“My voice matters”: Parkinson’s caregiver raising awareness

Carers' Corner

Author: Saskia MairPublished: 15 October 2020

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From coping with her husband’s Parkinson’s disease diagnosis to campaigning for people living with the condition, Leslie Peters from Colorado Springs, US, shares her journey as a care partner

Tell us about your experience as a Parkinson’s care partner.

My husband Steve first began showing symptoms of Parkinson’s disease in 2007. At the time we were caring for his mother who had the condition, so when he was misdiagnosed with Essential Tremor in 2010, it was actually a relief. We clung to it for as long as possible – but he was finally correctly diagnosed in 2013.

I was devastated. I’d known in my heart for quite a while that it was Parkinson’s because I’d begun to recognise things in him that I had seen in his mum.

Right now, I consider myself to be Steve’s care partner. He is no longer working, so taking care of himself is his full time job. I try to support him by keeping him as active and engaged as I can. We co-lead a support group that has helped us both tremendously.

What challenges have you faced as a care partner?

The symptom that interferes the most with our lives is Steve’s apathy. It was one of his first symptoms and I had absolutely no understanding of what was going on – he was always very motivated, both personally and professionally. Now keeping him motivated is a struggle and when I become frustrated I have to remind myself that it is part of Parkinson’s disease process. As Steve’s condition progresses my hope is that we are able to maintain good communication for as long as possible.

I think sometimes women are expected to be caregivers, while men are not so much. In our situation, the roles have reversed to a certain extent. Steve was the primary breadwinner so when he was unable to continue working, I took on that role. I also began to manage our finances and do a lot of decision making. It was all new to me, and a very difficult transition.

We suddenly lost two thirds of our income and our health benefits. For Steve, going from an executive position to applying for social security disability was a very humbling experience. Unfortunately, I don’t have the same earning potential as Steve, and as I’m sure you can imagine, it was a very scary time. I have a strong faith and through the love and support of family and friends, I began to realise that if I didn’t channel my energy into something positive, I wasn’t going to survive.

Steve and I downsized a little sooner than we anticipated and moved to a less expensive part of the state. But we have great kids, a wonderful son in law and a beautiful grandson. We have a lot to be thankful for.

How did you start your work as a Parkinson’s advocate?

My advocacy began in 2015 when I was invited to go to Capitol Hill, the seat of the US government, to tell my personal story to the legislators – I discussed discrimination in the workplace. Having the opportunity to discuss policy issues and how they impact people with Parkinson’s was very empowering.

I soon discovered that my voice matters and that people care about what I have to say. I also met retired cyclist Davis Phinney that year, when he received an award at the White House. I can remember watching him and his wife laughing together and realising they were truly happy, even though they were also living with a Parkinson’s disease diagnosis.

At the time Steve was preparing to have deep brain stimulation surgery and Davis offered to speak with him prior to his surgery. That phone call meant the world to Steve. The kindness he showed our family really inspired me to pay it forward, and getting involved with advocacy has been life changing.

Leslie and her husband, Steve.

What has your experience the coronavirus crisis been like as a caregiver?

The coronavirus pandemic has been especially challenging because it has kept us from seeing family and friends. Having Parkinson’s can be very isolating – when you add in the potential health risks of seeing others, it makes things even more difficult.

I am working remotely at the moment, so Steve and I have been adjusting to being together all of the time. Most of Steve’s physician appointments have been virtual and we’re also running our support group meetings remotely. I try to keep Steve positive, but it can be hard to maintain my own positivity. It’s definitely hard not having face-to-face contact.

Caregivers need as much support as possible – not only through having written and website resources, but also through having people as resources. That one-on-one contact is so important. I am always so happy and willing to talk to anyone that is struggling. I know what it is like and I want to help any way that I can.

My message to caregivers would be to take things one day at a time, because sometimes looking at the whole big picture can be overwhelming. I have a favourite quote by US professor Joseph Campbell: “We must let go of the life we have planned, so as to accept the one that is waiting for us.” Know that you are not alone – we are all in this together.

Need to know

Leslie Peters is 54 years-old and lives in Colorado Springs, US, with her husband Steve. Since she started work as a Parkinson’s advocate in 2015, she has served on Parkinson’s Foundation People with Parkinson’s Council as Vice Chair and has visited the seat of the US government, Capitol Hill, to talk about Parkinson’s.

In 2018, she was awarded the Milly Kondracke Outstanding Advocate Award by Parkinson’s Foundation and The Michael J. Fox Foundation. She is currently on the planning committee for the Care Partner Lounge at the 2022 World Parkinson Congress – an event that will be held in Barcelona, Spain.

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