Parkinson's Non-Motor Symptoms: What Caregivers Need to Know
- Christine Seaby
- Jul 8
- 5 min read
Steady together non motor symptoms recap · MD
The Symptoms Nobody Talks About: Our Steady Together Session on Non-Motor Symptoms
\If you were with us on the call this week, you know we covered a lot of ground. Carol led us through one of the toughest topics we've tackled yet — the non-motor symptoms of Parkinson's that so often go unspoken: incontinence, swallowing difficulties, drooling, loss of smell, erectile dysfunction, hypotension, excessive sweating, and psychosis.
These aren't the symptoms people picture when they think of Parkinson's. But if you're caring for someone, you already know they can be just as disruptive to daily life and honestly, a lot harder to talk about. So let's talk about them.
Incontinence: Practical, Not a Sign of "Getting Worse"
Carol was clear on this one: needing help with bladder or bowel control isn't a signal that things are falling apart. It's a common part of the disease, and getting the right tools in place early is about safety and dignity, not decline.
A few things that came up:
Bedside commodes for nighttime safety
Condom catheters as an option for men
Elevating the head of the bed with a foam wedge to reduce nighttime accidents
Incontinence briefs — no shame in them, they're a tool like any other
Kegel exercises, which both men and women can do daily (Carol shared some easy visualization cues help you feel the right muscles engage)
One of our caregivers shared her positive experience working with a pelvic floor specialist after her own surgery, and it got us talking about how much pelvic floor therapy can help — for both the person with Parkinson's and for caregivers managing their own bodies through all of this.
Ottawa resources for pelvic floor care:
Bloom Integrative Clinic — pelvic floor physiotherapy
East End Livewell Myofascial Release — pelvic floor therapy, massage therapy, and Myofascial Release
Fascial Connections — pelvic floor therapy, massage therapy, and Myofascial Release, located at 400-2200 Prince of Wales Drive
Myofascial Release is one of my personal favourites for tension and pain relief — if you haven't tried it, it might be worth asking about at any of these three.
A special shoutout to Fascial Connections — they're generously sponsoring our upcoming golf tournament, and it means so much to have local wellness partners who show up for this community. If you're looking for myofascial release or pelvic floor support in Ottawa, give them a look and tell them Steady Together sent you.
Swallowing Safety
Carol flagged some sneaky problem foods — oranges, grapes, and certain breads — as common choking hazards. A few safety habits worth building in:
Cut food into smaller pieces
Serve liquids alongside meals rather than on their own
Tilt the head forward (chin down) when swallowing pills
Ask for a referral to a speech-language pathologist if you're noticing coughing, throat clearing, or wet-sounding voice after eating — these can be early signs of aspiration risk, and aspiration pneumonia is genuinely serious
If any of this sounds familiar, don't wait it out. A swallowing assessment is a quick, low-stress appointment that can catch problems early.
Drooling
This one gets talked about the least and causes some of the most embarrassment. Carol's suggestions:
A speech therapy referral (yes, they help with this too)
Mouth rinses and oral sponges
Xylitol tablets to help stimulate swallowing
Botox injections — though one of our caregivers shared that Botox didn't work for her husband's drooling and caused significant side effects when tried for bladder issues. Every body responds differently, so this is a good one to talk through carefully with your care team before committing.
Loss of Smell
A reduced sense of smell is common and often an early, under-the-radar symptom. It sounds minor, but it affects appetite, enjoyment of food, and even safety (not smelling smoke or spoiled food). If this is part of your household's reality, know that it's a recognized part of the disease and not something to dismiss.
Erectile Dysfunction and Libido Changes
Carol was straightforward: these changes are common in Parkinson's and worth bringing up with a doctor, even though it's not always a comfortable conversation. You are not the only ones navigating this, and your care team has heard it before.
Hypotension (Low Blood Pressure)
About 20% of people with Parkinson's experience hypotension, and it can be genuinely dangerous — especially that lightheaded, room-spinning feeling when standing up too quickly.
Strategies Carol walked us through:
Increase fluid intake, sipped steadily through the day rather than all at once
Electrolyte-rich drinks — LMNT is a good option to add to water for both hydration and light flavour. Christine suggest Costco as they have several electrolyte bags to choose from with individual sachets and flavors but other grocery stores offer these too. I take one sachet daily when I was in Spain I took two a day. AMAZON LINK here
Elevate the head of the bed
Compression stockings
Sit-to-stand recliners for safer transfers
A little caffeine can help in some cases
Physiotherapy exercises and regular exercise can build resilience over time
Talk to your doctor about dietary salt — sometimes a small increase helps, but this needs medical guidance
Two caregivers shared real examples that might sound familiar: one whose mother found relief from a herbal supplement (always run these by a pharmacist for interaction checks before adding anything new), and another whose husband gets lightheaded specifically during his Sunday training sessions. If that's you, Carol's advice was simple try an electrolyte drink beforehand, and track blood pressure a few times a day (yours and theirs) for a week or two so you have real data to bring to the doctor.
Excessive Sweating
Another autonomic symptom that catches people off guard. Tips from the group: stay well hydrated, dress in lightweight breathable layers, and keep cooling options on hand (a small fan, cooling towel, etc.) for warm days or overheated rooms.
Psychosis: Understanding, Not Fear
This is a hard one to hear about, but Carol wanted us to understand it clearly: hallucinations and delusions can occur in Parkinson's, and they are a side effect of the disease and its treatments — not a loss of mental capacity or "losing them." Recognizing this distinction can change how you respond in the moment, and it's always worth reporting to your neurologist, since medication adjustments are often part of managing it.
A Note From Us
This was a heavy session, and if you found yourself nodding along to more of this than you expected, you're not alone that's exactly why this group exists. So much of what we covered today doesn't get talked about anywhere else.
If anything here brings up questions specific to your situation, reach out to me directly and I'll help point you in the right direction.
We have one final session of the Summer pilot program Wednesday, July 22nd at 9am. Thank you for showing up for each other all the way through it. Keep an eye out for a short evaluation survey; your feedback genuinely shapes what we do next.
With you in this,
Christine & Carol
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