before we prepared for take off. The ‘boys from Toronto’ had all the reasons in the world to be smiling, for we had witnessed and experienced how everlasting memories and friendships are created…for starters, you may just want to keep your calendar clear on the first Tuesday of every month….we miss you NFLD. Thank you, dear friends.
Used by permission of the author.