In Part Two of a two-part story, we talk to Jennifer Andrewes, who was diagnosed with Parkinson’s aged 48, walked the Camino in France and Spain – and has written a book about it…
Wellingtonian Jennifer Andrewes has had a life-long love affair with France. She spent time at school in France there while her father was there on sabbatical. She later learned French at university, speaks it fluently, and has taught English in France.
During her 40s, she was feeling burned out by juggling her family and a busy communications job in Wellington. So in 2014, she, husband Stephen and their three sons spent four months living in a French village – which they repeated again in 2016.
After Jennifer wrote a blog (myparallellives.com) about her family’s time in France, her readers of the blog prompted her to turn that into a book. In 2018 she self-published Parallel Lives: Four Seasons in the French Pyrenees. The family still visits regularly, and rents out their cottage when not there.
In 2020, Jennifer was diagnosed with Parkinson’s; in 2022, she walked two trails across France and Spain on the Camino (see Part One of our story). She kept daily journals. “I used to journal on my private Facebook page but I didn’t want to open that up to people I didn’t know.” So she started a dedicated Facebook group for people who wanted to follow her. “Followers are a mix of family, friends, friends of friends, colleagues and members of the public who have heard or read about my walking and writing. Word of mouth is the main source of followers, along with the active role I play in walking communities.”
Encouragement from her followers inspired her to turn her journals from her first two Camino treks into her second book. She recently self-published A Will And A Way: On Foot Across France.
Jennifer isn’t done with the Camino. Last year, she and a travel companion walked the 2500-kilometre Via Francigena, from Canterbury in England, through France and Switzerland, to Rome.
“On that pilgrimage, I realised I was spending too much time worrying about things that could happen days, weeks or months into the future. I thought ‘why am I doing that?’ because by then, things could be different.”
“A pilgrimage has a long tail. Sometimes long after it ends, back in daily life, you realise something has changed and you just deal with things differently.” In a good way.
Jennifer isn’t stopping walking anytime soon. I talk to her the day before she leaves for Spain to walk the Vía de La Plata, an ancient path that crosses the country. She’s also making plans to walk from Rome to Santiago, Spain next year.
Jennifer writes about the profound impact of walking long distances on her physical, mental and spiritual wellbeing. “It undeniably alleviates my symptoms, and joy, as a trigger for dopamine, is key.”
“While I can walk, I will walk. Maybe I can’t walk off the Parkinson’s completely, but I’ve now walked far enough to know that I can keep it at bay, and I am still hopeful I can extend that by keeping walking. There’s always more in the tank, even if it’s just one more step. And then another step.”
As for those five able-bodied years the neurologist spoke of, it’s been longer than that, and Jennifer is still able-bodied.
“I live with the likelihood that at some point in the future, I’m going to lose my mobility… It is probable that there will come a time when I can no longer walk. But that time is not now, and it is not tomorrow. Whether in denial or determination, I’m deliberately choosing not to contemplate that possibility. If that time comes, I’d rather face it when it does. Why waste extra time worrying about it before I must?”
And with the progress in medical research, she’s hopeful. “A cure would be nice, sooner rather than later! Cancer is terrible but some people have a chance to beat it. I’ve struggled with Parkinson’s having no cure.” There’s a pretty normal life expectancy. “I’m not afraid of dying, but I’m afraid of not living fully and well.”
“But a positive mindset makes a huge difference, so I’m quite deliberate about [cultivating] that.”
She practices the Feldenkrais Method: a meditation yoga focusing on mind-body awareness. “Neurologically, it’s potentially powerful. Also, I really consciously think about how I’m breathing. And I stay socially connected.”
Initially, Jennifer didn’t tell many people about her condition. “I didn’t want them to withdraw. I’m afraid of being defined by it, and I didn’t want to become invisible or isolated. But after about a year, it reached a point where I was wasting so much energy trying to cover it up. It wasn’t a good fit with my values to not be open about it. I felt like I was ‘hiding me’. Since then I’ve been quite deliberate about telling people, without making a big deal about it.”
“But I’m afraid of being discriminated against because of Parkinson’s. The prevailing narrative is that it’s an old person’s disease, and you might not be compos mentis [of sound mind] or shuffle or freeze. So you worry people will start looking at you differently. Like, do we trust you can still do your job? How long before you stop being able to be relied on?”
“When I told my boss, my team and my colleagues, they were, without exception, incredibly supportive. Like ‘let us know what you need when you need it, otherwise carry on carrying on’. My boss still gave me general-manager opportunities.”
“I haven’t been discriminated against. However I know some people with Parkinson’s who have been discriminated against in the workplace – removed from doing certain things, or not offered certain opportunities because their boss thinks they might not be up for it or capable of it. It’s like, ‘let us determine that!’.”
Jennifer left her full-time comms joba year ago. “I was capable of doing it, but increasingly it took so much out of me that I’d get home, have dinner and need to go straight to bed. I thought that if I carried on like that, the progression of Parkinson’s was going to be faster.”
“Going back was reliant on there being some part-time work with less responsibility.” However because the government has gutted the public sector, there’s not much out there. But she’s looking.
“I miss the work, my colleagues, the connections. But I’m lucky I have a really wide friend group. I’m really extroverted. It’s my modus operandi to be always reaching out to people – always looking for things to do within my capacity.”
Changing the narrative
Jennifer doesn’t want to be defined as “the woman with Parkinson’s”. But she wrote the book – and is doing this interview – to help change a narrative. “One of the challenges with Parkinson’s – particularly for women with early onset – is the prevailing narrative that it’s an old person’s disease. And there’s been very little research into what younger women experience and how, and the impact of hormones on the condition.”
“A lot of women out there have Parkinson’s. It’s the world’s fastest-growing neurological condition. But when I started telling people, 90% of the time I’d hear ‘my uncle died of Parkinson’s’ or ‘my grandfather has Parkinson’s’. That’s not super helpful to hear. If somebody said ‘my daughter has that’, your mindset changes, right?”
“So I think it’s important for people in my demographic to share our stories, because early on, I couldn’t find people like me, certainly not in New Zealand. Many people are very private about having it – for the reasons we’ve discussed – it’s really invisible. I went on Twitter out of desperation and found younger women like me in the U.K. and Europe. It was a revelation: ‘wow, I’m not alone’. These women were living with Parkinson’s, and living their lives. That was inspiring to me.”
“Now, particularlywith the book, people know I have Parkinson’s and that I talk about it. They feel safe to approach me and share their stories.” Jennifer welcomes emails from others with Parkinsion’s, and she’s open to being booked as a speaker. Jennifer signed books and did a reading at Unity Books on World Parkinson’s Day. She was worried about her tremor, but the reading went fine – much like it did on the Camino, when she read excerpts from the Pope’s message to some nuns. In both cases, no one appeared to notice the tremor – and if they did, so what?
What is Jennifer’s advice for anyone diagnosed with Parkinson’s?
“You’re going to get a lot of advice. People will say ‘here’s what I’ve been told. Here’s what I’ve experienced. Here’s how I’d do it.’ Don’t let anybody else tell you what your story will be. Write your own story.”
*Read Part One of our story here. Visit myparallellives.com to contact Jennifer, subscribe to her blog, engage her as a speaker, rent her French cottage, or buy her book(s)
