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When Parkinson’s is the Norm: A Nuclear Engineer Assists His Wife

Caring Conversation — Per Riggare

Per Riggare lives in Stockholm, Sweden, with his wife, their 15 year old child, and two cats. He trained as an engineer at the Royal Institute of Technology in Stockholm and has been working with nuclear waste safety for almost 25 years. Per applies his professional experiences when caring for his wife, who lives with Parkinson’s disease.

Rajiv: What is your caregiving experience, right now and in the past?

Per: I don’t see myself as a caregiver, really. When I met my wife, Sara, she already had Parkinson’s. It wasn’t properly diagnosed as Parkinson’s until some years later, but the fact that something was different was clear from the beginning. So caregiving is just a part of my normal life. I help my wife in whatever she needs. I do the physical things around the house: ironing, cleaning, fixing the car. Sara does what she can, especially whatever she can do on the computer such as paying the bills, and making sure our life is in order. What I give the most of, I think, is moral support. Sara can’t always take care of herself in the way that she wishes she could, so I end up offering her support in whatever way she needs at the moment. A lot of the time, it’s in an emotional capacity. That’s just ordinary life for me.

(Editor: Some background on Per’s wife Sara: Sara showed early symptoms of Parkinson’s disease while a teenager, though a correct diagnosis was only made in her early 30s. Now aged 47, Sara is a leader in the global Parkinson’s community. With a MS in chemical engineering, she worked for many years in the environmental field. Currently a PhD student at Sweden’s Karolinska Institute, she has conducted groundbreaking research on self-tracking and personal analytical tools for understanding and managing Parkinson’s. Rajiv and Sara have been friends and research collaborators for several years.)

Our situation is rare. Most people develop Parkinson’s over a long period of time, and usually a bit later in life. Couples I’ve met who are dealing with similar illnesses, or this disease in particular, their experience is usually quite different. They often feel like this illness isn’t what they signed up for, rather it’s something that happened to them … and I have to say, they’re not wrong. What a horrible thing to have sneak up on you. But because of that ideology, it puts a huge strain on the relationship. Their dreams and aspirations are now at the mercy of the disease. For me and Sara as a couple, this is the reality we’ve been living all along. Sara is ill; but it’s just how it is. The modifications we have to make are really quite small. When we travel and go sightseeing or make our way around a city, it takes some time, so we just go at a slower pace. We reschedule and raincheck when things go awry, just like everyone else. It’s normal life for us.

To what extent have you been involved or helping Sara with all of her investigations into how to better manage and cope with Parkinson’s?

Quite a bit. We have similar backgrounds in engineering and analytics, so she and I talk a lot about what’s happening with her disease, what her experience is like, and the why behind it. I assist her a lot when she does things like her “tapping tests”. (This measures how many times a person can tap his finger in a set amount of time, which provides an indication of the current level of motor control). I am her ‘control’, as it were. Our similar backgrounds allow us to understand one another on a very comprehensive level.

What is your professional background? Your field of expertise?

I have a masters degree in chemical engineering in a very specialized field, nuclear chemistry. Since 1994 I have been working with radioactive waste with a company called Swedish Nuclear Fuel and Waste Management. I’ve been working with different aspects of nuclear safety and security since the beginning, but today I’m a corporate specialist in nuclear safety.

How have your professional skills and perspectives influenced or impacted your caregiving efforts?

Well, taking care of Sara and our 15 year old has not held me back in my professional work or my career in any way. Perhaps I can’t travel as much, but that’s minor. All in all, I’m very lucky in that respect.

On the other hand, I’ve gotten this extremely deep exposure to the reality of safety and security issues surrounding both healthcare and nuclear waste. It seems that what’s most important is how the people dealing directly react … if they’re doing what their background has taught them is appropriate. My caring for Sara has given me a broader understanding of what our society values and doesn’t, and of how people evaluate risk and their consequences. The deep understanding I have of both caregiving and nuclear safety, the similarities and differences, has given me a richer perspective on everything in my life.

What one piece of advice would you give someone who found themselves in similar caregiving situations?

The simplest and most important advice I can give is that to provide necessary care, you must sometimes put yourself first. In order to give all of you when someone needs it, you have to treat yourself with respect and love. Do what you love, rest, take your space and time when you can.

Interviewed: 20 September 2018, by Rajiv Mehta; edited by Julia Rubano

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