Mom

My mother was something of a hypochondriac. She constantly worried that she was suffering from one or more conditions at any given time. When she saw her primary care manager (PCM), she always had a list of complaints, typically resulting in one or two new medications and referrals to specialists.

More than once, I received a call from the nurse at the assisted living center where Mom and Dad lived to let me know she had talked to Mom’s PCM about her medications.

On occasion, I accompanied Mom to appointments with her PCM, and I always asked him to review her complete medication list to ensure all were necessary and played well together. Almost every time, he would eliminate one or more prescriptions.

I couldn’t understand why her medications were so hard to stay on top of. Why are we constantly revisiting this issue? Little did I know, I would learn firsthand just how hard it is to stay on top of your medications. Or more appropriately, I would learn just how easy it is to lose control of your medications, and what the consequences can be when that happens.

Then It Was My Turn

I was first diagnosed with high blood pressure in my twenties. I successfully got that under control and was able to stay off medications for several years, but eventually started taking two medications to manage my blood pressure. Fast forward a few years and I start seeing a urologist regularly, and he added a couple of prescriptions. Fast forward a few more years and I receive my Parkinson’s diagnosis, resulting in three different medications for that. As if that wasn’t enough, I end up going through angioplasty and receiving a stent in my widowmaker and three new medications to boot.

My VA neurologist initially prescribed 1 mg of ropinirole three times per day. The VA filled the prescription with 2 mg tablets, so I took half a tablet with each dose.

When I later transferred my care to a movement disorder specialist outside the VA, he reduced my ropinirole to 1 mg twice daily and added carbidopa/levodopa. My new ropinirole prescription came in .5 mg tablets, with instructions to take two tablets twice daily.

Everything went well until we started packing for our European vacation. Christine found a travel container that would hold all my medications, and I began using it several days before we left to make sure the system worked. I packed everything that I needed, but didn’t realize that I had grabbed an old VA bottle of 2 mg ropinirole tablets instead of a newer bottle containing .5 mg tablets. Since the tablets were nearly identical, I continued taking two tablets twice daily.

I did not discover the mistake until after we returned home. Instead of taking the prescribed 1 mg twice daily, I had been taking 4 mg twice daily, or 8 mg per day instead of 2 mg. I suspect that the severe brain fog I experienced daily during the trip is linked to this medication mix-up.

After returning home, I switched back to the correct bottle. Without realizing it, I abruptly reduced my daily dose from 8 mg to 2 mg.

About a week later, I discovered what had happened. My Google search revealed that ropinirole should not be reduced that sharply without medical guidance because rapid dose changes can cause serious withdrawal symptoms. Google also suggested that I contact Poison Control and my prescribing doctor immediately. I skipped Poison Control and called my neurologist. Because I had already been back on the correct dose for more than a week, he believed I was through the greatest risk and told me to continue taking the prescribed dose.

Fortunately, I experienced no serious consequences. But I came away with a new appreciation for how easily medication management can go wrong—even when you think you are being careful.

Medication mistakes and falls may seem like two different subjects, but they have something in common. Both can happen in an instant, and both can have consequences far out of proportion to the event itself. Following a Parkinson’s diagnosis, both can undermine trust in our ability to manage our own lives, something we once took for granted.

Trips and Falls

As we age, the chances of falling increase. According to the CDC, at the aggregate level, one in four adults over the age of 65 report falling during any given year, and studies show that the likelihood of falling rises gradually with age. This rise is tied to things that commonly accumulate with age: reduced strength and balance, difficulty walking, vision changes, medication side effects, blood pressure changes, poorer general health, environmental hazards, and less physical activity.

According to Dr. Michael Okun, “a first fall can be a sentinel event in Parkinson’s disease, meaning an event that may signal an important change in disease trajectory, independence, and future risk.”

Dad

Dad’s first visible sign of Parkinson’s disease was the development of right-hand tremors. His PCM dismissed the symptoms as just a part of getting older. Fast-forward a couple of years to a cold, frosty morning in northeast Alabama, on Iron Bowl Saturday. Dad walked across the yard to the mailbox and slipped on the ice-covered grass. He didn’t think he was hurt, so he jumped up, grabbed the mail, and headed back to his recliner, where he would spend most of the day.

At the end of the evening, Dad struggled to walk to the bedroom, and the following morning he was unable to walk to the kitchen for breakfast. A visit to his PCM yielded a referral, where an orthopedic surgeon would be the first to suspect Parkinson’s disease.

Long before he was diagnosed with Parkinson’s, Dad feared falling. Several friends had gone through hip replacements due to falls, and the thought of that scared him. He was always very careful, and fortunately he never had a serious fall. On two occasions, he lost his balance coming out of the bathroom in his assisted living suite, but he was able to lean into the wall and slide down onto the floor with no injuries. On another occasion, while sleeping in his lift-chair, he inadvertently triggered the lift function, and before he realized it, the chair dumped him onto the floor without injury.

Looking back, I’m convinced that Parkinson’s didn’t cause Dad’s fall that frosty morning. He slipped on ice-covered grass—something that could have happened to anyone. But his fall did change the direction of what was to follow. It exposed problems that could no longer be explained as normal aging, and eventually led to his Parkinson’s diagnosis. In that sense, his fall was a sentinel occurrence—an event after which things were never viewed quite the same way.

My First Fall After Diagnosis

About twelve years before I was diagnosed with Parkinson’s, I lived in a second-floor apartment for a couple of years. In addition to the front entrance, there was a private stairwell leading down to my garage. While moving out of that apartment, I fell three times while carrying boxes down the stairs. Each fall occurred on the bottom two stairs. Fortunately, in each instance, the box I was carrying broke the fall, and I wasn’t injured.

A couple of weeks ago, a fellow boxer in my Rock Steady Boxing class shared that he had taken a pretty serious fall. X-rays and an MRI showed that nothing was broken, but it took a cortisone shot to get him through the recovery.

Two days later, it was my turn.

My daughter, Jessica, and her Great Dane were staying with us for a few days. Bennie, our Mini-Golden Doodle, likes to aggravate her, so we keep a gate across the doorway between our living room and lanai. I had opened the gate so I could go to the kitchen, and my left foot caught the gate, resulting in a fall. Fortunately, I landed on top of the gate rather than on the floor. Thanks to the blood thinners I take since my angioplasty, I ended up with a nasty bruise on the inside of my left arm.

After a fall, most people check for broken bones, clean up any blood, and watch the bruises change colors. Following a Parkinson’s diagnosis, you examine the fall through a different lens, and it changes the questions you ask afterward. You examine the fall for evidence. Was it simply an accident, or was Parkinson’s somehow involved? Is my balance getting worse? Is this a sign of disease progression?

And on another level, what does this fall say about my future independence? Can I still trust my body and sense of balance? Is Christine now watching me differently?

My fall does not prove that my Parkinson’s has progressed. The fall had an obvious explanation. There was a gate in the doorway; my foot caught it, and I fell. It could have happened to anyone. But Parkinson’s has taken away the luxury of dismissing it without another thought. Now I pay attention to my balance. Is it changing? Am I catching my feet more often? Will the next fall be as forgiving?

The medication mistake created the same uncertainty. I thought I had a good system, but two bottles of tablets of different strengths showed me how easily that system could fail. Neither the medication error nor the fall caused serious harm, but both got my attention. Perhaps that is what makes something a sentinel occurrence: it didn’t have to end badly to warn that something deserves a closer look.

I once wondered why Mom’s medications were so difficult to manage and why Dad was so cautious about falling. Now I understand both of them differently. I have come full circle, and I’ve reached a place they once occupied and can now see what they saw.

None of this means that I can no longer trust myself or live independently. Christine and I will have to pay more attention, one pill, one step, and sometimes one bruise at a time.

If you follow us on Facebook or Instagram, you’re probably aware that Christine and I just returned from a seventeen-day trip to Europe. The trip was penciled in on our bucket list well before my Parkinson’s diagnosis. Thanks to that unwelcome news, and other complications that managed to appear, we kept kicking the can down the road. Sometime last fall, Christine’s sister, Cindy, invited us to go on a Viking River Cruise with them. We sidelined the kicker and started planning.

Before the Trip

To say that I was apprehensive about the trip is an understatement. As we began to plan, I had a chicken-and-egg moment. I was most worried about how Phil would affect the trip, but I realized the better question was, how will the trip affect Phil?

You might say that’s just semantics, and you might be right. But for me, it changed the way we planned the trip. The planning strategy went from trying to anticipate how the trip might be impacted by Phil, to taking steps to minimize the trip’s impact on Phil.

No two people experience Parkinson’s the same way. For many, it brings anxiety and slowly chips away at any semblance of self-confidence. While the disease doesn’t directly cause claustrophobia, it can make confined spaces feel even tighter. I experience all three, and the claustrophobia is the worst of them all. I was really worried about crowded planes and trains, narrow passageways, and long flights.

We decided to solve for those possibilities up front; after all, they were issues I knew could impact the trip. We booked the most comfortable seats on the planes and trains that we could get. We secured Premium Economy seats for the long flight to Frankfurt, and upgraded to Business Class on the long flight from Amsterdam to Toronto. We settled for economy for the shorter flights.

The standard staterooms on the river ships can be small. I knew that would be a big issue for me if I experienced insomnia, so we upgraded to a two-room suite. It would give me room to move around if Phil picked on me during the night. I packed a cane, just in case my right knee, in need of replacement, decided to scream at me. I was particularly worried about extended walks and not being able to sit for long periods. I pulled my old Walkstool out of storage with plans to hang it on my belt for that contingency. Fortunately, I never removed the cane or stool from my suitcase.

And we haven’t even talked about how I was going to transport my medications? How would I keep medications on schedule and deconflict meal times from medication schedules? How will the time zone changes affect medication effectiveness?

I needed to feel confident we had thought of everything. Best laid plans, you know?

During the Trip

I was determined to ease into our trip. I knew that a stressful departure would amplify my anxiety, so we made sure 90% of our packing was completed the day before our departure. We didn’t have to be at the Orlando airport until noon. I wanted to get up, relax a few minutes with a cup of coffee, and spend a bit of time with our Golden Doodle, Bennie. It was not to be.

The emails from the airline began arriving before I could push the start button on the coffee pot. Our flight to Philly was delayed due to a maintenance issue—a two-hour delay at first. Our flight schedule had a four-hour layover in Philly before our flight to Venice. Fingers crossed. We could make it work. The delay quickly increased, and it became evident that we wouldn’t make our connection. The stress-free morning was over.

Christine sprang into action. The poor travel agent with Viking should have called in sick that morning. We had planned three days in Venice, just the two of us, before we would rendezvous with our travel group in Lucerne, Switzerland. Four hours into that three-way negotiation between Christine, the airlines, and Viking, we were booked on a flight to Frankfurt later that evening with a four-hour layover before a short 90-minute flight to Venice. We would be in Venice in time for dinner.

