I found this online today and it resonated …
The Care Partner: The Role No One Applies For
Parkinson’s disease is often described as an individual diagnosis. One person sits in a neurologist’s office and hears the words: Chronic. Incurable. Progressive. One name is written on the chart. One name on the pillbox label. One body becomes the focus of clinical attention.
But Parkinson’s never belongs to just one person.
From the moment of diagnosis, a second role is created—usually without discussion, consent, or preparation. The role of care partner. Not a nurse. Not saviour. Not a sidekick. Something far more complex and far more human.
I say this not as an observer, but as someone who has lived with Parkinson’s for over a decade. My disease has progressed, adapted, surprised me, and forced me to renegotiate my relationship with my own body. But alongside that journey has been another, quieter one—the evolution of the person who walks beside me.
Care partners rarely recognize themselves in the role at first. They are spouses, children, colleagues, and friends. They start by “helping out,” filling in small gaps that appear almost imperceptibly: driving a little more, reminding a little more, and compensating quietly.
Over time, those gaps widen.
What makes the role so difficult is that it is undefined. There is no training manual for how to help without diminishing. No checklist for when support becomes supervision. There is no clear line between loving assistance and unintended control.
From the inside, I can tell you this: the greatest challenge is not the physical care. It is the emotional calibration. Knowing when to step in—and when to step back.
Care partners carry an enormous cognitive and emotional load that is rarely acknowledged. They track symptoms. They anticipate fluctuations. They remember medication schedules, appointments, and subtle changes in mood or movement.
They also absorb the fear.
Fear of progression. Fear of the future. Fear of saying the wrong thing. Fear of being honest. Fear of being honest too soon. Fear of doing too much. Fear of not doing enough.
What often goes unseen is how much restraint this requires. How often care partners choose silence over correction. Patience over frustration. Strength over vulnerability.
And yet, they are rarely asked how they are doing.
From my perspective, the most meaningful care is not about doing things for someone—it is about preserving dignity with them.
Parkinson’s already takes enough. It interferes with autonomy, confidence, and identity. When care is delivered without sensitivity, even with the best intentions, it can unintentionally accelerate those losses.
The most effective care partners understand this intuitively. They offer support without spectacle. They collaborate rather than command. They allow room for independence—even when it would be easier to take over.
This requires emotional intelligence, not instruction.
Parkinson’s does not just change the person with the diagnosis. It reshapes relationships.
Care partners grieve, too. They grieve the ease that once existed. The predictability. The unspoken assumptions about the future. They often do this privately, believing they must remain strong, positive, or encouraging.
But resilience is not silence.
Care partners need space to acknowledge their own fatigue, frustration, and fear—without guilt. Without feeling that doing so somehow detracts from the person with Parkinson’s.
It does not.
The best care partnerships I have seen—and experienced—are grounded in mutual respect. They are not hierarchical. They are adaptive. They evolve as the disease evolves. They are built on conversation, not assumption. On listening, not rescuing. On shared problem-solving, not unilateral decisions.
Parkinson’s may alter roles, but it does not erase personhood.
The individual with Parkinson’s is still a partner, still a professional, still a decision-maker, still themselves.
The care partner’s role is not to replace that identity—but to protect it.
If you are a care partner, know this: your role matters more than you may ever hear. Not because of what you do, but because of how you are present.
And if you are living with Parkinson’s, as I am, take the time to recognize the person beside you—not just for their support, but for the quiet strength it takes to walk a road they did not choose but chose to stay on it with you.
Parkinson’s is a shared journey. The diagnosis may belong to one of us—but the resilience belongs to both.
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Today I swam and rebounded in the morning, did the last of my washing - so nice to have access to my washing machine - Adoring Husband and BGWLBH seem to hog it more often than not, after which I made a rather large batch of curried egg with lettuce which I scooped onto some GF toast and feasted.
I also made a smoothie of fresh pineapple, passionfruit, banana, Brazil nut, apricot kernels, Celtic sea salt and coconut water.
Then I plonked myself in front of the tennis and watched Alcaraz defeat Paul, Sabalenka defeat Mboko, Sverev defeat Cerundolo and Tien defeat Medvedev.
I did a baked chicken with baked potato, sweet potato, pumpkin, carrot and onion, with zucchini, asparagus and broccoli plus home made gravy for dinner. Quite delicious.
This evening I had to choose between the T20 cricket final and the Alex De Minaur match. If I chose the tennis, AH would leave the room, so I chose the cricket and missed Alex’s seemingly easy win. His next clash is with number one in the world - Alcaraz! We’ll find out what Alex is really made of in that match!
Perth Scorchers have annihilated Sydney Sixers in the cricket final.
Tomorrow is Australia Day and we have planned a quiet one at home. More tennis. More swimming. More Harley play. More rebounding. More eating.
More remembering the horror of Australia Day 2013 and the tornado damage that we endured. The memories and photos will pop up on Facebook as they do every year at this time.
We caught the edge of a storm tonight. Lots of noise and enough rain to wet the road.
Adoring husband made friends with a snake today. He was on the step ladder in the front yard when he looked down to see a whip snake trying to climb the ladder! Mildly venomous. When I say ‘made friends with’ I mean ‘jumped and ran for his life’. He survived to tell the tale.
I need to nap now.
Nite all.
