Raising Awareness: Q&A with Robert Kastelic
How can the work of architecture co-exist with degenerative disease? We recently spoke to Robert Kastelic, founding partner of Akb Architects, a Toronto-based residential architecture studio, who discusses his journey living and working with Parkinson’s Disease.
Kastelic, who leads the team at Akb Architects, is a registered architect with the Ontario Association of Architects (OAA) and a member of the Royal Architectural Institute of Canada (RAIC).
His wife Kelly Buffey, who co-founded Akb with Kastelic, first noticed that Kastelic’s left arm wasn’t swinging when he walked, and that his facial expression looked downward. After noticing other symptoms, such as feeling more fatigued than usual, he sought medical advice and was diagnosed with early onset Parkinson’s Disease at the age of 47.
Since his diagnosis, he has been actively working to raise awareness of the condition. Most recently, he was featured in the awareness campaign for Parkinson Canada that aims to inspire and empower other Canadians living with the disease to “find their swagger,” or, in other words, to live confidently and unapologetically.
Kastelic is proudly open about Parkinson’s within his community, as well as the architecture world. He has not only been able to maintain a successful career, but has become an inspiration to those living with the disease.
Tell us about your career as an architect, how you began and what inspired you to pursue a career in architecture.
It started in high school, when I decided to apply to universities to try to become an architect, since I had some strength in the arts and sciences, and I liked building things. I was part of the drama group at school where I built the sets, and I felt really confident with the hands-on and creative aspect.
I applied to the University of Waterloo after high school and went through the co-op program there. Ultimately I ended up working for KPMB after my graduation, which was great. I left in about 2000, I believe. [Akb was founded in 2004.]
Tell us about your experience living with Parkinson’s and how you’ve been able to maintain your career following your diagnosis.
Obviously any diagnosis like that comes as a shock to anyone, I believe. I thought I was young, although I had symptoms prior for a number of years. We just didn’t know what was going on with me, because it’s notorious for being slow-acting, and there’s no test for it. Essentially, if you check a few boxes then they give you a pill to say, “Well, is this working?” And if it does, then they go, “You’ve got Parkinson’s.”
Upon diagnosis, it was obviously a big surprise. We were in the process of the firm growing and developing, and it sort of hits you. You go, “wow, what does this mean?” We automatically think, “should I stop working? What do I do?” You’re sort of just left to your own devices.
So, with the diagnosis, I was fortunate that I didn’t have, say, tremors, that may be typically associated with Parkinson’s. As a movement disorder, it makes your joints rigid. It’s sort of like the tin man feeling in Wizard of Oz. You don’t have oil in the joints, and you’re moving like a bit of a robot, slowly prickling along. It has been a bit less apparent for the first number of years, but as it develops, it becomes a bit more pronounced. Not that it affected work per se—for the last seven years I was just performing our duties, the site visits, etc, and medication relieves the symptoms. So as long as I have a regimen, things are pretty good. I think running the practice with a great team that understands your condition and what works better is helpful: a more comfortable chair, ergonomic things, and making sure that my time is used efficiently.
What advice do you have for others who may be experiencing something similar, or having issues with their health who may need some motivation?
The first thing would be to understand your condition on all different levels; from your family, what your desires and wants are. Especially if you are working, I would be open sooner than later about it. I’m in support groups and a lot of people keep it to themselves for a long time. They feel ashamed, or weak, or fragile, and they fear they’re going to lose their mode of work.
I can understand that, but I would definitely be open about it, because there’s a lot of good medication out there. I would just recommend that they be as open as they can about it, and they’ll realize how much help and assistance is available, and may be surprised by how many people are affected by it.
What do you find most rewarding about sharing your experience with Parkinson’s? Tell us about Parkinson Canada’s latest campaign and what being part of this has meant to you.
Well, I think awareness of it is the big one, considering it’s actually a really fast-growing disease that is being diagnosed a lot more than traditionally. It’s a movement disorder, so I have my own unique walk. I call it the “funky chicken” and they [Parkinson Canada] liked it for this ad campaign that they did, and I got selected for it. I embraced it, and everyone around me embraces my unique characteristics of how I move sometimes.
It’s a lot better with people knowing why you’re doing that, as opposed to thinking that it is something more serious that is creating that motion and mystery, so I was very excited to be open about it nationally. I think once I came out—essentially since the coming out party—I’ve been embracing this as best I can, and moving forward.
Has living with Parkinson’s changed the way you design for clients—for example, those who are also experiencing health issues, or thinking forward to how in the future they (or a family member) may at some point experience changes in their abilities/mobility?
We do a lot of custom homes, essentially. There’s a great impact on how people live at home with any kind of health condition. When we design homes for a diagnosis, we would design them with generous spaces so the corridors were wider, and the bedrooms were generous—where we can make them flow, and they are usually quite easy to navigate.
There’s maybe items like a bigger bathroom. The master ensuite would be bigger than a universal bathroom in a public space. Generally, the formal aspect of design hasn’t really changed, just evolved.
I think the idea of things like exposure to landscape, open high ceilings, wide spaces, have always been our mantra in our spaces. Uncluttered, minimal, or soft minimal.We still have those components, so we’ve only had to modify a few things when a client might ask for the master bedroom on the ground floor.
That’s something that would be considered “future-proofing” or “aging into the house,” so we take those kinds of items, or a future [placement for an] elevator, and keep that in mind when we build it.
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