I am Cam Penner, and one of my job titles is Organizer of the Ride For Doug. RFD is an annual motorcycle fundraiser in support of Muscular Dystrophy Canada. We have been running it for 16 years now, and have raised over $300,000 for MDC. One of my other job titles is the father of a 19-year-old young man (named Doug) with Duchenne Muscular Dystrophy. DMD is a progressive neuromuscular disorder. The following speech is one that I delivered at the 2022 Ride For Doug.
This brings us once again to the end of the show. Boy, it feels good to be back in person again and able to share it with all of you. One of our goals for Ride For Doug is raising awareness. At the end of a Ride For Doug, we want you to go home and be able to put a face on disabilities, the barriers they cause, and the ways that you can be part of the solution in your everyday world.
This year naturally seemed to point towards equipment. We have really enjoyed the upgrade to an accessible vehicle. It is a shining example of how the right piece of equipment for the right person can transform their life.
As far as DMD families with 19-year-old sons go, we don’t have a lot of equipment yet. Doug’s mobility is outstanding for his diagnosis and age. Probably the most obvious pieces are his wheelchairs. We have a manual wheelchair (named Manuel) that we use to get places that his power chair (Gonzales) can’t go. We have a portable ramp much like the one beside the stage here to get up the front stairs. We have a second one so we can bring it to other places. We have a transition ramp to get over the lip at the bottom of the front door. Inside the house, we have grab bars on all the toilets, a swivelling shower chair, and a stairlift to go between floors. Doug’s bedroom hosts a hospital bed with a power lift and reclines as well as a ceiling-mounted ceiling track hoist. Our family room has a lift-assist armchair. We have a couple of different styles of slings to carry him, and a transfer belt to assist when moving him between places.
Other families have much much more. Ventilators, cough assist machines, floor hoists, and roll-in showers are typical for DMD boys Doug’s age.
All of this equipment does come with a change in lifestyle. For example, on our recent trip to Hawaii, we were going to go sailing on a catamaran. The docks were too far away to walk, so we needed to catch a ride. None of the ride-hailing companies have cars that can take the powerchair, and finding accessible taxis is apparently like finding a unicorn. So we took Manuel instead and caught a Lyft. Once there, we reached the end of the dock to find there was no gangway onto the boat. Due to good planning, we had also brought a sling designed so 2 people can lift and carry Doug over inaccessible terrain. Once on the boat, the lack of armrests on the seats meant that we had to use Doug’s transfer belt (and a person sitting beside him at all times) to ensure he stayed safely aboard. Thanks to equipment, the inaccessible sea turtles were made accessible. When we travel we have to ask a lot of very specific questions so that we bring the right tools for the accessibility barriers we encounter along the way.
In related news, Doug has been approved for funding to hire his own caregiver. While the funding doesn’t cover all of the hours he needs, it’s a great start. This means that he will be able to do things like getting out of bed on his own schedule instead of when mom or dad are able to lift him. He’ll be able to do things that we all take for granted – like picking his own shower times – instead of having it dictated by my availability. Allison and I will be able to go out for the day without having to ensure that one of us is around in case Doug wants to go downstairs, have a snack, or even get out of his bed. It is going to be an interesting new chapter.
This new chapter will come with some new equipment realities. Parents are allowed to use techniques that a hired caregiver can’t. Where I lift him up a couple of inches at a time to get onto or off of the stairlift, a caregiver may not be allowed to. In reality, I shouldn’t be doing those lifts – it’s not great for my back – but WorkSafeBC doesn’t apply to parents. So we will be adding more equipment like sliding transfer boards or maybe floor lifts to our inventory so that Doug can gain more independence.
For those of you who have attended Ride For Doug over the past years, you’ll likely remember that equipment comes at a cost not necessarily measured in dollars. We agonized over the installation of the stairlift in 2016 because it told the stark and crushing tale of how different life is for our whole family. Every time we walk past one of the many pieces of equipment we are reminded that life for us is different. Walking into a wheelchair in the dark stubs more than just your toe. It bruises your already battered soul. We do not look forward to those days when we add to our equipment list. They signal the relentless onward progression of Muscular Dystrophy. They are like mile markers on the highway taunting us with each ability that is stolen from Doug.
And they’re no fun for him either. He doesn’t like using “old man medical equipment”. He’s still (just barely) a teenager. Who wants the indignity of hanging helplessly from a ceiling sling like a pinata when you can still remember when you could walk out of the room on your own?
Some days, I get stuck in these thoughts. I can’t see past the emotional baggage attached. Those are hard days.
Other days, I am reminded of what it is that these tools unlock. His powerchair lets him go where he wants to go when he wants to do it. The ramps mean that places (like the stage here) are once again part of his world. Hoists like the one on Allison’s CanAm mean that she can load and unload Doug singlehandedly – so she can take him on a ride without having to arrange for me to come along. Having the Chevy Traverse has meant that conversation on the road has been much more lively and engaging – as Doug can ride shotgun as an equal instead of in the back like cargo.
When I get into that frame of mind, I’m reminded of all of the people that stand behind our family and who have worked tirelessly for years. Then, sometimes, those same pieces of equipment stand as powerful touchstones that remind me that we are not in this alone.
Your work here today for both MDC and Special Projects will go a long way towards ensuring that Doug and others like him aren’t stuck on the shoreline – but are able to get out there and see the turtles.
Thank you again for your support.
So, until next year. Good night, ride safe and thank you.
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Cam Penner
