how i care for parkinson’s disease: 'it’s an opportunity to demonstrate love'
7 minute read
aurora's husband peter was diagnosed with parkinson's, but with love and the philosophy of responsible carpe diem, they continue to live life to the fullest.
aurora and peter di pasquale
stay up to date on this topic
when peter di pasquale started experiencing the subtle signs of parkinson’s disease, he and his wife aurora went to the doctors to see what might be wrong. they were told by their physician that they had nothing to worry about—the experiences peter was having were nothing more than a simple fact of aging.
before the diagnosis, one of those signs was shaking in one of his fingers when he tried to use his computer mouse at work, a symptom that peter would joke about, calling it his trigger finger.
however, when aurora noticed that he began having difficulties with speech and eating, she pushed for more investigation.
“that was an uphill battle,” said aurora, “the doctor should have been more attentive to the symptoms earlier on.”
when he was eventually diagnosed roughly three and half years ago, he was put on the parkinson’s medication levodopa to manage his symptoms. after that, he began to do really well, according to aurora.
in the last year, peter and aurora have enjoyed their hobbies as much as possible, such as pickleball, gardening, and staying active with long walks after dinner to hit 10,000 steps a day. they even went to italy to explore the country for about four weeks last year.
“we’re very active considering,” said peter. “she (aurora) forces me most of the time, but i follow suit.”
peter is now referred to as a superhero in their household by his grandkids, who have dubbed him peter parker (their very own spider-man), a nickname that peter and aurora welcome because keeping things light is all part of the process of living with and caring for a loved one with parkinson’s disease. humour is one of their primary avenues for taking the diagnosis with stride.
“we make light of it,” said peter. “this is what life has given me, and we’re going to deal with it.”
finding a new normal with parkinson’s disease
advertisement
before peter’s diagnosis, he and aurora were very active and busy. they spent time travelling, dedicated their time to their respective careers, and built a family and a life together. afterwards, while some things have changed, they’ve made it a point not to allow the diagnosis to take too much away from them.
however, living with parkinson’s isn’t always easy, and there are a lot of symptoms to contend with. for peter, fatigue is a large one, which can be compounded by nutrition as he has developed stomach issues that make it more difficult to absorb nutrients.
“i have not really stopped doing anything that i did before,” said peter. “my body tells me, ‘okay. you need to stop now’ because i do get tired a lot quicker.”
the activity on the itinerary can also be a bit of an issue for peter because while he’s happy to push himself physically to get out in his garden or do some work with his power tools, other daily tasks he finds less motivation for end up being pushed to the back burner when he has limited energy stores.
this amplifies aurora’s role as a primary support for peter, a term she uses to describe how she cares for her husband because the term caregiver doesn’t feel quite right. she was a caregiver for her father, and the two experiences were starkly different. her father was debilitated, but peter requires less hands-on care because he’s still highly capable.
“as his primary support, i feel sometimes that it’s hard to understand how he’s feeling because i’m trying to push him to do things, and i’m always trying to gauge, where do i stop? it’s frustrating for me because i know he can. he’s still physically able, but his drive isn’t,” said aurora. “i have to be his driver.”
navigating the demands of life after a parkinson’s diagnosis
while aurora and peter continue to live their lives as normally as they can with peter’s diagnosis, life around them hasn’t stopped. they’re in the midst of renovating a home, which has put a bit of a strain on their lives, even though it’s leading to being around their children and grandchildren permanently.
advertisement
they’ve also lost several people in the last three or four years throughout the covid-19 pandemic, so grief has a seat at their table as well. but even through all of it, aurora continues to do what she can for herself so that she can show up for peter when he needs her to, and he does the same.
aurora continues to take time to ensure that she doesn’t get overwhelmed by the hecticness that goes on around her outside of supporting her husband while he learns to live with parkinson’s disease. she’ll take walks with a friend, tracking her steps with a smartwatch, disappear to play pickleball for a couple of hours, or put on a podcast to drown out the noise.
“i do my best,” she said, describing her self-care methods. “i won’t say i pray a lot, but maybe it’s a prayer of a different kind.”
letting go of a planned life
aurora and peter do whatever they can to keep their lives as unchanged as possible following peter’s diagnosis, but some things require a bit of finessing on their part so that they’re still able to do the same things.
“ten years ago, if you had said to me, ‘what is your retirement going to be like?’ … i think what would have been a healthy life. i was imagining us being more able to do more travelling, to have a little bit of a different lifestyle,” said aurora.
their plans and how they must execute them have changed drastically, but both peter and aurora have decided not to take the diagnosis lying down. parkinson’s won’t stop them entirely.
their trip to italy, for example, required a level of planning and organizing that was a more significant task than it would have been prior to parkinson’s disease being in their lives.
“it was a very stressful situation because we had to plan everything to the last detail,” said peter. “and i must say, this person beside me (aurora) did most of the planning. i was just the porter carrying the suitcases.”
advertisement
there’s also a new sense of urgency to do all the things they had planned to do in retirement because while peter is doing well now and is on medication that manages symptoms, parkinson’s is a progressive disease that doesn’t stop for anyone.
“i don’t want to make it sound terrible, but i feel like we have to do everything sooner,” said aurora. “we have to take advantage of every day that peter is still able to function the way he is functioning.”
peter notes that he wants to be able to enjoy all of their plans while he still can because “you get a totally different perspective on life when you know that light at the end of the tunnel might be a freight train coming.”
living under the rule of carpe diem
with their lives altered by a parkinson’s diagnosis, aurora and peter live in a way that encourages them to seize the day every time they get a chance. they no longer try to justify a nice dinner out. they just go and enjoy themselves.
they take the little things, even those that may have required more of a conversation prior to the diagnosis, and allow themselves to throw caution to the wind in a responsible way that will enable them to live now while also preparing for what peter’s future may look like.
aurora notes that her father’s care was expensive, but she and her sisters could be there for him, and his parents had savings and a pension to pay caregivers privately. she and peter are all too aware that at some point in their lives, “hopefully it’s a long ways away,” they’ll have to face that reality as well.
“it’s not a full-time job for me now (taking care of peter), but at some point, it could be, will be, and those are the kinds of thoughts you don’t say out loud very often,” said aurora. “i don’t want to think about that. when it happens, i’ll deal with it. but at the same time, we are preparing and trying to balance that with, ‘hey, we want to do things today. let’s go and do them.”
advertisement
finding the silver lining
with everything ahead of them, peter and aurora continue to look for the silver lining in their new reality and learn new ways to approach life and love.
“i think it kind of pulled us together more because we’re kind of looking after things in a different way now,” said peter. he also notes that he doesn’t want to call himself the “cause” for bringing together his family, but he’d never turn down a little extra special attention.
for aurora, being his primary support is different from how she saw her retirement, but one thing she had always wanted remained the same.
“one of the things i do is i spend a lot of time with him,” she said. “we were always meant to be together. we met when we were very young, and we’ve been very, very fortunate in that we’ve known this kind of long-term relationship. a lot of people don’t anymore.”
peter and aurora get to continue living their lives together through retirement, and even though peter has parkinson’s and requires some level of support, they’re both grateful for the life they got to live with each other and all the time they still have.
“the silver lining is gratitude for what we have had and what we still can have. it’s an opportunity to demonstrate love because you can say i love you to someone, but my feeling has always been, it’s not about what you say or what you feel. it’s what you do,” said aurora. “love is about what you do, what you’re willing to do for another person. that’s what love really is.”
share story