Christine attempted to upgrade our flight from Premium Economy to Business Class, but it wasn’t to be. It turned out that the Premium Economy seats were comfortable. We had packed well. I had a Mitch Albom book to read, four movies downloaded on our iPad in case the airline selection wasn’t appealing, and Christine had purchased each of us a Bcozzy neck pillow—touted as “The World’s Most Comfortable Neck Pillow.” They were horrible. If you find yourself in Room 307 at the Renaissance Hotel in Lucerne, you might find them in the closet.

East Versus West, Time Zones, Sunrise and Sunset, and Medications

Conventional travel wisdom says that jetlag tends to be harder when traveling east because you lose time, thereby shortening the day. I’ve traveled from the U.S. through Europe, on the way to Southwest Asia, many times, and my body never got the memo. The combination of adrenaline and anticipation about what I would find when I landed always seemed to override that wisdom. The same was true for this trip.

We had an uneventful journey, landing at Marco Polo Airport in Venice in the late afternoon. We hired a private water taxi for a beautiful ride to the Venice Hilton, arriving in time for an early dinner. We both slept well, although it wasn’t as restful as we would have liked.

Balancing my medication schedule and minimizing off periods was a big concern. The Parkinson’s Foundation recommends that you maintain the prescribed intervals between doses when changing time zones during travel. That is sound advice to a point. I take smaller doses at night, and some meds I only take before I go to bed. Nighttime often brings the unfortunate pleasure of restless leg syndrome. Restless legs don’t automatically shift as you move through each time zone, so during the first few days, those symptoms kicked in a couple of hours before sunrise. On a couple of occasions, it kicked in during a bus ride. Once my legs finally realized they weren’t in Florida anymore, it was easier to manage.

My friend Phil also brought along some digestive complications. Constipation is a common nonmotor symptom of Parkinson’s. I’ll spare you the details, but they made knowing where the nearest restroom was more important than I would have preferred. I skipped an excursion into France on one occasion due to this issue.

Cobblestone, Stairs, Thin Air, and Dinnertime

The cobblestone streets across Europe were beautiful to look at, but less charming to walk on. The sidewalks were uneven and often slanted to the left or right just enough to require constant attention to each step. Early in the day, when rested and my dopamine levels were adequate, I managed it well. As the day progressed and the number of steps accumulated, fatigue brought rigidity. By late afternoon, Phil and the cobblestones always seemed to form an alliance. My stride would tighten, and my back would begin complaining.

Thanks to the old architecture across Europe, elevators are often not available, and where they are available, they are small and often have long lines. Stairs are a big concern for someone with Parkinson’s. Fortunately, I managed it well for the entire trip. The worst stairs we encountered were in St Mark’s Basilica in Venice. The Basilica was very crowded, and many of the tourists were not considerate of my slow pace. I frequently stepped aside and let them pass. It all worked out.

One of my concerns never materialized. Years ago, I had trouble adjusting to high altitudes during a series of visits to the Air Force Academy in Colorado. I wondered how I would handle the high altitudes of the Alps, now that I am traveling with Parkinson’s and a cardiac stent. To my surprise, I had no noticeable problems. I cannot say whether Parkinson’s had anything to do with that, but for once, Phil behaved himself.

Dinnertime was the hardest part of the day. By then, all the walking and general exertion would catch up with me. If I had not managed my medications and meals particularly well, it could be worse. I could sit at the table and at least appear to be listening, but in reality I was usually beginning to shut down. Christine could always spot it in my face as a thousand-yard stare kicked in. I wasn’t really sleepy and was not deliberately withdrawing from the conversation. I was depleted. Phil often won in the end.

People with Parkinson’s often experience off periods when the medications fail to do their job, which many different factors can cause. I experienced my worst off period on the final day of the river cruise. I rarely experience visible tremors, but my hands and right leg were very shaky that morning. The ship was making way towards Kinderdijk, Netherlands, a landmark I was particularly looking forward to. I had always dreamed of seeing the windmills. We could choose between a walking tour or an e-bike tour. We decided early that morning to sign up for the bike tour.

With a few hours of cruising before arrival in Kinderdijk, we all decided it was a good time to get our bags packed in preparation for the cruise ending the following day. Christine could tell I was not at my best, and she suggested that I rest on the couch in our stateroom while she got us packed in the bedroom. That was one of the moments when the suite proved its worth.

By the time we reached Kinderdijk, I was feeling better. The tour utilized pedal-assisted e-bikes, and they were great. Once we started riding, I felt as though I had come back to life. I loved the ride, and the windmills did not disappoint. I thought I was doing remarkably well.

Then I turned in the bike.

The moment I stepped off the bike, I realized just how depleted I was. The motor had helped carry me farther than my body was prepared to go. Now we had a 15-minute walk back to the ship, and Christine and I may have been the last passengers to board. I had made it through the tour and enjoyed every minute of it, but Phil presented the bill afterward.

Amsterdam and the Journey Home

Following the windmill tour, we had a final dinner with our group and said goodbye to Chet and Debbie, who would be heading to the airport at 4:30 AM the following morning. Bob and Cindy met us for breakfast before they headed to the airport. Christine and I were scheduled to stay another two days in Amsterdam. I have to admit, part of me wished we were going home with everyone else.

We were both tired. Viking arranged transportation to the Pulitzer Hotel, where we had to kill a couple of hours before our room was ready. Once we checked in, we took a nap, then slept late the following morning. Christine had arranged tickets to the Amsterdam Museum, but by then we were done trying to prove anything. We took an Uber instead of walking. After the museum, we took another Uber back toward the hotel and found somewhere nearby for dinner.

At that point, all that stood between us and the trip home was one more night’s sleep and a wake-up call.

What Phil Didn’t Take

A couple of days before we were scheduled to fly to Venice, Christine tripped and fell as she was leaving a real estate closing with one of her clients. She ended up with a rather large hematoma on her shin and bruising around her ankle, necessitating a trip to urgent care. The x-rays showed that nothing was broken, but the doctor warned us that the hematoma would likely take a couple of weeks to resolve—roughly the length of our trip.

Christine was determined that the injury was not going to interfere with our plans. She navigated the cobblestones, climbed all the steps, kept up with the tours, and rarely complained. Most evenings, I stopped by the hotel or ship’s ice machine and filled the ice pack that Christine had added to our suitcase after her fall. Through it all, I kept a watchful eye for any sign that Phil was gaining ground—the tightening stride, the distant look at dinner, or the moment when I had simply run out of gas.

One thing the trip taught me most clearly: Parkinson’s has made me more dependent on Christine in ways I do not always like to admit, but the trip never became a story about one healthy person taking care of one sick person. We took turns helping with the load.

Looking back, I’m happy to say that Phil did not ruin the trip. I wish I could have abandoned him somewhere along the Rhine, but that was not to be. He was always present in the fatigue and rigidity, restless legs, and the moments when all I could muster was a thousand-yard stare.

He didn’t, however, steal the trip.

We rode a gondola through Venice, climbed thousands of feet above sea level at the Schilthorn, traveled by train through Switzerland, cruised the Rhine, and rode e-bikes past the windmills of Kinderdijk. I did more than I feared I could do, though not always without paying for it later. Christine did it all with a bruised and swollen leg, and somehow we both kept moving.

By the time we came home, I learned that the journey had affected my Parkinson’s too. While it tested my limits and exposed some weaknesses, in the end it returned some of the confidence Phil had been quietly chipping away at. It also reminded me that rest is not surrender, an Uber is not defeat, and changing the plan does not mean abandoning the experience.

We came home tired, bruised, and ready for our own bed, but grateful that we went. Phil came home too, of course.

He still did not help with the luggage.

Then came a Parkinson’s diagnosis.

It turns out Parkinson’s comes with its own language, and the vocabulary test never seems to end. Researchers estimate that smell impairment affects a large majority of people with Parkinson’s, often in the range of 75–90%, and sometimes higher depending on how it is measured. There’s a word for that. Actually, there are several:

• Anosmia is the complete inability to smell.

• Hyposmia is the partial loss of the sense of smell, which appears to be more common in Parkinson’s than complete anosmia. A person may still detect strong odors but miss subtle ones.

• Parosmia is when odors are perceived incorrectly. Coffee may smell burnt, for example, or familiar foods may smell wrong.

I have not been tested to determine the severity of my loss of smell, but it seems to fall into the hyposmia category and is worsening over time. A few months ago, Christine started complaining that she occasionally smelled propane in our backyard, where our propane tank is buried. I couldn’t smell it. Five hundred dollars’ worth of propane later, it turned out she was right. Note to self: when your wife says she smells propane, believe her.

My dad’s loss of smell

Long before my dad was diagnosed with Parkinson’s in his 70s, he would comment that foods he had always enjoyed no longer tasted the same. At the time, I thought of that as just another part of getting older. Food changes. Taste changes. People change. But now I’m sure Parkinson’s was changing the meal long before Parkinson’s had a name.

Dad was diagnosed with Parkinson’s by a neurologist, but after that, Parkinson’s was mostly managed from a distance. There was no neurologist in my hometown. Seeing one meant travel, and Dad rarely went back after the diagnosis. His primary care doctor handled most of his care, and he seldom referred Dad back to the neurologist.

Parkinson’s is not a condition that stands still. Symptoms evolve. Medications need adjustment. Non-motor symptoms appear. Eating, sleep, movement, mood, swallowing, weight, and cognition can all become part of the picture.

As Dad’s symptoms progressed over the eight to ten years before he died, eating became more difficult. Tremors and muscle rigidity made eating mechanics harder. To my knowledge, he never had difficulty swallowing, but eating still became a chore. Spending his last five years in assisted living, he ate in a large dining room with other residents of the facility. He would eat a few bites and then push away from the table due to the difficulty with eating mechanics. I also think he was embarrassed because he would often spill food.

When I visited, I would usually take him to the BBQ Place & More, a local favorite of his. He usually ordered their hamburger steak plate or Brunswick stew. In the photos above, the photo on the left is Dad from his sixties, when he weighed somewhere around 225 to 235 pounds. That is the way I remember him for much of my life. A big man. Solid. Strong.

The second photo was taken about 15 months before he died. I do not know what he weighed then, but he had lost a lot. In the picture, he is sitting at the BBQ Place & More with a plate of hamburger steak, baked beans, and potato salad in front of him. He had a smile on his face, as he usually did when I took him there to eat. He enjoyed being there. He enjoyed the outing. He enjoyed the company. But in the end, he left a lot of food on the plate.

Dad lost a lot of weight over the last 18 months of his life. I cannot know with certainty how much of that was Parkinson’s, how much was reduced appetite, how much was the physical effort of eating, or how much was simply the natural decline that can come near the end of life. But from where I sat, I believe malnutrition became part of the chain of events that led to his death. I do not know whether anyone ever used that word. I do not know whether anyone connected his loss of smell to his loss of appetite. But I know what I saw. He was eating less, losing weight, and growing weaker.

Dad’s death certificate listed Parkinson’s as the cause of death. That is both simple and incomplete. A death certificate does not show the long road that led up to it. It does not show the meals left unfinished, the weight lost over time, or the way food changed from pleasure into effort. It does not show the BBQ Place & More, where he could still smile sitting in front of hamburger steak, baked beans, and potato salad, yet leave much of it on the plate.

