In the past few weeks, (ok months) I’ve had a hard time concentrating. Focusing on something long, or hard enough to see it through has been a challenge. Things like reading, watching tv, sleeping, and writing - which unfortunately includes this blog post - have been apart of that challenge. Thankfully, I've been able to conjure just enough focus most days to get me out the door for some exercise. Going for a walk, run, or slow stroll with my scruffy sidekick always helps to snap me back so that I can focus on something, like writing this blog.
I have started this post a few times, only to abandon it halfway through. So today I’ve decided to rework it instead. Let me begin with a segment of the title: "Friends Who Are Family." And one family in particular, the Winkler family.
Many years ago - 16 to be exact - on a warm September afternoon, in the Caulfield school playground, my youngest son Riley came running up to me. He told me of his new friend Ian, who was coming over and would be staying for dinner.
"Ok" I said, "Who’s Ian?"
Just then this tiny, pretty lady comes up behind him, hand outstretched, and says: "Hi, I’m Wendy, Ian’s mom. I hear Ian is coming for dinner at your house!" And the rest, as they say, is history.
To this very day, Riley and Ian continue to be best friends. They have that unconditional love and support that all friendships strive towards. So it’s no surprise that Wendy and I would become best friends too, along with our husbands Barry and Kerry!
The four of us had so many things in common: the love of hockey, music, travel, accounting, (them, not me!) and family. Ian’s sister, Melissa, was happy to tag along, as well as my other two, Thomas and Melanie. We were all “thick as thieves,” travelling together as families to many places, near and far. (We counted 12 trips!) Our last big trip together was when the shit hit the fan! But before that trip, we had noticed some changes, particularly in Kerry and I.
There’s a lot of backstory to this post, but it’s all very relevant. So bare with me!
The boys were headed off to University. Riley was going to York Uni in Toronto, Ian to Queens in Kingston, Ontario. Barry and Kerry knew our heart’s would be broken when our babies left, so they distracted Wendy and I with the trip of a lifetime to Europe. We would fly to Nice, France to spend a week in our favourite family run Inn, The Hotel De La Darse. Another week was spent in Villefranche-sur-Mer, on the Mediterranean, before renting a car and driving to Barcelona. When it was time to leave Europe behind, the four of us flew to Toronto, visiting my sister-in-law in Cambridge for Thanksgiving. This is where we would meet the boys and Melissa, who was attending Western University at the same time. Our hearts were healed with lots of wine, food, good company, and new sights! The entire experience was beautiful, except for one thing - both Kerry and I were having trouble with our feet, weird!
Our trip started in September 2014, and finished one month later on Thanksgiving. I had been battling “foot cramps“ while running for quite some time. My left foot just wouldn’t flatten out. It was passed off as Plantar fasciitis. A pain in the heel or arch of your foot that is often treated with custom orthotics. When I was away on vacation I would often train for a race. It was my way of staying fit, drinking a little less, and eating well. Kerry would often accompany me on my training runs, as he enjoyed running as well. We would run for many kilometers, solving the problems of the world, or just enjoying the scenery of a new adventure! After our runs in France and Spain, we were both complaining about how are feet were letting us down. Barry and Wendy would comment about how, when they were walking behind Kerry and I at a market, or a museum, or on a trail, or something like that, we had the same limp, gait, and posture. Again, both Kerry and I passed it off as something else, or made some plausible excuse.
Fast forward a couple of years to Fall 2016. Kerry is at a hockey tournament and is having a hard time putting his foot in his skate. He had also lost the ability to hold an edge while skating.
“That was it,” he said. “I have to get to the bottom of this.”
Many tests and tests later, he went for a nerve conduction exam. On July 5, 2017, Kerry was diagnosed, by a neurologist, with ALS. At the time of diagnosis he was 55 years old and had been married to Wendy for 30 years, with their kids well on their way. They thought they had it made.
After diagnosis, Kerry kept his disease very quiet. He was still working full time as a very successful business owner and didn’t want it to be public knowledge yet. They were going to Greece to celebrate their 30th wedding anniversary, and B and I decided we would go with them. The rest, as they say again, is history.
In October of that same year, I was diagnosed with MSA. (Read my first blog post, or listen to the When Life Gives You Parkinson’s podcast episode: “Misdiagnosis“ from January 7, 2020.) Two different diagnoses, same time, both terminal. What the hell is going on?
We are now here in 2021, towards the end of a pandemic no one could see coming. Two years ago, I was given a new lease on life. A new diagnosis of Parkinson’s disease. My life has changed in so many ways. I am grateful for every day I have. In some instances, the pandemic has been good. As a person with Parkinson’s, I didn’t have to say no to social occasions, because there were none. For me, the worst part was restricted access to those I love - family and friends.
I have seen my 80 year-old Dad and his wife Sue, only a few times. Once when he was hospitalized and wasn’t doing well. My favorite aunt, also in her 80’s, I talk to, but haven’t seen in over a year. My brother in New Zealand, who we only just met (next blog!) - well, who knows when we’ll see him and his family again! My sister-in-law and cousin in Ontario, who are like sisters to me, who even knows!?
But the worst was not being able to see the Winklers. We couldn’t expose anyone to the COVID-19 virus, least of all the immuno-compromised.
Parkinson’s and ALS have a few things in common. The most significant is that neither disease has a cure. At least I have some treatment and lifestyle options to maintain some quality of life.
ALS has no cure and no treatment. You would think there would be people jumping in to try and find it, but it just doesn’t happen.
“I am stunned by the reality that I am feeling…..disabled. I am grieving my losses. I want my function back! When will the losses stop? Is this the end of my dreams?” -Anonymous
Kerry died at 12:45 pm on July 5, in the company of his loving and faithful family. They generously shared Kerry's last day with Barry, Riley and I. We laughed, listened to music, looked at pictures, teased Barry, and I got to share parts of this blog post with him. Kerry was sharp till the end. Even though he could no longer speak with his voice, we could communicate with our hearts. ALS is cruel and brutal.
We miss him every day.
Parkinson's SuperWalk is a research funding event that is hosted annually every September. This year, instead of collecting donations for Parkinson's, I will be collecting donations for the ALS Society of British Columbia. If you would like to donate, please click here.
Till next time…..
