Are you like me, a member of a rotten club neither of us wants to be in?

That is the chronic disease club — those of us who have some kind of underlying illness that, while it might vary in its severity, is generally not curable.

We are many. Estimates from the American Hospital Association put our club membership at 133 million, not quite half of the nation’s population. In another five years, that number is expected to shoot up to 170 million.

And while it’s not an exclusive club, it is an expensive one: According to a 2024 report from the Centers for Disease Control, about 90% of the U.S.’s annual $4.1 trillion health care expenditure goes to managing and treating chronic diseases and ongoing mental health conditions.

But I don’t want to talk about outrageous health care totals.

I don’t even want to talk about the causes of disease or treatments or research for cures.

What I want to talk about is how to wrap your head around what it means to be incurable and still go on enjoying your life.

An unwanted diagnosis

About two years ago, I started to notice weird little things happening to me. My loopy, large handwriting had gotten much smaller. Every once in a while I felt a strange shiver run through my left shoulder. I felt more tired than usual. I had a twitch in my finger. I kept losing the beat in my exercise dance routine. And during long hours in the saddle while on a horseback riding trip in Colorado, my left leg felt noticeably weaker than my right.

Then my cousin — my big, strong, mountain climber of a cousin — called to tell me he had been diagnosed with Parkinson’s disease, a movement disorder caused when the brain stops producing enough dopamine, which slowly worsens over time.

“What were your clues something was wrong?” was the first thing I asked, and as he rattled off the familiar symptoms I felt my heart sink.

It took the better part of a year to convince my primary care physician to take my suspicions seriously. He said I was “too young” to have Parkinson’s (which, as a woman in my 50s, are words I never hear anymore). I reminded him that the patron saint of Parkinson’s, Michael J. Fox, was only in his 20s when he was diagnosed with the disease that would eventually both rob him of his acting career and yet give him the mission to better the lives of millions around the world.

I’ll spare you the details of my many tests and evaluations. In the end, I became one of the nearly 90,000 people the Parkison’s Foundation estimates are diagnosed each year with the fastest-growing neurological disease in the world.

Well, this is a bummer. What now?

Let it sink in

In the wake of receiving news that you have any one of the many diseases science hasn’t found a way to cure, only manage, take some time for yourself.

I threw a number of pity parties, complete with many boxes of Kleenex, eating microwave popcorn in bed and binging bad TV shows (“Emily in Paris,” anyone?).

Reka Janisse, an Instagram health influencer and a person with Parkinson’s based in Texas, advises allowing time to cycle through all five stages of grief — denial, anger, bargaining, depression and acceptance.

“This for me took about three years and I only disclosed my situation to my family and a couple of close friends,” she told me over email. “Having a small circle allows you to fully feel all the emotions without being on a public stage. Only when I got to acceptance did I start my Instagram account, @pd.family. I also thought that I couldn’t be confident and inspiring to others unless I was fully embracing my new life.”

Janisse is an example of what licensed clinical social worker Lisa Anderson at Brooks Healing Center in New York calls practicing “radical acceptance.” It means acknowledging the reality of your condition without judgment or resistance. “It doesn’t mean giving up — it’s about focusing your energy on what you can control instead of what you can’t,” she said in an email interview. “Resisting the reality of chronic illness often leads to more emotional distress. Acceptance, on the other hand, can open the door to proactive coping and emotional peace.”

‘The courage to change the things I can’

Early in my diagnosis, a friend with her own chronic illness told me to “believe the diagnosis, not the prognosis.” She pushed for me to learn as much as I could about my Parkinson’s. That way I could not only advocate for myself when navigating the medical labyrinth, but also make lifestyle changes that would boost my overall health and mitigate the disease to whatever extent possible.

This echoed a guiding principle in my life that for years I have called upon, the Serenity Prayer: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

The fact is, Parkinson’s, like diabetes or a host of other ailments, may be progressive and incurable but it is not a death sentence — not an indication of my immediate demise, physically or mentally.

It rolls out over years; decades, even.

