The Parkinson’s Journey – Chapter 7: The Impact of OFF Times: Finding Solutions

David Gebhart
Aug 27
6 min read

Living with Parkinson’s isn’t always about the visible tremors or the medications I take — sometimes it’s the quiet, heavy moments that are the hardest to process. When I’m in an OFF state, unpleasant and unexpected things can happen. These moments don’t just affect me physically; they can be emotionally difficult to handle, both for me and for those around me.

Often, when something happens, my wife Hayley will gently ask, “Are you okay?” And too often, my response is short and distant: “Of course I am. Why wouldn’t I be?” It’s a defense, a way of brushing past the reality of what just took place, even though deep down I know it isn’t that simple.

Over time, we’ve realized there are situations we rarely talk about openly. They’re not easy to share because they carry weight — the kind of experiences that leave us looking at each other in disbelief, quietly asking ourselves, “Did that really just happen?”

Unfortunately, yes. It did happen.

And today, I want to bring some of those hidden struggles into the light.

The Emotional Impact

When OFF Times Turn Heavy

OFF times aren’t just physically exhausting—they’re emotionally draining too. It’s not only the person with Parkinson’s who feels that weight; the caregiver carries it as well. I’ve learned this the hard way.

There are moments when Hayley asks me, “Are you okay?” and I brush it off with a cold, “Of course I am.” The truth is, I wasn’t okay. I was angry, embarrassed, and didn’t know where to direct my frustration. Too often, I unfairly directed it at the person standing by me—Hayley—the one person I should never take it out on.

A Difficult Moment

One of the hardest incidents happened when I tried to make it to the bathroom during an OFF period. My body wasn’t cooperating, I had no medication in my system, and despite crawling to get there, I didn’t make it in time.

I collapsed on the bathroom floor, completely drained, and couldn’t even get myself up. All I could do was hit the emergency button Hayley had installed. She rushed in, gave me medication, and stayed by my side until it began to work. I wasn’t able to shower afterward—just change clothes and wait until the next morning.

For me, it was humiliating. For Hayley, it was another reminder of just how unpredictable Parkinson’s can be.

The Caregiver’s Burden

That moment forced me to reflect. What if Hayley had hurt her back trying to lift me? What if she were the only one around and couldn’t physically manage? The truth is, caregivers already carry a heavy load. Their feelings get hurt easily because they never know what they’re walking into when we call for help. And yet, they show up every single time.

Some couples don’t even have family or extra support nearby. For them, the burden can be crushing. Community services, social programs, neighbors, and home care become vital lifelines in those situations. These are realities that need to be talked about openly.

What We Learned

From this incident, a few lessons became clear:

Have a system in place. We needed an emergency plan for bathroom accidents. Hayley found practical solutions, and we made rules for what to do during OFF times—so neither of us has to improvise in the moment.
Protect the caregiver. My choices shouldn’t put Hayley at risk. She is my partner, not my forklift.
Stay kind, even in anger. It’s too easy to lash out, but the anger belongs with Parkinson’s—not with the person who loves me most.
Accept help. One day, PD or something else will be what ends me. Until then, the fight is about making life manageable—for me, and for Hayley.

Getting Out of the Car with Parkinson’s

Today’s post is supported by D’Oro Devices, the makers of NexStride — a groundbreaking mobility aid designed to help with freezing of gait in Parkinson’s. NexStride provides both visual and auditory cues, which can make all the difference when your body refuses to cooperate. I’ve used it myself, and I can honestly recommend it to anyone struggling with freezing. (It’s currently available in the USA — and if you’d like to try it, you can use this link to save 10% on your purchase).

Now, onto today’s challenge: getting out of the car.

I had been delayed at the store, and by the time I reached the parking lot, my medication was wearing off. Looking back, I should have taken an extra dose when I realized what was happening. But I really wanted to capture this experience for others who may face the same challenge.