Now I see it in myself

Watching Dad back then, I did not fully understand what I was seeing. I knew he was eating less. I knew he was losing weight. I knew meals that should have brought comfort and pleasure seemed to bring less of both. At the time, I did not have the vocabulary for it, and I certainly did not understand how much of what we think of as taste is really tied to smell. Now I do. Now I have Parkinson’s too, and I can feel some of that same story beginning to unfold in my own life.

My sense of smell has diminished, and with it, some of the enjoyment I once got from food. Things I have always loved no longer taste the same. Or maybe more accurately, they do not feel the same anymore. The experience is flatter. Less satisfying. Less complete. I still eat, but I can feel the difference. A meal does not always call to me the way it once did.

Since my diagnosis, I have lost around 20 pounds. I am not complaining. I needed to lose some weight. I have been heavily involved in Rock Steady Boxing and other exercise since my diagnosis. I’m sure some of the weight loss is the result of moving more, working harder, and trying to stay a step ahead of Parkinson’s. That kind of weight loss does not worry me.

What worries me is the possibility that some of it is coming from eating less because food is no longer as enjoyable. I would not mind losing another five to ten pounds, but I do not want to get there because Parkinson’s has quietly made eating less appealing, or because I am not taking in enough food to stay strong and healthy. There is a difference between losing weight because I am exercising and losing weight because I am under-eating, and I need to be able to halt my weight loss once I reach my desired weight.

Reengineering Flavor

One food that has surprised me is steak. A properly cooked steak used to be one of life’s reliable pleasures. But with my diminished sense of smell, I do not enjoy it as much as I once did. It is still steak. I still know what I am eating. But the experience is not what it used to be.

Which brings me to a confession that some steak lovers and most chefs may regard as a moral failing: I have tried adding steak sauce — Heinz 57, no less — to make steak more enjoyable. It helps make it more appealing.

Somewhere, a steak chef just fainted.

I know. I know. For many chefs, putting steak sauce on a good steak is somewhere between bad manners and blasphemy. In better days, I might have agreed with them. But Parkinson’s changes the equation. When aroma and flavor no longer show up like they used to, a little extra punch from a sauce can help make the meal more worth eating. So yes, I now find myself in the awkward position of defending Heinz 57 as a medical accommodation.

The image above helps me keep the subject light, but the reason behind it is serious. If loss of smell makes eating less enjoyable, then I need to learn how to make food appealing in other ways. A food that depends mostly on aroma for its appeal may not hold up as well for someone with hyposmia. A food with bold seasoning, heat, tang, salt, or strong texture may do better.

So now I find myself researching something I never expected to have to research: how to choose and prepare healthy food that does not depend so heavily on smell for the full experience. That is not a small adjustment. Food is not just nutrition. It is habit, enjoyment, comfort, memory, and culture. It is part of how we live. So learning how to eat differently is not just a dietary issue. It is also an emotional and psychological adjustment.

Learning how to make food worth eating

There is a lot of information available about what people with Parkinson’s should eat. Mediterranean-style diets. Protein timing. Fiber for constipation. Hydration. Weight management. Bone health. Heart health. Brain health. But I have found much less information about a different question: how do you prepare food so that a person with a diminished sense of smell still wants to eat it?

I contacted the Parkinson’s Foundation Helpline and asked about this exact issue. The suggestions they provided were extremely helpful, but they were similar to the general advice given to people with smell and taste loss from other causes: experiment with texture, use stronger herbs and spices, add citrus or vinegar, try stronger-flavored foods, and pay attention to hydration and dry mouth. They also suggested that olfactory training, sometimes called smell training, may be worth trying, and that working with a dietitian or nutritionist could help identify which tastes, textures, and seasonings still work.

That makes sense to me. But it also confirms the gap I am trying to understand. The problem is not just knowing what is healthy. The problem is learning how to make healthy food appealing enough to eat when Parkinson’s has turned down the volume on smell and flavor.

Dr. Michael Okun and Emily Truscott have a new book coming out called The Parkinson’s Plate: A Health and Diet Guide to Manage Your Journey. I am highly interested in it and optimistic that it may provide some of the insight I am looking for. Time will tell. From the descriptions I have read so far, it sounds like a practical guide to nutrition and cooking for people with Parkinson’s. What I do not yet know is whether it specifically addresses the question that has become personal for me: how do you choose and prepare foods that remain enjoyable when the sense of smell is diminished? I’ve preordered a copy.

I’ve also discovered some useful resources from outside the Parkinson’s world. Cancer patients can also experience changes in taste and smell from treatment, and during COVID, many people lost their sense of smell and taste. Out of that came resources focused not just on nutrition, but on making food enjoyable again. One that caught my attention is Taste & Flavour from Life Kitchen, created by chefs Ryan Riley and Kimberly Duke. Life Kitchen originally worked with cancer patients who had lost enjoyment of food, then applied many of those same ideas to people dealing with loss of smell and taste after COVID. Their approach focuses on things like umami, texture, temperature, acidity, spice, and other forms of sensory punch that do not depend entirely on smell.

That is the kind of information I am looking for. Not just what should I eat? How do I make myself want to eat it? Because with Parkinson’s, those can become two very different questions.

I cannot know whether better information would have changed Dad’s final chapter. Maybe it would have. Maybe it would not. But I know this much: I am paying attention now. I am paying attention to my appetite. I am paying attention to my weight. I am paying attention to the foods I no longer enjoy the way I once did. And I am trying to learn how to adapt before “I’m not hungry” quietly becomes “I’m not eating enough.”

From where I sit, that seems worth learning.

I recently had my first follow-up appointment with the same MDS at the Fixel Institute. This one lasted 59 minutes — not 71 this time, but still far more attention than many patients get these days. The first appointment helped point us in the right direction. The follow-up resulted in a series of adjustments. I’m learning that Parkinson’s care isn’t a straight line.

The Baseline Starts Paying Off

At my first appointment, my UPDRS motor score was 26. At this follow-up, it was 12. That sounds impressive, and in one sense it is. But let’s put it into context.

The first score was taken sans medication. Twenty-four hours before that appointment, I stopped taking prescribed medications so the doctor could evaluate my symptoms and establish a baseline. This time, I was evaluated after being on the medication regimen of carbidopa/levodopa and ropinirole prescribed after that evaluation.

So no, the drop from 26 to 12 isn’t Parkinson’s packing up and heading out of town. That would be great, but Parkinson’s doesn’t work that way. What I do take from it is this: the medication seems to be helping, and the baseline from that first visit is already doing exactly what a baseline is supposed to do. It gives us something to compare against.

The Number Isn’t the Whole Story

Even with the lower score, Parkinson’s hasn’t exactly stepped politely aside. The exam still showed right-sided rigidity and bradykinesia, and my right hand still doesn’t always keep up with what my brain wants it to do. Afternoons are often tougher than mornings. By dinner time, the day sometimes starts catching up with me. Cutting food at a restaurant can still be awkward. Medication timing matters; protein can interfere with some doses.

So can everything else.

Pain from something unrelated — in this case, a recent right shoulder injury — can muddy the waters and make it hard to tell what’s Parkinson’s, what’s orthopedic, what’s fatigue, and what’s just being a 63-year-old guy whose body has surpassed the warranty period. One thing I’m learning is that Parkinson’s rarely shows up as one neat, isolated problem. Sometimes it is layered on top of arthritis, old injuries, poor sleep, restless legs, medication timing, stress, travel, cardiac rehab, and whatever else life decides to throw into the mix.

Very rude of life, honestly.

When Parkinson’s Catches Up

Travel has its own set of challenges.

I learned that during our trip for my son Patrick’s wedding. It was a wonderful weekend — the kind where you are fully engaged, surrounded by family, caught up in the moment, and having such a good time that you almost forget about the thing you live with every day.

Almost.

Parkinson’s can be relentless, but sometimes joy, adrenaline, focus, and a genuinely good time can mask the symptoms for a while. Maybe pleasure and excitement help squeeze a little extra dopamine out of the parts of the brain still able to produce it. Maybe being fully absorbed in the moment simply distracts you from noticing every symptom. I don’t know the exact science of it. I just know what it felt like.

On the evening of the wedding, I missed my 5:00 p.m. medication and didn’t remember to take it until around 11:00 p.m. For a while, the celebration carried me. Then Parkinson’s caught up, and let’s just say it did not arrive quietly, politely, or bearing gifts from the registry.

That night was miserable.

It reminded me that even when I’m having a great time — especially when I’m having a great time — Parkinson’s is still keeping its own schedule. I may get distracted from it. I may even feel like I outran it for a few hours. But missed doses have consequences, and Parkinson’s has a way of collecting later.

Care Is Mostly Calibration

There wasn’t a huge reveal during the follow-up appointment. No new label. No lightning bolt moment. It was a conversation about the everyday stuff that makes Parkinson’s complicated, and it started with a simple question: What symptoms are the most problematic for you?

There were several to choose from: medication timing, right-hand dexterity, restless legs, sleep, balance, afternoon fatigue, exercise, and what happens when real life refuses to organize itself around a medication schedule. During the first appointment, we built a plan. The follow-up examined what happened when that plan had to survive Tuesday afternoons, wedding receptions, travel, joy, distraction, and real life.

The plan coming out of this visit wasn’t flashy. Adjust the carbidopa/levodopa dose. Pay more attention to timing. Shift ropinirole toward the evening to help with restless legs. Check ferritin. Have a backup sleep option. Watch blood pressure. Wear the hearing aids.

That last one made me laugh a little, mostly because doctors have an irritating tendency to be right about things I’d rather ignore.

But that’s the value of specialized care. A movement disorder specialist isn’t just asking, “Do you have Parkinson’s?” He’s asking, “How is Parkinson’s showing up in your actual day-to-day life, and what can we tweak?” That’s a very different approach.

Specialized Care, Shared Care

Going forward, I’ll alternate appointments between Dr. Remz and a physician assistant who helps manage his caseload. Because his schedule is packed, getting back on his calendar can mean waiting seven or eight months. That’s not a criticism of him or the Fixel Institute. If anything, it says a lot about the demand. There are simply too many Parkinson’s patients and not enough movement disorder specialists.

So the care model becomes more of a team effort. I’ll see the PA between visits with Dr. Remz, and I can communicate with the team through the patient portal as questions arise. That’s reassuring, but it’s also a reminder that even when you get into a high-quality center, specialized Parkinson’s care isn’t unlimited. The system stretches. The team shares the load.

Getting a movement disorder specialist doesn’t mean I stop managing my own care. It means I finally have a better team helping me do it. Going forward, I have to describe symptoms clearly, ask better questions, track changes, and use the portal when something needs attention between visits.

The Crockpot and the AM Radio

When I wrote about the first visit, I focused on how unusual it felt to receive that much careful attention. That appointment gave me a clearer picture of where I stood. This follow-up answered a different question: now that we know where I started, what happens next?

Since diagnosis, Parkinson’s care becomes more about management — understanding how it behaves, less about the snapshot and more about the trend line.

