I’m just coming out of one of the most unpleasant and frightening experiences I’ve had since being diagnosed with Parkinson’s disease. The last eight to ten weeks have been brutal—physically, emotionally, and mentally. But as difficult as this period has been, it’s also forced me to learn something critically important, something I believe everyone living with Parkinson’s, and everyone caring for someone with Parkinson’s, needs to understand right now.
This is not a casual topic. This is not something to skim over.
Urinary tract infections (UTIs) in Parkinson’s disease are far more dangerous than most people realize. They can masquerade as disease progression, trigger falls, steal your energy, cloud your thinking, and quietly push you toward hospitalization if they’re missed.
What follows is not theory. It’s lived experience—mine—and supported by clinical understanding of Parkinson’s disease. My hope is that by sharing this openly, honestly, and clearly, someone else can avoid going through what my wife Hayley and I just lived through.
A Personal Reality Check
Living with Parkinson’s is already a full-time job. Adding another illness on top of it can feel overwhelming to the point of collapse. Over these past weeks, I became so fearful of falling that I spent much of my time crawling across the floor to get from room to room.
Yes—crawling.
My dignity took a hit. A big one. But we’ll talk about that honestly in a moment.
This blog is also the first entry in a broader series I’m creating about Parkinson’s progression and how I’ve learned to deal with it in real time. Parkinson’s doesn’t stand still, and neither can we. The goal is awareness, preparation, and protection.
Before going further, I need to acknowledge support. During this period, Comfort Linen played a major role in helping me survive nights when I could barely move. Their friction-reducing sheets and garments made it possible for Hayley to help reposition me when I couldn’t move myself. When you lose mobility, even small tools matter. I only recommend things I personally use and trust.
Accept Help: Listen to Your Caregiver
If you take nothing else from this article, take this:
Listen to your caregiver.
I didn’t.
And I paid for it.
Oxalates or UTI? The Dangerous Confusion
Around two months ago, I was dealing with severe involuntary movements, including oromandibular dystonia—jaw clenching that restricts breathing and causes real panic. Through diet changes, I successfully lowered oxalate levels in my body, and those particular symptoms improved significantly.
But something else didn’t.
I remained exhausted. Confused. Weak. Unstable. And I was laser-focused on the idea that I was still dumping oxalates. My wife Hayley kept telling me something wasn’t right—that this felt different, that it looked like a urinary tract infection.
I didn’t listen.
That’s on me.
I had never had a UTI before, and I didn’t recognize the signs. I dismissed them. I assumed I knew better. And in doing so, I delayed treatment and made the situation far worse than it needed to be.
Caregivers see things we don’t. They notice patterns. Changes. Declines. When they speak up, it’s not criticism—it’s protection.
To Hayley: publicly, and sincerely, I’m sorry for not listening sooner. Thank you for standing by me even when I pushed back.
Why UTIs Are Especially Dangerous in Parkinson’s Disease
Key Connections Between UTIs and Parkinson’s Disease
| Parkinson’s Factor | What Happens | Why It Matters |
| Autonomic Dysfunction | Parkinson’s disrupts bladder signaling | Leads to urgency, frequency, and urinary retention, increasing infection risk |
| Neurogenic Bladder | Impaired bladder emptying | Creates stagnant urine where bacteria can grow |
| Silent Infections | Fewer classic UTI symptoms | Infections may show up as confusion or fatigue instead of pain |
| High Complication Risk | UTIs trigger delirium, falls, hospitalizations | Often mistaken for Parkinson’s progression |
| Progression Impact | Recurrent infections worsen frailty | Accelerates cognitive and physical decline |
This is where education becomes critical.
UTIs behave differently in people with Parkinson’s. They don’t always show up the way you expect.
1. Autonomic Dysfunction and Bladder Control
Parkinson’s affects the autonomic nervous system—the system that controls automatic functions like heart rate, digestion, and bladder control. As a result, many people with PD experience:
- Urinary urgency
- Increased frequency
- Nocturia (frequent nighttime urination)
- Incomplete bladder emptying
I’ve never gone to the bathroom as many times as I did during this period. Nighttime became something I feared. Sleep was fragmented, shallow, and exhausting.
2. Neurogenic Bladder
Studies show that 27–80% of people with Parkinson’s experience lower urinary tract symptoms (LUTS). In my case, it felt like I always had to urinate—even immediately after going.
That constant signal drains energy, disrupts sleep, and increases fall risk.
3. Silent Infections
This is one of the most dangerous aspects.
Many people with Parkinson’s do not experience classic UTI symptoms like burning or pain. Instead, UTIs may present as:
- Sudden confusion
- Extreme fatigue
- Loss of balance
- Decline in daily functioning
I had confusion and lethargy in double doses. There were moments I broke down crying—not from pain, but from sheer mental and physical depletion.