What did I learn? In Parkinson’s, “off times” are a test of resilience. You either sink or swim. For me, the key is learning from these moments — identifying what went wrong, planning better for the future, and being willing to adjust when things don’t go as expected.

My personal motto? Plan for the worst, but hope for the best.

Falling in the Bathroom and the Importance of Safety Planning

One of the hardest lessons I’ve faced with Parkinson’s is how unpredictable the body can be. Recently, I experienced an episode of orthostatic hypotension—where your blood pressure drops suddenly when you stand up—which left me unsteady. In the middle of it all, I lost my balance and ended up falling into the toilet. Kiwi, my loyal companion, was right there in the midst of it, which only added to the chaos.

Moments like this are more than just frustrating—they’re dangerous. They highlight the reality that Parkinson’s doesn’t just affect mobility when walking outside or getting out of the car; it follows you into the most private spaces of your home.

What did I learn?It became clear that we can’t just “hope” accidents won’t happen—we need to make real, physical changes to reduce risk. For me, that meant calling the occupational therapist, installing grab bars in the bathroom, and replacing the traditional bathtub with a walk-in shower. These changes may seem small, but they create safer environments and reduce both the physical and emotional toll of a fall.

Safety planning in the home isn’t about giving up independence; it’s about protecting it. By making adjustments before an accident happens, we can preserve dignity and peace of mind while lowering the chance of injury.

Conclusion: Turning OFF Times Into Lessons

Living with Parkinson’s means accepting that OFF times will come — sometimes quietly, other times like a storm. They can leave you frustrated, embarrassed, or even unsafe. But each difficult moment carries a lesson if we’re willing to face it honestly.

From the bathroom to the car, to the simple act of standing up, I’ve learned that the best way forward is planning, adapting, and protecting both myself and my caregiver. That means:

Having systems in place for emergencies.
Reducing risks inside the home with real, physical safety changes.
Protecting the well-being of the caregiver as much as the person with Parkinson’s.
Choosing kindness in the middle of frustration, and directing the anger where it belongs — at Parkinson’s, not at loved ones.

Parkinson’s will always challenge us, but challenges don’t have to define us. By talking openly about the messy, hidden moments, we take away some of their power. By planning ahead, we make them more manageable. And by leaning on support — whether from partners, community programs, or adaptive devices — we remind ourselves that we don’t have to face this alone.

We may not be able to control when OFF times arrive, but we can control how we prepare, how we respond, and how we move forward. That, to me, is where the real strength lies.

Sponsor Spotlight – D’Oro Devices

Today’s post is supported by D’Oro Devices, the makers of NexStride — a groundbreaking mobility aid designed to help with freezing of gait in Parkinson’s. NexStride provides both visual and auditory cues, which can make all the difference when your body refuses to cooperate.

I’ve used it myself, and I can honestly recommend it to anyone struggling with freezing. (It’s currently available in the USA — and if you’d like to try it, you can use this link to save 10% on your purchase).

A Note for Caregivers

Caring for someone with Parkinson’s during OFF times is physically and emotionally demanding. The frustration, the sudden urgency, and the unpredictability can leave you drained. Remember that your health matters, too. Take time to rest, seek support when you need it, and don’t carry the burden alone. Parkinson’s may affect one person’s body, but it impacts the whole household. Protecting your own well-being ensures you can continue providing care with patience and strength.

Medical Advice Disclaimer

I am not a doctor, and nothing in this post should be taken as medical advice. Always consult with your neurologist, movement disorder specialist, or healthcare team before making any changes to your treatment plan or daily routines. If you experience frequent or severe OFF times, talk to your doctor about possible adjustments in medication, timing, or other therapies. Professional guidance is essential for safe and effective Parkinson’s management.

Sources

1. National Institute of Neurological Disorders and Stroke (NINDS). Parkinson’s Disease: Challenges and Treatments.

2. Parkinson’s Foundation. Freezing of Gait in Parkinson’s.

3. D’Oro Devices – NexStride.