Parkinson’s care isn’t a crockpot recipe. You don’t just toss in medication, set it on low, and come back eight hours later expecting everything to be perfectly seasoned.

Managing Parkinson’s is like tuning an old AM radio while driving down a bumpy road in your grandfather’s Oldsmobile. You get static. You adjust. The signal gets better. Then the road changes, and you adjust again.

Exercise Still Matters

One encouraging thing is that when I stay active — especially at Rock Steady Boxing — I generally do better. That doesn’t mean exercise cures Parkinson’s, and it doesn’t mean I’m outworking the disease or sweating my way back to the person I was before all this started.

That has been the consistent message from the beginning, and inconveniently, I have to do it consistently. Some days that feels empowering. Other days, it feels like just one more thing on the calendar. I can fully believe exercise is essential and still occasionally wish the best treatment involved a recliner, a remote control, and a doctor-approved nap.

Sadly, no one has written that prescription yet.

From Where I Sit

So this update isn’t dramatic. No huge revelation. No movie-scene moment where the music swells, and the doctor announces, “We’ve solved it.” The first appointment gave us a baseline. The follow-up gave us a chance to use it. The number improved. The disease didn’t disappear. The work continues.

And now the next phase is becoming clearer: medication timing, continued exercise, better sleep, symptom tracking, portal messages, PA visits, and periodic check-ins with the movement disorder specialist.

That may not sound like a dramatic storyline, but for now, it’s the real one.

Living with Parkinson’s isn’t one appointment. It isn’t one prescription. It isn’t one score on an exam. It’s a long series of course corrections. Some are medical. Some are practical. Some just require me to keep paying attention, keep asking questions, and keep showing up.

For now, I still have a map. I still have a team. And I still have some say in how I travel the road ahead.

Last month, I represented the Foundation at the Fixel Institute’s 24th Parkinson’s Symposium in Gainesville, Florida. People living with Parkinson’s—and the people caring for them—don’t come looking for pamphlets. They come looking for answers, for direction, for something that helps them make sense of what they’re facing.

At one point, several people gathered around the table, flipping through materials, asking questions, and trying to sort out what might actually help. Off to the side, I noticed a woman quietly scanning the table. Not browsing… searching. I asked if she was familiar with the Parkinson’s Foundation—my typical first question. She said she was, and when I asked how I could help, she hesitated for a moment before beginning to tell me about her husband. He had been living with Parkinson’s for several years, and his symptoms had progressed into the later stages of the disease.

I recommended a couple of guides that I thought might be helpful. She nodded and told me she already had them. She had been here before. Then she told me what she was really looking for.

She is the sole caregiver for her husband, and as his disease has progressed, the support around them has not. Family doesn’t check in the way they used to. Friends have stopped calling. People from their church—people who had once been a steady part of their lives—no longer stop by.

“The phone doesn’t ring anymore,” she said.

In that moment, it became clear. She wasn’t looking for information. She was looking for something that had quietly gone missing.

This isn’t just a Parkinson’s story. It’s a human behavior story.

Before going too far, it’s important to acknowledge that this isn’t unique to Parkinson’s. Chronic illness—whether it’s Parkinson’s, cancer, heart disease, dementia, or even the natural progression of aging—can force people to confront things they’d rather keep at arm’s length. Mortality. Vulnerability. The realization that life doesn’t always follow the plan we expect.

It isn’t really about the diagnosis. It’s about how people respond to visible vulnerability. For many, it’s simply too heavy. Rather than processing it, they avoid it. Visits become less frequent. Calls get shorter. The circle of close friends quietly shrinks.

Most often, people pull away out of discomfort, not cruelty. It’s not because you did anything wrong, and not because they don’t care. More often, it’s because they don’t feel they have the capacity—emotionally, mentally, or relationally—to walk alongside someone dealing with illness or advanced age.

Changing Seasons

A diagnosis doesn’t just change your life. It moves you into a different season—whether you’re ready or not. And before people step into that new season publicly, they often pause, unsure of who will come with them.

It’s common for people to keep a medical diagnosis private at first. That hesitation has less to do with the disease itself and more to do with how others might respond. They’re not just processing what this means for them—they’re anticipating what it might mean for their relationships. They wonder who will understand, who will minimize it, and who might quietly drift away.

Because once you say it out loud, you’re not just sharing a diagnosis—you’re inviting people into a new season of your life. Not everyone will be willing, or able, to step into it with you.

What People with Parkinson’s Experience (But Don’t Always Say Out Loud)

There’s more to Parkinson’s disease than what meets the eye. Most people associate Parkinson’s with visible symptoms—tremors, slowed movement, changes in speech, or difficulty walking. In the absence of those visible signs, it’s easy for others to assume things aren’t that serious. Comments like “you don’t look sick” or “you seem to be doing fine” are often meant to reassure, but they can unintentionally minimize what someone is experiencing.

What many people don’t see—or don’t understand—are the non-motor symptoms that often appear first and, for many, are the most difficult to manage. Fatigue that doesn’t go away with rest, cognitive changes and mental fog, sleep disruption, anxiety, and the sheer effort required to move through a normal day can be just as challenging, if not more so, than the visible symptoms.

Early on, people tend to rely on a simple and flawed equation: if they can’t see it, it must not be that serious. Most aren’t trying to dismiss what you’re going through; they’re trying to make sense of something that doesn’t fit their expectations. They expect illness to be visible, and they often compare it to what they’ve seen before. If your experience doesn’t match that mental picture, it can be difficult for them to understand.

As the disease progresses, that changes. The motor symptoms become more visible and harder to ignore. Movements slow, balance shifts, and everyday tasks require more effort. At that point, some people respond not by leaning in, but by stepping back. They may not know what to say or how to act. They may feel uncomfortable, or they may be confronted with their own sense of vulnerability. Whatever the reason, the result can feel the same—distance.

There should be a guide for this

Organizations like the Parkinson’s Foundation and the Michael J. Fox Foundation provide a wide range of excellent resources for people living with Parkinson’s and for caregivers. They also offer guidance on how to share a Parkinson’s diagnosis—how to have that conversation, what to say, and how to approach it with others.

But there isn’t much written for the people on the other side of that conversation—the person who has just heard a friend, family member, or coworker say the words, “I’ve been diagnosed with Parkinson’s.”

There should be a guide for them. Not a medical guide, but a practical one. Something that helps answer the questions they don’t know how to ask. What should I expect? What actually changes—and what doesn’t? What helps? What doesn’t?

And maybe just as important, what not to say.

Not because people mean harm, but because they don’t always understand the impact of their words. Comments like “you don’t look sick,” “at least it’s not that bad,” or “stay positive” are usually well-intended, but they can unintentionally minimize something the person is still trying to process.

A good guide would also offer something just as important—how to show up. It would remind people to check in, even when they don’t know what to say, and not to disappear when things become harder to understand. It would encourage them to adjust to a different pace and to stay connected to the person, not just the version of them they’re used to.

Because the truth is, most people aren’t trying to get it wrong. They just haven’t been shown how to get it right.

In the meantime…

In the absence of that kind of guide, I offer an alternative.

I recently read Oh Crap! It’s Parkinson’s, A Rebel’s Guide to Taking Back Control of Your Life, written by Dr. Sara Whittingham. Sara is a physician, Air Force Veteran, Ironman triathlete, and Parkinson’s advocate who was diagnosed with Parkinson’s at age forty-six. I had the opportunity to meet her and hear her speak at the Parkinson’s Policy Forum last month, and she is a compelling and thoughtful storyteller.

While she is a doctor, her book isn’t filled with clinical language or medical instruction. Instead, it is filled with lived moments, stories, and insights that are rarely found in traditional medical texts. It reads like a conversation with someone who has been there—someone willing to share what she has learned along the way.

It’s a book that anyone can read—people with Parkinson’s, caregivers, friends, and family members alike.

For someone newly diagnosed—or for a caregiver—there’s a practical way to use it. Consider picking up a couple of copies to pass along to friends, family, or coworkers when you share your diagnosis. Some people may not want to read a 269-page book, so highlight the sections that you want them to read and understand.

Start there.

Many will end up reading more than you expect. It’s that kind of book.

Pass it along. And when you do, don’t forget to ask for it back. There will be others you’ll want to share it with because understanding doesn’t happen automatically. Sometimes it has to be handed to people.

Coming full circle

What the lady at the symposium was experiencing isn’t unique. It’s something many people quietly live through—watching their world grow smaller, not all at once, but little by little. The phone rings less. The visits become less frequent. The circle tightens.

Not always out of cruelty, but often out of discomfort.

And unless someone explains it—really explains it—most people won’t even realize they’re doing it.

In one meeting, a young staffer answered without hesitation. His understanding of Parkinson’s was that it’s an old man’s disease. It wasn’t said with any malice. He was just revealing his baseline understanding of Parkinson’s. That’s native perception. Not researched or deeply examined—just what feels true from where he sits.

From there, we did what advocates do. We told our stories. Diagnosis. Progression. Care. What daily life actually looks like. We tried to compress something that unfolds over years into a few minutes across a desk. And to their credit, it worked—at least in the moment. They listened. They leaned in. Many asked better questions. More than once, I heard some version of, “We didn’t realize how significant this is.” Those were the good meetings. That’s what influencing hearts and minds looks like. You can feel the shift while you’re sitting there.

We quickly learned that how you tell the story matters. Some stories land because they’re personal. Some stick because they create a picture you can’t easily shake. One advocate described Parkinson’s as a thief. He’s been living with it for more than five years, and he can feel it taking things—slowly, quietly, piece by piece.

His symptoms are progressing. His movement disorder specialist has started talking to him about brain surgery—Deep Brain Stimulation (DBS) is a surgical treatment for Parkinson's disease that uses a pacemaker-like device to send electrical pulses to specific brain areas, reducing motor symptoms like tremor, rigidity, and slowness. He didn’t talk about that part for long. Instead, he said what he wanted. He wants to dance at his grandkids’ weddings. That’s the part that stays with you.

Another advocate stood in for his mother, who lost her battle with Parkinson’s. He’s not living with the disease himself, but he’s living with the aftermath of it. He made it simple. He’s going to keep fighting until there’s a cure. No qualifiers. No timeline. Just a line drawn in the sand.

Those kinds of stories do something different. They give the issue a face, a future, a cost. They make it harder to keep Parkinson’s in the abstract.

I told my story about trying to use AI to generate an image for a blog post—a young boy, riding a bike through a cotton field while a plane sprayed pesticides overhead. AI refused to create the image because it wouldn’t generate an image that puts a child in danger. That stuck with me. If AI “knows” enough to flag that scenario as harmful, why are we still debating what chemicals like paraquat do to people? Yes, it was a corny story, but you could feel that one land.

Another advocate didn’t need words. He had undergone DBS surgery. Using the app on her iPhone, his wife turned the device off, right there in the room. Within seconds, the tremor returned. The loss of control was visible, immediate, and undeniable. It got quiet. You could feel the weight of it. I think we all wiped a few tears—I know I did. That’s influencing hearts and minds in a way data alone never will.