More (what I hope is) encouraging news, the rate of progression is different for everyone, and can be influenced by factors that include heavy exercising, rest, diet and medication.

Look, here’s what the Mayo Clinic says: “This condition is by far the most treatable of all neurodegenerative disorders. The vast majority of patients see major improvements in their symptoms with treatment that includes exercise and medication. For example, most people who have PD are able to function better in their daily lives five years after they start medication treatment than they were before they started treatment.”

Despite all there is to manage PD there remains no cure, so unless some big medical breakthrough happens, when I’m old it will rob me of mobility and possibly my mental acuity – like a freight train far off in the distance that will someday run me over.

Acknowledging this, too, is important, according to advice I received from Kim Peirano, DACM, a hypnotherapist and acupuncturist in San Francisco who treats patients living with chronic and terminal illnesses.

“I think one of the main points is letting go of excessively positive thinking. We need to be met where we are at and have our experience acknowledged by another,” she says. “The realist approach is incredibly helpful because it validates instead of trying to invalidate. It’s usually helpful to be real about our experience instead of trying to put on a happy face, which is often very isolating.

“Finding connection, being witnessed, and finding tools like hypnosis to help us self-regulate and reconnect to what matters most to us is essential for living with a chronic or terminal illness,” says Peirano.

Find support, give support

I realized early on that, even though they love me, I couldn’t expect my family or even my dear, close friends to understand what I’m going through. I started looking for resources for how to live well with the disease — and found many great ones. My favorites:

•Michael J. Fox Foundation. This is the cornerstone of the community, with an emphasis on research. A crucial resource for the latest information and for connecting to clinical trials.

•Davis Phinney Foundation, founded by cyclist Davis Phinney, Olympic bronze medalist and Tour de France stage winner, who was diagnosed in 2000. This is a treasure trove that provides comprehensive information, meet-ups, videos, an ambassador program, and more.

•Brian Grant Foundation, founded by NBA player Brian Grant, who was diagnosed in 2008. Offers information and inspiration on eating well and exercise, and has a virtual meet-up program.

•No Silver Bullet for PD. This is a YouTube channel begun by two people with Parkinson’s, offering interviews with researchers and alternative therapy experts. Certainly not meant to replace medical guidance from your doctors, but it offers thought-provoking information and fresh insights.

•Parkinson’s Association of San Diego. This vibrant association offers events and a mentorship program that pairs the newly diagnosed with people who will share their experiences navigating the disease.

I was lucky enough to find a mentor in Oceanside resident Marty Acevedo, who has lived with Parkinson’s for two decades. She’s also a registered dietitian nutritionist and the former director of food and nutrition, environmental services, and patient transportation at Tri-City Medical Center in Oceanside. Marty’s first-hand experience and insights got me out of doomsday thinking and continue to inspire me forward.

She says activism has enhanced her life with PD. “I gain more from those I speak with than they do from me,” she told me via email. “It’s a profound pleasure to see faces filled with frowns, worry and sadness evolve into smiles, laughter and hope when we speak.

“My fear of and anxiety related to public speaking has disappeared; I frequently provide presentations and talks for groups and experience no angst. I’ve had the opportunity to interact with many clinicians and researchers, speaking with them about various issues and questions — and my comments have been seriously considered and, on occasion, have changed the course of action. I remain confident and try to be a role model for others.”

In fact, I’m writing this article in the hope that sharing my experience can be an act of service to anyone facing the challenge of living with any kind of chronic illness, because of how essential Marty and others sharing their experience has been for me.

I always think of Marty’s answer when I asked what her most important advice was for dealing with Parkinson’s: “Live your best life.”

What that means for me is learning not to put off the things I really want to do. I’ve always heard the saying “Tomorrow is never guaranteed” but chronic illness has a way of making that more real. I try to be earnest and open with others and tell people how much they mean to me. I try not to complain about things I can no longer do and instead appreciate all that I can still do.

If that all sounds corny and too obvious, oh well. It’s the truth.

Good luck to all of us.

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