Claudia Revilla and her husband Carlos Revilla
María L. De León, MD, and best friend Jan
Soania Mathur, MD, and her husband Arun Mathur
The community has shared a Parkinson’s disease (PD) diagnosis can entail more than just having a movement disorder specialist as part of your care team. Care partners — whether they are spouses, a family member, an adult child or friend — can play a major role in the well-being and medical care of a person living with PD.
In a recent Men’s Health exclusive interview, our Founder Michael J. Fox, who has lived with PD for three decades, reflects on how he came to accept his Parkinson’s diagnosis through a mutual understanding and love with his wife Tracy Pollan:
“And then sometimes I get moments when I think, This isn’t normal. This sucks. But then to have someone say, ‘That’s normal. And I’m okay with that.’ Oh, okay—she says it’s normal, and she’s okay with it. So let me rethink it. It’s kinda like if you’re walking along with someone and you’re wearing a silly hat, and you look over and they’ve got a silly hat on, too, you go, ‘Ah! Regardless of what anyone else thinks, we both think this silly-hat thing works.’ Just to have a comrade. It’s so much more complicated than ‘It’s a great marriage.’ It’s a great understanding. It depends on mutual goodwill and mutual love and mutual concern. I mean, the nightmare is, you look over to the other person when you’re dealing with this tragedy, and they’re not there. They’re on a phone call somewhere. But if you look over and—they may not have a smile on their face, but they’re there. It means everything in the world.”
In honor of National Family Caregivers Month, The Michael J. Fox Foundation (MJFF) is sharing insights and stories from the experts — Patient Council members and their care partners — who offer advice on how to care for each other especially during an unforgettable year of challenges like 2020.
Diagnosed with young-onset PD at 45, Claudia Revilla and her husband Carlos Revilla of Peoria, Illinois, share how they face life’s hurdles together and raise their family of two boys:
“Parkinson's disease took us by surprise 10 years ago. All our plans changed. None of us signed up for this. My husband has taken this challenge with love, patience, and planning, lots of planning to allow us to continue enjoying life with our sons and always putting family first, not Parkinson's.”
Known as the “Father of Cable Sports” and Founder of ESPN — Bill Rasmussen who was diagnosed in 2014 at 81 — shares how a cross-country move to be closer to his family has allowed him to manage his Parkinson’s:
"I live in Seattle now with my amazing daughter, Lynn, a registered nurse and her incredible family, who have been on this journey with me and without whom this Parkinson's mystery would be a lot harder to tackle.”
Diagnosed with PD at 27, Soania Mathur, MD, and her husband Arun Mathur have taken on parenting three girls and loving each other unconditionally for over three decades with and without Parkinson’s:
“[Parkinson’s] can take over every aspect of life and have a significant impact on relationships. For this reason, we have made a conscious decision to not allow Parkinson’s to define our lives and most importantly, our relationship. We concentrate instead on those pillars that are the foundation of our marriage. We are much more than a person living with PD and their care partner.”
Fellowship-trained movement disorder specialist and person living with Parkinson’s María L. De León, MD, is no stranger to understanding the care partner experience as she herself took care of her grandmother living with PD. Maria shares in her personal blog how her best friend unexpectedly became her care partner:
“I have been most fortunate in having my BFF act as my caregiver. Ironically, I was her husband’s Parkinson’s doctor for years and still continue to look after him from the sidelines. But, when I was diagnosed and forced to close my practice due to medical issues, she was the first one to assume the role of not just my friend but also that of caregiver and travel companion. She often says she retired, the same year I did, to take care of me. I suppose it’s a great symbiotic relationship.”
This National Family Caregivers Month and beyond, MJFF celebrates the stories of people with Parkinson’s, their loved ones, researchers, advocates and supporters — speeding progress towards a cure, together. Join us on MJFF’s Facebook, Twitter and Instagram channels to share your story on navigating life with Parkinson’s to help support others on the journey.