But even those moments have limits. Each meeting ended, and we said our goodbyes. In some cases, the next group arrived as we were leaving. The next issue took center stage. The staff quickly reverted to a world where Parkinson’s is one priority among many. We each headed back to a world where it isn’t optional.

That’s where the difference shows up.

You can change what someone thinks in a conversation. Changing what feels normal to them—that’s something else entirely. That’s changing native perception.

One meeting with Senator Rick Scott made that clear. He was supportive and engaged. He understands how this process works. At one point, an advocate tried to make the issue personal by talking about his grandchildren and the idea that they could face Parkinson’s one day because there is no cure. The Senator didn’t take the bait. Instead, he reframed the conversation.

He discussed competing priorities, limited funds, and the realities of the budget. Then he told us something that stuck with me more than anything else I heard all week: our advocacy matters—but we have to be the squeaky wheel. We have to be louder than the other voices asking for the same dollars, the ones he heard before, and the ones he’ll hear after. That wasn’t pushback. The Senator was explaining his job description.

For me, the takeaway was that you can’t change a person’s native perception in one meeting, and you don’t do it with one powerful story, no matter how good it is. We will have to show up again, and again. We will have to follow up and keep telling stories that are easy to remember and hard to ignore.

Different voices sometimes, same message. Over time, those moments will begin to stack. The goal is to transform what once felt like just another issue into something that feels more familiar, harder to set aside, and a little more present in the background of every decision.

From where I sit, Parkinson’s isn’t an issue I visit. It’s the house I live in. My dad lived here before me—diagnosed in 2005. He grew up a farm kid who spent his life around agriculture and later worked for General Electric. During his lifetime, he was likely exposed to chemicals such as paraquat and PCBs, long before we understood the risks. He died in 2016. Now here I am. My exposures include growing up near agriculture, where pesticides and herbicides were used frequently as well as exposure to burn pits during military service. That connection isn’t abstract to me. It’s not a statistic. It’s the baseline I live from. That’s my native perception.

And that’s the gap we’re trying to close. Because on the Hill, Parkinson’s is one issue in a long line of issues. In my world, it’s the backdrop to everything. So we’ll keep showing up. We’ll keep telling the stories that stick—the ones they’ll remember later, the ones that come back to them when the next meeting starts.

Our stories got us in the door. They got us heard. I know that on many levels, we influenced hearts and minds, but changing native perception is the greater goal. It’s what will bring us back. It’s a paradigm shift that will ensure the issue follows them after we’ve left the room.

From where I sit, that’s when advocacy starts to work—not when they understand it, but when they can’t quite forget it.

Last flight out of DC on a Gov’t fare… On to the next chapter. #retirement.

Two weeks later, Christine and I were sailing in the British Virgin Islands, celebrating the end of my civil service career. We had no idea that the next chapter would carry a different kind of reality, or a different kind of responsibility.

As it turned out, that wasn’t my last business trip to Washington.

COVID happened. A few months later, I accepted a consulting role supporting U.S. Customs and Border Protection. Over the next three years, I made several trips back to Washington. Then came my Parkinson’s diagnosis. I resigned to focus on my health. Again, I believed I had taken my final business trip to DC.

Not so fast.

Parkinson’s Policy Forum on Capitol Hill

Christine and I have been invited to attend the 2026 Parkinson’s Policy Forum. The Forum is a nonpartisan national advocacy event sponsored by leading organizations, including The Michael J. Fox Foundation, The Parkinson’s Foundation, and the American Parkinson's Disease Association. We will attend as representatives of The Parkinson’s Foundation.

The event brings together 250 participants from nearly every state—patients, care partners, clinicians, researchers, and advocates. Over three days, we will receive advocacy training and meet with Members of Congress and their staff to discuss policies shaping research, care, and prevention.

What Does Successful Advocacy Look Like?

Successful advocacy in Washington is rarely dramatic. It isn’t measured by a compelling story told well or by a firm handshake at the end of a meeting. It isn’t even measured by how energized we feel when we walk out of the room.

Successful advocacy is measured by movement inside the system. It looks like a staffer requesting follow-up information or a Member deciding to join a caucus or sign onto a letter. It results in Parkinson’s research being included in the appropriations language before priorities are locked in.

I’ve sat on the other side of that desk before. I know how many worthy causes compete for limited dollars. I know how easily good ideas become “unfunded add-ons.”

If Parkinson’s is discussed as a growing national public health priority affecting more than one million Americans — rather than a niche neurological issue — that is progress.

My Advocacy Goal

I am honored to participate in this year’s Forum. As a person living with Parkinson’s, I have a personal stake in its success. I will tell my story, but my goal is bigger than my own outcome.

It’s often said that if you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s. Every journey is different. Every story carries weight and has the potential to move donors to give, lawmakers to act, and researchers to push closer to a cure.

Most of the one million Americans living with Parkinson’s disease will never sit in a congressional office to share their experience. In some ways, those who are unable to attend are constituents who will be represented by Forum attendees. We must not lose sight of the stories of those unable to attend.

Congress will have the opportunity to hear more than 250 stories during the Forum. Many will be eloquent. Some, not so. All will matter. The ultimate measure of success will be whether decision-makers leave those meetings feeling that the one million Americans who could not attend were nevertheless in the room.

That kind of advocacy is powerful. That’s legacy.

In 2019, I flew out of Washington believing my work there was finished. This time, I’m flying back not to close a chapter, but to help write one.

Warning: "Some may find the vernacular offensive. I apologize up front."

The season three premiere of Apple TV’s comedy-drama series, Shrinking, aired on January 28th. The show centers on Jimmy Laird (played by Jason Segel), a therapist struggling with severe grief and depression a year after his wife's death in a car accident. The show’s backstory centers on Paul (played by Harrison Ford), Jimmy’s boss and fellow therapist, who has Parkinson’s disease.

The season three premiere was highly anticipated because Michael J. Fox joins the cast for at least three episodes opposite Ford, as Gerry, a client also navigating life with Parkinson’s disease. For people with Parkinson’s, the initial scene where Ford and Fox’s characters first meet is deeply familiar.

There are no speeches. Just two men clocking each other, a kind of silent exchange that happens faster than any conversation could accomplish. There’s no need to ask questions or trade diagnoses because the body language does the talking. What looks like a casual interaction to outsiders is, to insiders, an instant exchange of shared reality.

As the scene comes to an end, Gerry (Fox) turns to Paul (Ford) and says, “I’m still here. Fuck Parkinson’s.”

Paul replies, “Yeah.”

Gerry grins. “You have to say it to mean it.”

After a brief pause, Paul looks at Gerry and says, “Fuck Parkinson’s.”

It was a raw, but powerful scene—the vernacular would have certainly been different if John Boy had been diagnosed with Parkinson’s in the 70s TV series, The Waltons. In that brief exchange, millions of people, Parkinson’s patients and caregivers alike, heard their own internal monologue spoken out loud, without euphemism or inspiration-porn varnish.

T-shirt companies are no doubt scrambling to produce Fuck Parkinson’s merchandise. I am in the market for one myself.

Fuck Parkinson’s.

All Aboard!

Towards the end of the exchange between Paul and Gerry, Paul comments, “I feel stupid complaining to you.”

Gerry responds, “Oh, please. We’re all on the same shitty train to Sucksville.”

The rawness of the Fuck Parkinson’s exchange overshadowed Gerry’s comment, but the train reference resonated with me. Trains often show up in life metaphors. Kenny Rogers used a train bound for nowhere, on a warm summer’s evening, as the setting for his song, The Gambler.

Sure, the train bound for nowhere sounds a bit ominous, but an adventurous person might pause and say, “Sure, why not? Let’s see where this thing is going.” Not so for the shitty train to Sucksville. No one boards this train with a suitcase and a sense of adventure—not intentionally, anyway.

Shortly after I retired from the Air Force, an old friend called to invite me to dinner in Alexandria, Virginia. After dinner and a few drinks, we walked over to the Metro train station. Tony was heading north, back to his hotel, and I was heading south. A few minutes later, I said goodbye and stepped on the train. I suddenly realized I was on the wrong train, headed to the wrong destination, and it was the last train of the night. There wasn’t a lot I could do. Train tracks are set, and I couldn’t steer. The next stop was the end of the line for the night. Thanks to my honest mistake, I was forced to adapt.

The shitty train to Sucksville is similar, except there are no destination choices to make. It’s a train that shows up uninvited. One day, you realize you’re already onboard, and you are forced to make room for adjustments you didn’t plan to need. After a quick look around, you discover there are no first-class seats on this train.

There are single seats on one side and bench seats on the other. Some face the front, others face the back. None looks comfortable. The ride isn’t dramatic; it’s relentless. The ride doesn’t roar; it grinds. Every mile asks for something: patience, adaptation, humility. Everyone is going to the same place, yet no two people are likely to experience the ride in the same way.

You can engage other passengers and possibly learn something, or you may be able to provide useful information to another. You can choose to stare out the window. If you are a member of the young-onset cadre and can’t bear to be around the older cadre, you and your friends can move to a different car, but be forewarned, all the train cars are connected and headed to the same place.

There was no ticket booth, and no choice of destinations. It really is a shitty train, and calling it anything polite would be dishonest, because this isn’t a scenic detour or a metaphorical journey.

Where You Don’t Have to Explain

My Parkinson’s diagnosis is now one year in my rear-view mirror. I’ve successfully navigated other health concerns I hadn’t planned for. Early on, I wasn’t sure where I belonged. To continue the train analogy, when I first realized I was on this train, I wasn’t sure how I would fit in or how quickly other passengers would make room for me.

When I attended my first Parkinson’s advocacy event and later attended my first Rock Steady Boxing session, I was nervous, and my self-confidence was at an all-time low. I was hesitant and unsure of myself. In both cases, someone caught my eye. There was a nod, introductions, and a few jokes. Some didn’t say much at all. But they made it clear: you’re welcome here. For a disease that isolates so efficiently, that quiet welcome mattered.

I quickly realized that I had found what Ray Oldenburg calls a third space in his book, The Great Good Place. Third spaces are places beyond home (first space) and work (second space), where everyone has something in common, and everyone knows your name—think Cheers.

For people living with Parkinson’s, third spaces are the places outside of home and work where the disease doesn’t need to be explained. Parkinson’s specific gyms like Rock Steady Boxing, physical and occupational therapy rooms, support groups, and advocacy meetings are places where everyone already knows why your hand shakes. The burden of translating your experience disappears, freeing up energy for something more important: a sense of belonging.

These spaces don’t fix Parkinson’s, but they change the ride. They normalize what feels abnormal. They replace isolation with routine. They surround you with people who, like you, are learning—sometimes clumsily, sometimes brilliantly—how to live well in the same season you’re navigating. Over time, they become more than places you go. They become part of how you stay upright.

I didn’t choose to board this train, but I’ve learned that I can find much inspiration and motivation from the other passengers. As it turns out, that matters. It makes the difference between merely enduring the ride and finding moments of connection, purpose, and even humor along the way.

Shitty train. Uncomfortable seats. Great company.

All aboard!

