Parkinson’s doesn’t always start with a tremor — here’s what to watch for
Loss of smell, constipation and changes in handwriting can show up years before the shaking does, the Aging Untold experts say
(Aging Untold) — When most people picture Parkinson’s disease, they picture a tremor. But the disease often begins long before that, with subtle changes that are easy to miss — and easy to dismiss.
The early signs most people miss
“Most people think that when they think of Parkinson’s, you think of tremors. But signs really do, in fact, occur much earlier, very subtle signs like the loss of smell is a big one. And constipation or the changes in the handwriting,” Dr. Rhea Rogers, a board-certified physician, said.
Rogers explained what’s happening inside the brain during those early stages.
“What’s going on is there is a misfolding of these abnormal proteins that they start to form these things called Lewy bodies,” she said. “And they accumulate and they damage the dopamine-producing neurons in a part of the brain called the substantia nigra.”
By the time tremors appear, Rogers said, significant damage has often already been done.
“The problem is, by the time you see tremors, you’ve probably damaged 50% to 70% of those dopamine secreting neurons,” she said.
Real-life examples of early warning signs
Aging expert Amy O’Rourke said she’s seen those early signs play out with people she’s worked with — sometimes missed, and sometimes caught in time.
“I remember a client of mine was telling me that her husband’s writing started to get smaller and smaller and smaller, and then his arm — like when he walked, one arm moved and the other one didn’t,” O’Rourke said. “Two very common symptoms that if she had brought him to the doctor, something could have been done.”
O’Rourke also recalled a different kind of story — one of long-term resilience.
“I was watching this university professor teach a class, and in the middle of the class he said, ‘You know, I have Parkinson’s and I’ve had it for 15 years,’” she said. “He began to tell us about the life that he built and all the support network that he used to continue living his life with Parkinson’s.”
Rogers pointed to another early sign that’s often overlooked.
“I think the one sign that people miss is that acting out dreams during the middle of REM sleep,” she said. “That can be an early sign as well too.”
Gerontologist “Sam” Cradduck also drew a distinction between a typical tremor and one that could signal something more serious.
She said essential tremors, which can happen if you’re active, writing or you’re doing something for a long time, are not out-of-the-ordinary things.
“It’s when you’re at rest and you see that tremor, especially early on. If you see anything, then there’s something neurological going on that you need to have checked out,” Cradduck said.
She added that tremors aren’t a guarantee, even in advanced cases.
“Not every presentation of Parkinson’s, even in an advanced stage, has tremors,” she said.
Movement and community make a difference
Aging well coach Katherine Ambrose said staying active is one of the most powerful tools available to people living with Parkinson’s.
“There are really great examples out there of people that have just thrown themselves into boxing, dance, water exercise, rock climbing, urban pole walking — all kinds of really great exercise sets promoted within the Parkinson’s community,” Ambrose said. “It really makes a huge difference for those that are able to and choose to do that.”
O’Rourke also praised the support systems available nationwide.
“I think the Parkinson’s community has done a phenomenal job with all the support and care that they offer all across the country — the Parkinson’s Movement Disorder Alliance, the Michael J. Fox Foundation, the Parkinson’s Voice Project,” she said. “I’ve spoken at a lot of the Parkinson’s groups, and they bring in education ranging from housing to finances to legal. They really give both the caregiver, the family and the person with Parkinson’s a lot of support.”
Rogers pointed to Michael J. Fox’s role in raising awareness of the disease.
“Michael J. Fox really brought awareness to Parkinson’s,” she said.
Cradduck agreed, calling Fox a pioneer.
“I believe that he has been a pioneer in showing the resilience of the human body and what you can go through and what you can still do and what you can still accomplish,” she said.
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Key takeaways for Parkinson’s patients and families
- It’s a diverse spectrum. Parkinson’s looks different in everyone and can start years before tremors show, with early signs like sleep issues or loss of smell.
- Movement is medicine. Consistent exercise like boxing, dance or balance training protects brain function and helps preserve independence.
- Never walk alone. Isolation makes Parkinson’s harder. Joining a support community is just as important as medical treatment.
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