Giving

My wife noticed my left arm was not swinging when I walked, and my facial expression looked down. I had some droopiness, or what’s usually called masking. I went to our family doctor, but she didn’t have much to say about it. Then, a few things that seemed small and unconnected started happening, but I wasn’t worried. Over time, they didn’t go away, and my wife, Kelly, urged me to go back to our doctor. For example, when Kelly gave birth to our son at the age of 45, our miracle child, I was happy but also realized I wasn’t able to experience joy, or at least that rush of happiness and love that I expected to feel as I did with our firstborn.

My movements also changed enough that people asked me if my back hurt. I was moving as if I was injured. I felt fatigued and lacked motivation, which was unusual as I’ve always been pretty driven.

All these little things together, well, I thought were normal. I thought I wasn’t feeling great because I was getting older, sleeping funny, not doing exercises, or just being busy juggling life, work and family stresses. But the symptoms got more intense, and then I was referred to a neurologist. Right away, the neurologist said, Check, check, check… all symptoms of Parkinson’s. They ordered some tests, and he basically said, Take this medication; if you feel better, we’ll know pretty definitively that it’s Parkinson’s. I was officially diagnosed when I was 47, but the symptoms had already been around for at least three years. The appointment was brief, and I didn’t have much of a reaction. I was probably in shock.

I was told to take the medication and return in six months for more checkups at St. Michael’s Hospital. I told Kelly, and we both started researching, looking for more information to better inform ourselves. Although I had to wait quite a while, we found a specialist at Sunnybrook Health Sciences in Toronto. He and his team have been giving me excellent care ever since. They do regular check-ins with me, along with cognitive testing. It’s been helpful to ask questions to two different doctors who specialize in this.

My wife and I have experienced many losses and challenges throughout our lives. But we have always focused on moving forward and working together. We really complement each other. We work together professionally and have a family. So we’re partners in everything, including Parkinson’s.

At first, we looked around for information, just trying to understand what to expect. We needed to determine how this would impact our family and architecture practice. At first, especially at work, I kept things quiet. We were becoming more and more successful and doing work we loved. If people knew about my diagnosis, I worried it might shake their confidence. So we adjusted our home routine and business structure to ensure every person who depends on us continues to get the best of what they need from each of us.

I felt more comfortable coming out after that. I thought if I was not open about it as my symptoms became more visible, people might assume something else was going on. Being able to share my diagnosis with my family, friends and the people in my professional circle and then getting on with the work at hand has helped me maintain my confidence.

Sometimes, I joke, ‘I’m not dead. I’m still here… I can work with this.’ That perspective keeps me focused on doing everything I can within my current abilities. Some things have gotten more challenging, but I still push myself to do as much as possible and am transparent about what I can’t do.

My family supports me and works with me when I need help—like buttoning up a dress shirt or taking a break. My son even stands to the right side of me now. As you can see from the ad, my left arm swings a lot when I walk. Parkinson’s is the new normal for our family; we’ve learned to adapt, and I feel like I am living a very full life.

I just joined a support group after my wife suggested it would be helpful to talk to other people living with PD. Sharing has been so helpful. We aren’t doctors, but the advice around certain things is valuable. It’s the little tips you can only know if you’ve been there. One thing we all have in common is the idea of ‘coming out’ with Parkinson’s. Some people haven’t shared their news except within the group. Others are farther along and have shared it. It’s a safe place to talk through that kind of stuff.

There is a tendency to retreat from society. I encourage anyone newly diagnosed to stay closely connected with family and friends. In the first few years, I was afraid to share my diagnosis. When I finally did, I felt a huge weight lift. I felt liberated. The secret created so much anxiety I hadn’t realized how much stress it was causing me.

Also, finding ways to stay active and get outside. For me, it was getting our puppy, Finnley. Having a dog forces me to get out and walk, which is the best form of exercise. I always feel better after a walk, no matter how my day has gone.

Shooting the ad for Parkinson Canada was a totally unexpected opportunity. My walk has become unique, and I like that the ad celebrates that and makes it cool. The experience of shooting the ad was really positive — it felt like everyone was excited to be doing something good, and I’m energized knowing I am helping bring awareness.

Over time, my gait has really changed. I can swing my arm when the medication kicks in to keep up the momentum when walking. I’ve always been a fast walker, but now I have a more distinctive walk. I’d argue that everyone has a specific walk, like a signature, but with Parkinson’s, mine is much more apparent. I call it the funky chicken walk, which may look odd to others but feels normal and even good to me.

I could have let this new walk embarrass me, but walking is an ideal exercise, so I keep at it. I like to walk fast. I want to push myself. The idea of the swagger is about owning my walk and feeling good inside my body.