I got sucked into what I call the Parkinson’s news cycle on social media. The Parkinson’s community was abuzz about Congress and the Department of Health and Human Services’ failure to meet key deadlines mandated by the National Plan to End Parkinson’s Act, signed into law in July 2024.

Squirrel.

Having spent sixteen years in Washington, I feel I have a pretty good working knowledge of how laws typically move from passage to implementation, as well as how the federal budgeting process works. I decided to deviate from my plan and wrote the December 31, 2025, post, Authorized, Unfunded, and Now Unled. With the Parkinson’s news cycle continuing to spin, I again spent a considerable amount of time chasing that squirrel, and here I am at 0645 on January 17th without the one-year anniversary post I wanted to write.

I’m a little frustrated with myself, to say the least.

But on a positive note, my meds did what they were supposed to do last night. I got a decent night’s sleep, and the tremors that sometimes hinder my typing are taking a break. I’m thinking Phil must be sleeping late. Maybe there’s still time to bang out that anniversary post this morning. Since we’re in the middle of a major winter storm here in central Florida—it’s 35 degrees—I don’t have anywhere else to be until it warms up.

A Year In

January 17 isn’t a milestone I celebrate, but it is one I acknowledge. One year ago today, Parkinson’s disease stopped being an abstract possibility and became part of my daily life. It’s hard to believe it has been a year since I read the words “you have Parkinson’s disease” in an email from my neurologist—she’s not my neurologist anymore.

From where I sit now, the past twelve months feel less like a single chapter and more like a series of small negotiations—with my body, with time, and with expectations I didn’t realize I was carrying. A year ago, I didn’t expect Parkinson’s to change my life all at once. My symptoms were unremarkable at the time, and I was confident I could manage them. I just needed to make a few lifestyle changes. No biggie, or so I thought.

After attending a Michael J. Fox Foundation Parkinson’s IQ + You event in Orlando, Christine and I set about putting together a care team. With my primary care doctor's help, we found a great neurologist, who then referred us to the Norman Fixel Institute for Neurological Diseases in Gainesville, Florida, where we met a movement disorder specialist. Again, thanks to my primary, we were referred to a board-certified physical medicine and rehabilitation doctor, who got me started in physical therapy. Everything was on track, I thought.

Planning For the Best With No Consideration For The Worst

Then came the detours I hadn’t planned for, including a heart catheterization and cardiac rehab that interrupted the aggressive exercise routine I had committed to early on. It wasn’t a setback so much as a teaching moment: adaptation isn’t linear, progress isn’t tidy, and sometimes staying in motion means learning when, and how, to slow down without stopping.

Early on, I did what many of us do after a diagnosis. I read. I researched. I made lists. I focused on what I could control—exercise, therapy, routines—believing that discipline would provide some measure of protection against what felt unpredictable. In many ways, it helped.

But the first year taught me something else as well: effort alone isn’t enough. Living with Parkinson’s is not a solo project. It requires trust—in clinicians, in therapists, in caregivers, and sometimes in systems that move slower than the disease itself.

Christine and I went to great lengths to build a care team of experts we trusted. Dad always said, “If you are going to go to the trouble of asking someone for advice, you should at least consider what they tell you.” He also had a few choice words about the many snake-oil salesmen that are always lurking about offering unsolicited advice—the Parkinson’s news cycle is full of them. I’ve found that to be one of the greatest lessons he ever taught me. Thanks, Dad.

A year in, what surprises me most is not what Parkinson’s has taken, but what it has clarified. I’m trying to be more deliberate with my time. More honest about limits. More aware of how much effort it takes to manage a body that doesn’t always cooperate. I’ve gained a deep appreciation for the invisible work so many people with Parkinson’s do just to remain functional, present, and engaged in their own lives. I know I will have to do the same.

That Brings Me to Today

Today marks the first anniversary of my diagnosis and the first day of my second year with Parkinson’s. I graduated from cardiac rehab yesterday, so I get to kick off year two by getting back in the gym on my own terms. On Monday, I’ll be exploring a Parkinson’s-specific exercise program called Rock Steady Boxing.

Yes, the name conjures images of Rocky Balboa dancing around the ring with Apollo Creed—or, in some cases, being chased by Apollo Creed. But the program involves non-contact boxing: punching a heavy bag, footwork, stretching, resistance exercises, and aerobic training. Let me assure you, I’m counting heavily on the non-contact part.

Getting Involved in Advocacy

I’m also starting my second year by getting more involved in the Parkinson’s community. Last month, I was invited to a meet-and-greet event with the Parkinson’s Foundation. The Foundation is a leading nonprofit dedicated to improving the lives of people with Parkinson’s disease through research, education, and care. It funds scientific research aimed at better treatments and, ultimately, a cure; provides trusted, evidence-based resources for people with Parkinson’s and care partners; operates a national Helpline; and works to ensure access to high-quality Parkinson’s care across all stages of the disease.

I recently completed the Foundation’s ambassador training. As a volunteer ambassador, I’ll represent the lived experience of Parkinson’s while advancing the Foundation’s mission. In the short time since my diagnosis, I’ve found there are many people looking for information, and there’s a lot of bad information circulating online. My hope is to help raise awareness, share accurate information, and reduce stigma by speaking with community groups, health professionals, policymakers, and the public.

I recently attended my first Parkinson’s Foundation event in The Villages. Located in central Florida, The Villages is one of the largest retirement communities in the United States and has grown rapidly since its inception. As you might expect, Parkinson’s shows up there in numbers. Approximately 100 people attended the event, and I had the opportunity to meet some wonderful people. It felt like a place where everyone knows your name.

I arrived early and found an empty seat. I was quickly joined by a group of kind, welcoming people. After I introduced myself, an older gentleman—a fellow veteran with more advanced symptoms than mine—shook my hand and said, “You know, Parkinson’s isn’t the worst thing that could happen to you.”

I’ve thought about that sentence ever since.

The announcement arrived at a particularly fragile moment. The National Plan to End Parkinson’s Act (the National Plan) remains in its early stages and unfunded, with advisory councils and implementation mechanisms still taking shape.

The timing did not go unnoticed.

I apologize for the length of this post. There is a lot to unpack.

The news did not land well within the Parkinson’s community, which had recently completed an organized call to action urging members of Congress to address the lack of funding for the National Plan and calling on the National Institutes of Health (NIH) to provide greater transparency around advisory council appointments. Although no official link exists between these events, many observers and stakeholders have sought to connect the dots between the NINDS director's departure and the lack of visible progress on the National Plan.

The decision not to reappoint Dr. Koroshetz was communicated internally within NINDS, without a public explanation from the Department of Health and Human Services (HHS).

What We Do Know

The Director of NINDS serves a fixed five-year term. At the end of that term, the director may be reappointed, but reappointment is not automatic. The decision is made by NIH leadership, with oversight from HHS.

Dr. Koroshetz was appointed director in 2015 and reappointed in 2020 for a second five-year term. In 2025, NIH leadership opted not to renew the appointment for another term. He was not fired in the traditional sense; his appointment expired and was not renewed.

Dr. Koroshetz is a respected neuroscience leader with decades of experience. The decision not to reappoint him is unusual in both its timing and its transparency, and, as of this writing, the specific rationale has not been publicly explained.

What Is the Director of NINDS Responsible For?

NINDS is a federal research institute within NIH. Its mission is to reduce the burden of neurological disease by advancing scientific understanding of the brain and nervous system.

That mission extends far beyond Parkinson’s disease.

In fact, Parkinson’s represents only a small portion of NINDS’ overall portfolio.

But Isn’t Parkinson’s the Fastest-Growing Neurological Disease?

Yes. It is.

But based on aggregated prevalence estimates from NIH and CDC sources, more than one in six Americans is living with a neurological condition that falls within NINDS’ mission space. This is a conservative estimate that includes only major neurological conditions.

Below is a breakdown of conditions explicitly within NINDS’ mission, along with approximate prevalence figures:

• Stroke survivors: ~7–8 million

• Epilepsy: ~3.4 million

• Parkinson’s disease: ~1 million

• Multiple sclerosis: ~1 million

• Traumatic brain injury (long-term disability): ~5.3 million

• Rare neurological disorders (combined): ~25–30 million

• ALS: ~30,000

After accounting for overlap among conditions, the aggregate population comfortably exceeds 55 million Americans.

Parkinson’s disease is the fastest-growing neurological disorder, but the current Parkinson’s population represents roughly 18 percent of Americans affected by neurological disease overall.

That doesn’t make Parkinson’s less important.

It makes the case bigger.

There is strength in numbers and fifty-five million voices advocating together for strong leadership at NINDS should carry weight.

The National Plan to End Parkinson’s

The National Plan directs the Secretary of HHS to develop and maintain a coordinated national strategy to prevent, diagnose, treat, and ultimately cure Parkinson’s disease and related neurodegenerative disorders. The law establishes a federal advisory council, mandates regular updates, and requires annual progress assessments through 2035.

What the law does not do is provide funding.

The National Plan authorizes a framework and sets expectations, but implementation depends entirely on future congressional appropriations to agencies such as NIH and NINDS. Without dedicated funding, there is a wide gap between congressional intent and real-world execution.

Can’t NINDS Just Reallocate Its Budget?

Short answer: no—not in the way people often assume.

Federal agencies have minimal authority to redirect funds to implement new initiatives unless Congress explicitly authorizes that reallocation, which brings me to an analogy.

The Bicycle Without an Allowance

Imagine a kid who asks his parents for permission to buy a new bicycle. After some discussion, they say yes. They even specify what kind of bike it should be—safe, practical, appropriate. There’s a plan. There are expectations. There’s excitement.

What’s missing is the money.

Later, when the kid asks when the bike will arrive, he learns there’s no budget for it. Dad suggests he get a job.

In a normal family, that’s workable. The kid has options. He can mow lawns, save his allowance, sell something he owns, or—if he’s lucky—appeal to generous grandparents. He has agency. He can create a path from permission to reality.

Federal agencies don’t work that way.

NIH and NINDS don’t have allowances. They can’t earn money on the side. They can’t sell assets, and the agency can’t fall back on generous grandparents. They can’t redirect funds Congress appropriated for other legally defined purposes. While agencies may have limited discretionary funds, they are insufficient to support a long-term, multi-year initiative like the National Plan.

Signing the National Plan without funding wasn’t like telling a kid to save up for a bike. It was like telling him he’s allowed to buy one—while forbidding him from earning money, touching an allowance, or selling anything he owns—and then wondering why the bike never shows up.

Permission without resources isn’t progress. It’s expectation without means.

Applause Isn’t Action

Congress is good at passing bipartisan bills. It is less good at agreeing on how to fund them. The result is often an unfunded mandate—celebrated with press releases and backslaps—followed months later by stakeholder and constituent frustration when nothing has changed.

Passing a bill is applause. Funding it is the work that follows.

Until money is allocated and leadership is in place to implement it, a national plan remains an intention. Authorization doesn’t build labs, launch trials, or change outcomes.

Funding does.

VA Funding vs. NINDS Funding

I can already hear the objections: comparing the Department of Veterans Affairs (VA) and NINDS is like comparing apples and oranges. That’s fair—but the comparison still reveals something important.