4. Falls, Delirium, and Hospitalization
UTIs are one of the leading causes of delirium, falls, and emergency hospitalizations in people with Parkinson’s.
I did everything I could to avoid the hospital. I was terrified of going. But untreated, a UTI can force that outcome.
5. Impact on Disease Progression
Repeated infections compound frailty and cognitive decline. You start to feel decades older than you are. I often felt like an old man trapped in a body that simply wouldn’t cooperate.
When Symptoms Stack, Everything Collapses
Parkinson’s already drains energy. Add a UTI on top of it, and the batteries empty fast.
By noon, I was done.
My legs turned to jelly. Standing became dangerous. That’s when crawling became my safest option.
It was humiliating.
But it was also humbling.
Crawling taught me patience. It reinforced the importance of listening to my caregiver. And it made one thing crystal clear: I would do anything to prevent this from happening again.
Patience, Pull-Ups, and Losing Dignity
Here’s the part people don’t like to talk about.
I couldn’t control my bladder.
Right before my 52nd birthday, I was wearing adult diapers. I didn’t feel attractive. I didn’t feel normal. Depression crept in quietly.
Others noticed. Hayley noticed.
I wasn’t myself.
Getting out of bed to urinate became an exhausting ordeal. Often, Hayley had to physically help lift me because my energy was gone.
This is what UTIs can do in Parkinson’s disease.
But here’s the truth you need to hear:
This does end.
With testing. With antibiotics. With patience.
Prevention and Early Detection: What You Need to Know Right Now
UTI Risk: General Population vs. Parkinson’s Disease
| Factor | General Population | Parkinson’s Disease |
| Typical Symptoms | Burning, pain, fever | Confusion, fatigue, sudden decline |
| Detection Speed | Often early | Frequently delayed |
| Fall Risk | Low to moderate | High during infection |
| Hospitalization Risk | Lower | Significantly higher |
| Impact on Cognition | Usually temporary | Can cause prolonged delirium |
Practical Takeaways for Patients and Caregivers
| Area | What to Watch For | Action Step |
| Early Detection | Sudden confusion or decline | Request urinalysis immediately |
| Medical Evaluation | New weakness or instability | Do not assume Parkinson’s progression |
| Prevention | Dehydration or retention | Increase fluids, timed voiding |
| Bladder Support | Ongoing LUTS | Consider pelvic floor rehab |
| Holistic Care | Non-motor symptoms | Treat UTIs as part of PD management |
Early Detection Saves Lives
Caregivers should watch for:
- Sudden confusion
- Increased falls
- Fatigue without explanation
- Rapid functional decline
Get Tested Quickly
If something feels off, request a urinalysis. Don’t wait.
Prevention Strategies
- Stay consistently hydrated
- Use timed voiding strategies
- Consider pelvic floor rehabilitation
- Limit catheter use whenever possible
Managing UTIs is part of managing Parkinson’s. Non-motor symptoms can be just as disabling as tremors or rigidity.
A Note for Caregivers
If you’re caring for someone with Parkinson’s: your voice matters.
You are not “nagging.” You are not overreacting.
You are often the first line of defense.
Please trust your instincts.
Medical Disclaimer
I am not a doctor. I am sharing my personal experience living with Parkinson’s disease. Nothing in this article should be considered medical advice. Always consult a qualified healthcare professional regarding diagnosis, testing, or treatment decisions.
Sponsor Spotlight: Comfort Linen
During this experience, one thing became painfully clear: nights are often the hardest part of Parkinson’s—especially when illness stacks on top of PD. Limited mobility, frequent bathroom trips, and exhaustion can make even basic movement in bed feel impossible.
That’s why I want to highlight Comfort Linen, a sponsor I genuinely rely on. Their friction-reducing bedsheets and garments have made a real difference for me. On nights when I could barely move, these products helped reduce resistance so I could reposition myself—or so Hayley could help move me safely without strain.
This isn’t about luxury. It’s about dignity, safety, and reducing caregiver burden during the toughest moments. Comfort Linen has consistently been there for me when nights felt endless, and I give them my highest recommendation.
If you or your caregiver are struggling with nighttime mobility, their products are absolutely worth exploring.
Support My Journey
If my writing has helped you feel less alone, more informed, or more prepared, you can support my work through Ko‑fi. Your support helps me continue sharing honest, experience-based content for people living with Parkinson’s and their caregivers.
Final Thoughts
UTIs may seem minor. In Parkinson’s disease, they are not.
Recognizing subtle signs, acting quickly, and listening to caregivers can prevent unnecessary suffering, falls, and hospitalizations.
Thank you for continuing this journey with me.
