I’ve sat in a lot of support group rooms and seminar halls over the years. Somewhere around the second or third speaker, it happens — someone at the podium looks out at a room full of people with Parkinson’s disease who drove themselves there, who volunteer, who still run businesses and babysit grandchildren, and calls them “patients.”

It’s meant kindly. It almost always is. But it’s one of two words that make me wince, and after more than 35 years in this work, I’ve decided they’re worth talking about.

Peeling Off the Labels

Look up patient and you’ll find: a person receiving or registered to receive medical treatment. Reasonable enough. Then scroll to the synonyms — sick person, sufferer, victim, invalid.

That’s the company the word keeps.

Referring to a community member who happens to have Parkinson’s disease as a “sufferer” doesn’t sound very empowering to me. And unless you’re sitting in my clinic or your neurologist’s office, you aren’t a patient — no more than the person beside you with heart disease, diabetes, or hypertension is a patient while they’re at the grocery store.

We all collect labels over a lifetime. As a society we’ve traded some of the worst ones in — “crippled” became “disabled” — and that progress was hard-won. But group labels like “Parkies” or “Parkinsonians” carry a particular risk: they invite people to focus on the visible signs of the disease and miss the person standing in front of them.

My dear friend and fellow blogger Kate Kelsall, now deceased, wrote about this better than I can:

“When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued. Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.”

Caregiver or Care Partner?

My second pet peeve is calling a spouse a “caretaker” or “caregiver.” I know this one may sound like semantics. Stay with me.

Neuropsychologist Paul Short first helped me understand the distinction, and he explains it simply: a caregiver gives care, and it’s usually a paid role — a nurse, an aide. A care partner is a partner in care — a spouse, significant other, or adult child.

I understand that many of you reading this are devoting most of your waking hours to taking care of someone. The shift to care partner isn’t meant to minimize that. It’s meant to reframe it as something you’re in together — which means your needs stay on the list, too.

In practice, that can look like:

• Hiring someone for a few hours a day or week, especially if falls are a worry when you’re out
• Continuing to go to your own exercise class, or keeping up a hobby that’s yours alone
• Asking a friend or neighbor to handle an occasional appointment or errand
• Talking with a counselor about the changes affecting your relationship

And perhaps most important: preserving the primary relationship you have — husband, wife, parent, partner — underneath all the tasks.

Here in Florida, many of the older adults I work with have limited family nearby, with children and grandchildren living out of state. I routinely watch a spouse’s own health buckle under the weight of trying to meet every need alone. No one can be a 24/7 nurse for long. Knowing when to ask for help isn’t a failure of devotion. It’s what makes the devotion sustainable.

Why the Words Matter

I love words and the power of communication — it’s a good part of why I love being a speech-language pathologist. When a stroke or a neurological disease takes communication away, it can take autonomy and decision-making with it, and it can fracture relationships. The inability to communicate may also bring changing life roles and real feelings of grief and loss for family members.

I experienced this firsthand. At the age of 89, my mom — who had been golfing, bowling, and playing bridge weekly — suffered a stroke that left her with a severe expressive aphasia, the inability to retrieve words to speak. Each time I left her in rehab to return to my work and home in Florida, I wondered and worried how she would explain to a nurse that she was in pain or needed help. Fortunately, in the months following her stroke she regained much of her language. But it was a time of fear and frustration for me and my family.

The words we use can empower or wound. They can stir hope and resilience, or anger and despondency. That’s true from a podium, and it’s true across a kitchen table. So when you introduce someone this week, try leaving the diagnosis out of the first sentence. See what comes back.

What labels have you been handed that never quite fit? I’d love to hear.

When I created Voice Aerobics® in 1999, the intent was to provide guided speech and voice practice people could use before, during, or after speech therapy. Despite many changes in healthcare, the mission hasn’t change.

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Certified End of Life Specialist (CEOLS) * Voice Aerobics® A Whole Body Approach to Voice Practice

Voice Aerobics the heART and Science of Voice Practice