There are approximately 15.8 million veterans in the United States—roughly one veteran for every sixteen non-veteran adults. Since 1989, the VA has been a cabinet-level department. In 2025, its budget was approximately $368 billion, of which $133 billion was allocated for veteran healthcare, research, and operations—roughly $8,400 per veteran per year.

By contrast, more than 55 million Americans live with neurological conditions that fall under NINDS’ mission. NINDS’ 2025 budget was approximately $2.69 billion—about $49 per patient per year to support all neuroscience research, including Parkinson’s disease.

That disparity should give us pause.

A Debt the Nation Has Not Yet Paid

From where I sit, the contrast between how we fund Parkinson’s research and how we fund veterans’ care exposes an uncomfortable truth about national responsibility.

For veterans, the United States eventually acknowledged a debt. As Abraham Lincoln said, the nation would “care for him who shall have borne the battle.” That promise was later institutionalized through the VA, reflecting a recognition that when the government asks people to accept extraordinary risk in service of the country, it assumes a lasting obligation to address the consequences.

The VA is providing support and health care benefits for veterans with Parkinson’s disease who were exposed to chemicals such as Agent Orange, contaminated water supplies at Camp Lejeune, or exposed to burn pits in Southwest Asia. For other citizens, Parkinson’s disease presents a parallel obligation—one Congress has been slower to confront.

A growing body of scientific evidence links Parkinson’s to environmental exposures, including pesticides, solvents, and industrial chemicals that were permitted, poorly regulated, or left in widespread use in the United States long after other countries restricted or banned them. For many people now living with Parkinson’s—especially agricultural workers, those working in industrial settings, and anyone living near contaminated sites—exposure was not a lifestyle choice. It was the cost of where they worked, where they lived, or regulatory decisions made on their behalf.

That distinction matters.

When a government allows known or suspected neurotoxins to persist in the environment, it should assume responsibility for the downstream consequences. That responsibility does not end when the science becomes complex or the solutions expensive. It matures when the damage becomes visible.

As for funding, progress in Parkinson’s research has depended disproportionately on patient and family contributions. Organizations like the Michael J. Fox Foundation and the Parkinson’s Foundation have raised billions of dollars—often by asking people living with a progressive neurological disease to fund the science that may one day slow, stop, or prevent it—through personal donations or participation in fundraising activities. Their success is extraordinary. But their necessity should give Congress pause.

Patients should not have to crowdfund accountability.

Passing the National Plan acknowledged that the problem is national in scope. But authorizing a plan without funding shifts responsibility back onto the very people the plan is meant to serve. And allowing the loss of experienced leadership at the moment execution is required sends the wrong signal about urgency.

From where I sit, Congress has not finished the job. Just as the nation eventually accepted that caring for veterans was not charity but obligation, it must now accept that addressing Parkinson’s—especially where government-tolerated exposures played a role—is not optional, symbolic, or aspirational. It is owed. And, the NINDS needs a strong director to oversee the implementation of the National Plan.

Authorized. Unfunded. And now unled—this is not how a nation keeps its promises.

I’m an early riser. I enjoy getting up before dawn. It’s always the best time to read, and it’s when I usually write my Substack posts. When I started the blog, my loose goal was to post twice a month — if I had something worth saying. If you’ve been following along, it’s clear I’ve been reading more than writing.

I had just finished a book, so on the morning of December 17th, I began deciding what to read next. I tend to buy books faster than I can read them, so I always have plenty to choose from. I had narrowed my choice to two books when I realized that the 17th marked eleven months since my Parkinson’s diagnosis. It felt appropriate to return both books to the unread queue and grab the laptop instead.

I didn’t get very far with writing that morning. We’ll call it writer’s block.

Over the last few months, there haven’t been any fireworks. No dramatic breakthroughs of any kind, and fortunately, there have been no hoot owls calling at my window, and I haven’t spotted a gray wolf pacing the tree line. Not a single omen warned me of imminent danger. Just the quiet realization that I’m almost a year into this new reality.

Getting things right with the heart

Over the past few weeks, my focus has been on cardiac rehab. My trip to the cath lab back in August cleared that pesky little blockage—maybe 70% isn’t so little—in the widow-maker. As effective as stents are at opening blockages, the procedure introduces a foreign object into the heart, altering blood flow and capacity. Thanks to advances in medicine and science, many heart cath procedures are now done on an outpatient basis, but the heart still has to recover and adjust to its new traffic pattern.

To support that recovery, my cardiologist referred me to cardiac rehab. I attended rehab sessions where I exercised while connected to an EKG monitor, the team keeping a close eye on my heart as I put it through its paces.

I saw my cardiologist this week, and she was pleased with my progress. I met my rehab goals and was cleared to return to the gym and pursue more rigorous exercise. I suspect there’s a New Year’s resolution in there somewhere.

Seeing my future

Christine and I traveled to Smithfield, Virginia, for a few days to visit my son, James Patrick, Michaela, and their ten-month-old son, James Taylor. According to Waze, it’s a 10.5-hour drive, but it ends up closer to twelve once you factor in fuel stops, meals, and quick walks for our Goldendoodle, Bennie.

We decided to split the drive over two days, stopping halfway on the way up and planning to do the same on the way back.

After a few days of spoiling the newest member of the family, we left just after lunch on the 22nd, hoping to make it to Santee, South Carolina, for the night. A short in our trailer’s lights changed those plans, and we stopped instead in Florence, North Carolina. Towing a black utility trailer with no working lights, at night, in bumper-to-bumper traffic on I-95, the night before Christmas Eve, felt like a bad idea.

I hoped to get back on the road early Christmas Eve morning. I got up just after six to walk Bennie, then decided to head down to the hotel dining room for coffee and a quick continental breakfast while Christine enjoyed a little extra sleep.

As I was eating, an elderly couple came in and chose a table a few seats down from me. I guessed they were in their late seventies. The woman walked with a slow, shuffling gait typical of someone with Parkinson’s or another movement disorder. She used a festive cane decorated in Christmas colors and wore a Santa hat.

She left her purse at the table and headed to the buffet to fix her plate. Her husband paused, pulled a medication organizer from his pocket, set it on the table, and then went to prepare his own breakfast.

Despite moving slowly and having a visible tremor in her left hand, she navigated the buffet with confident determination. The husband kept a quiet watch, ready to help if needed. When she struggled to manage a bowl of grits, she turned toward him and smiled. He recognized the look immediately, filled the bowl, and carried it back to their table. He also prepared two cups of coffee before sitting down.

She carried her plate using her steadier hand, cane in the other, and made her way to the table on her own. Her husband stayed close but didn’t interfere. After sitting, she reached for the pill organizer and struggled to open one of the compartments. He waited patiently until she handed it to him. Once opened, she took her medication and began eating.

Because of the tremor, she ate with her right hand while her left rested in her lap. The smile never left her face.

I returned to my room before they finished breakfast. I never spoke to them, and I can’t be sure they were traveling alone. I imagined them on the road, heading toward Christmas with grandchildren. They weren’t letting a movement disorder keep them from enjoying the holidays or being with family.

Believing in life after diagnosis

When you first hear the words “You have Parkinson’s disease,” the diagnosis draws a line. It’s hard not to see it as an ending. Over the past eleven months, I’ve learned that whether it becomes an ending or a beginning is, in many ways, up to me.

Before Parkinson’s — and before my unsolicited introduction to an unwanted alter ego named Phil, my shorthand for the disease — momentum meant going full speed until the wheels came off. After diagnosis, momentum takes on a different meaning. The hardest part isn’t the symptoms themselves; it’s wondering who you’ll become in response to them.

I accepted my diagnosis quickly. Understanding took longer.

Understanding arrives in moments like standing in the kitchen, trying to make a sandwich when the tremor isn’t responding to medication, and thinking, Okay… this is who I am now. And I can work with this. It’s learning how to move forward — not just physically, but mentally, emotionally, and spiritually — all the ways that make a person feel like themselves.

I’ve come to understand that whether I believe in life after diagnosis or don’t believe in it, I’m right.

Life after diagnosis begins with believing it exists.

It’s never losing sight of the fact that I am still me. I was supposed to be entering the retirement season of my life. Nothing has changed — except the addition of a Parkinson’s twist. Thinking back to the couple at breakfast yesterday, I believe they had figured this out long ago.

It comes down to a simple idea:

Life after diagnosis begins with believing it exists.

Merry Christmas!

Thanksgiving hits differently this year.

Sure, we’ll still do all the traditional things — cook the classics, eat like we’re preparing for winter hibernation, and pretend we’re going to take just a “short nap” afterward. But Thanksgiving weekend always comes with an extra layer of entertainment: the annual family football diplomacy operation.

Saturday’s Iron Bowl will take its usual place at the center of the living room. I will settle in, fully committed to Alabama, ready to coach from the recliner if necessary. My daughter Jessica — an Auburn graduate with absolutely no intention of suffering quietly — will counter with equal enthusiasm and just enough good-natured trash talk to make the dog leave the room.

And the rest of us will nervously pass the remote like it’s a live grenade, trying to keep the peace.

We’ll also humor my son-in-law, Darrin, by switching the channel over to the Ohio State game every so often. Not for long — just enough for him to believe we care deeply about Big Ten football while we mentally calculate how quickly we can flip back to the real game.

None of this fixes Parkinson’s.
None of it makes the symptoms vanish.
But all of it reminds me that life goes on — messy, loud, funny, familiar.
And that reminder alone feels like a gift.

Since my diagnosis, I’ve learned something I never expected to understand:
I’m not grateful for Parkinson’s — I’m grateful within it. That’s a different thing.

I’m not grateful for tremors, stiffness, slowness, or the constant need to adjust. But I am grateful in the middle of all of it — grateful for what remains, what matters, and who still shows up.

I’m grateful for Christine, who steadies me in ways medication can’t.
I’m grateful for family and friends who bring patience instead of pity.
I’m grateful for the people I’ve met on this journey who speak honestly, live bravely, and remind me that I’m not walking this season alone.
And I’m grateful for purpose — new purpose — even as life shifts under my feet.

This season isn’t easy. But gratitude gives it shape, meaning, and direction.
It doesn’t erase the hard parts… it just helps me see beyond them.

From where I sit today, the view has changed, but the meaning hasn’t.

Happy Thanksgiving.

I really needed that laugh.

There were certainly seven things on my mind, at least. Each requiring time—time that I don’t have. The irony is that I used to be great at finding the time. Regular exercise wasn't optional in the military. It was expected. Usually, we weren’t afforded time during the duty day to do it. That meant carving it out of my personal time. Between duty time, family responsibilities, and kids’ afternoon activities, the only open slot seemed to be 0400 to 0600—that’s 4 to 6 a.m. for you non-military types. The only competitor for that time was sleep. Who needs sleep? I made it work. It became a lifestyle, a habit that carried me for years after I retired from the Air Force.

After my diagnosis, I gave up my consulting job so I could have plenty of time to concentrate on my health. It’s easier said than done. It turns out that free time is a sneaky illusion. Tasks expand to fill whatever space you give them, and if I’m not careful, I’ll find myself short on hours for the one thing Parkinson’s insists on: exercise.

Exercise and Medication—A Necessary Combination

I follow several Parkinson’s forums, and this comes up again and again. Many newly diagnosed patients are shocked—even angry—when they’re told that medication alone won’t cut it. Many have never exercised regularly, never carved out time for it, and now the doctors are saying that movement is the medicine. They feel blindsided and frustrated.

I’ve learned a lot about Parkinson’s in the short time since my diagnosis, but two things stand out: Medicine treats the symptoms, and movement treats the future progression of the disease. The exercise techniques I learned in physical and occupational therapy were slowly teaching my body to move and training my brain to adapt. When I had to stop for other health reasons, the illusion of control faded fast. Parkinson’s didn’t wait.

The frustrating part is how fast the benefits of exercise faded when I stopped. My progress had been slow, steady, almost invisible, and I didn’t realize how much the exercise was contributing to managing my symptoms. After the pause, the setbacks became apparent with a loud and clear announcement. Stiffness crept back in. Movements that had felt fluid started to falter. Even the medication seemed less effective, as if it were working without a partner. Fatigue, tightness, and that heavy, sluggish feeling returned much faster than I believed possible. It’s a harsh reminder that Parkinson’s doesn’t take breaks. The only way to keep pace is to continue moving.

Regaining What I Lost

Returning to exercise after time off felt like starting over. I was much slower, stiffer, and less sure-footed than I remembered. Since Parkinson’s didn’t give me makeup days, I was going to have to rebuild one step, one stretch, one rep at a time.

When the cardiologist gave me the green light to start light exercise, I started walking. We live a short golf cart ride from Blue Springs State Park, where a beautiful walking path leads to the springs. It’s a mile, round trip. The first morning, I went by myself, and I was excited to start moving again. When I reached the springs, I stopped to rest. I suddenly realized that I had not noticed the beautiful surroundings on the first leg of the walk. It took all of my concentration to maintain a proper walking gait.

One thing I didn’t expect was how much losing my arm swing would change everything. When Parkinson’s stiffened my right side, my arm just stopped moving naturally when I walked. It threw off my balance and rhythm, not to mention my confidence. The body’s meant to move as a system, and when one piece stops cooperating, every step feels off-center. Therapy had helped me relearn that motion and consciously drive what used to be automatic. The progress I had made was all but gone.

The early sessions back on the treadmill have been frustrating—short bursts of progress followed by waves of fatigue. Slowly, I’ve started to recognize familiar signs: a steadier turn, less stiffness in the morning, and a little more fluidity in my movement. However, progress is slower than I’d hoped, most likely because the cardiac rehab exercise pace is not as intense as my previous exercise routine.

Recent clinical trials show that intense aerobic exercise, done regularly, may actually slow the progression of Parkinson’s—not just ease symptoms. In one study, patients who exercised at 80–85% of their maximum heart rate showed a less pronounced decline in motor function compared to those who didn’t. I’m not at that level yet.

I will get there.

Prioritizing Exercise

I’m lucky in one sense—I had the luxury of being able to retire to make time for my health. Many people with Parkinson’s don’t have that option. But as it turns out, retirement only gives me more time if I protect it. The old joke about retirees wondering how they had time to work isn’t a joke. Most days, my schedule isn’t filled with back-to-back meetings, as it was when I was working. There is plenty of time between appointments, home projects, errands, and good intentions.

Time itself isn’t the problem; priorities are. The morning cup of coffee and a few minutes of reading or writing that I prioritized before work each day can stretch into a couple of hours and creep into what should be exercise time. No one is taking attendance, and Parkinson’s doesn’t care that I’m retired. Then there’s Phil, my Parkinson’s alter ego. He’s the guy sitting at the end of the bar, drinking a beer called Later, whispering that I’ve earned a break. He certainly doesn’t care and can’t be trusted. The only way I can keep Parkinson’s from ruling the day is to ensure exercise goes on the calendar first.

There’s a line in Bob Seger’s Roll Me Away that always stuck with me: “Stood alone on a mountain top, starin’ out at the Great Divide. I could go east, I could go west—it was all up to me to decide.” That’s what Parkinson’s feels like some mornings. I reach that fork in the road where I can stop at Phil’s Bar and try again tomorrow… or keep going, because tomorrow’s road won’t be any shorter.

These days, thanks to scheduled rehab classes, I don’t miss any planned exercise. The nurses are taking attendance. When rehab is over, it will be up to me to prioritize exercise. I can’t outrun Parkinson’s, but I can manage it.

I have to.

The gray “GRAY MATTERS” shirt in the photos isn’t just for style. On the first of every month, people in the Parkinson’s community wear gray and post with #GrayMatters to raise awareness for brain health and Parkinson’s research. It’s a grassroots effort — small, simple, and growing. November 1st will mark its third month.

Since my last post, my focus has been on heart health after angioplasty. My cardiologist cleared me for light exercise until I could begin cardiac rehab, so Christine and I have been walking each morning. We’re now up to three miles.

This week, I began formal cardiac rehab classes. Each session, I wear a heart monitor so the therapist can track my rate and rhythm. The first class went smoothly — it all seemed like a lot of fuss about nothing. I feel great. I’d love to jump back into spin, but for now I’ll play by the rules.

Care Team Update — Enter the Fixel Institute

While on sabbatical from my Parkinson’s exercise regimen, I made progress in other areas of my Parkinson’s journey.

Since the diagnosis, the first order of business has been assembling the right care team. There’s no 1-800-CareTeam hotline, no single number for the perfect lineup of doctors and therapists. Each case is unique, and every team must be built from scratch.

After an initial fumble — I was notified of my Parkinson’s diagnosis via email — my general practitioner (GP) pointed me toward a neurologist and therapy team, who in turn referred me to a Movement Disorder Specialist (MDS). That path led me to the Fixel Institute and Dr. Matthew Remz. It took six months to get in — a reminder of just how few MDSs there are. More on that later.

The Exam

Every Parkinson’s appointment carries both anticipation and anxiety. I arrived at the Fixel Institute with a stack of MRIs, CT scans, and my DaTscan, expecting another routine visit where the doctor would spend ten minutes flipping through my file before conducting a quick exam.

Wrong.

Instead, Dr. Remz himself came to the waiting room to bring Christine and me back. Introductions were already done by the time we sat down, and he launched straight into my case. He had reviewed everything beforehand. He provided us with a thorough review of all the data.

The exam was thorough, covering vitals, reflexes, coordination, and gait. He noted brisk reflexes, a mild right-sided tremor, reduced facial expression, and the subtle slowness of finger taps and alternating movements, which would only be caught by a trained eye.

My Unified Parkinson’s Disease Rating Scale (UPDRS) score was 26. On the Hoehn and Yahr scale, I’m at stage 2 — symptoms on both sides, but balance intact.

Sidebar: What Does a UPDRS Score Mean?

I had never heard of the UPDRS before this appointment. It is one of the main tools doctors use to measure Parkinson’s symptoms. It has several parts, but the section most often discussed is the motor exam — the one where the neurologist assesses tremors, stiffness, movement speed, speech, and gait. Scoring for the motor exam runs from 0 to 108:

• Lower = milder symptoms

• Higher = more severe symptoms

My score: 26. Enough to be clearly measurable, but still on the milder side. Its principal value is as a baseline. At future visits, Dr. Remz will evaluate my progress as compared to the baseline to determine how exercise, therapy, and medication are affecting my trajectory.

Back to the Exam

Layered on top of the exam was my history: right-sided speech changes since 2018, increasing stiffness, a positive DaTscan, loss of smell, occasional constipation, and disrupted sleep consistent with REM behavior disorder.

A single test can’t confirm Parkinson’s. Diagnosis relies on a clinical examination, supplemented by supporting tools, such as DaTscan results or a trial of Carbidopa/Levodopa. If symptoms improve while using this medication, it strongly supports a diagnosis of Parkinson’s.

All of this painted a picture that was, in Dr. Remz’s words, “clinically probable idiopathic Parkinson’s disease.” In other words: not secondary, not atypical, just classic Parkinson’s. The only missing piece is a Carbidopa/Levodopa trial.

Next Steps

The plan: start Carbidopa/Levodopa three times daily, while keeping my current regimen of Ropinirole steady for now. The trial helps gauge both benefit and tolerance. Side effects can include nausea, dizziness, or hallucinations — but so far, a week in, I’ve had none.

Dr. Remz also asked my GP to check my ferritin levels, as low iron can contribute to restless leg syndrome. He noted that I’ve already been through PT, OT, and speech therapy, and encouraged me to continue as my cardiologist allows.

Reflection

Leaving the Fixel Institute, I felt both the weight of the diagnosis and the relief of a plan. With a UPDRS score of 26, I remain independent—but daily tasks now require more effort. It’s sobering to think about the score climbing, but it also fuels my motivation to stay active and engaged.

If Parkinson’s is a 100-mile road, I’m maybe a quarter of the way along. There’s a lot of road — and choices — still ahead.

What struck me most was the time spent with the doctor. In his final progress note entry, Dr. Remz wrote, “I spent 71 minutes in direct care of this patient, including chart review, note writing, and face-to-face with the patient, examining and discussing the patient’s care on the day of service.” Consider that. I got 71 minutes of focused attention. That alone is remarkable in today’s healthcare world.

Parkinson’s isn’t solved in 71 minutes, but within that span, I gained a clearer picture of where I stand, where I’m headed, and what I can do to help myself. His parting reminder: “Nothing is more important than consistent exercise.”

For all the complexity of neurology, the most potent tool remains in my own hands — keep moving.

A Note of Thankfulness

There are plenty of people — Michael J. Fox among them — who say the diagnosis gave them a new purpose and they wouldn’t trade it away. I admire that, but I’m not there yet. Parkinson’s arrived just as I reached retirement age, and changed the entire trajectory I’d been planning. I’ve already had to give up things I loved, and the reality is the disease will get worse. I’m not bitter, and I want to be a contributing member of the Parkinson’s community. Just being honest.

But, as difficult as it is to hear the words “clinically probable idiopathic Parkinson’s disease,” I’m grateful it wasn’t one of Parkinson’s nastier cousins. Conditions like Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), or Corticobasal Syndrome (CBS) are usually far more aggressive, progress more quickly, and are harder to treat. Having classic Parkinson’s isn’t uncomplicated, but it gives me better treatment options, a slower course, and a larger community to walk alongside.

Access to Specialized Care — The Reality

According to the Parkinson’s Foundation, only about 660 MDSs are practicing in the United States. According to survey data, an average MDS sees about 780 patients per year. At that rate, only 514,800 Parkinson’s patients can be seen each year. With over one million Parkinson’s patients, and about 90,000 being added per year, there is a significant deficit in specialized care.

That gap means most people rely on general neurologists or even primary care providers, delaying specialized treatment and therapies that require expert oversight.

I count myself fortunate to have landed at the Fixel Institute.

In the post, I share:

• My January 2025 diagnosis with late-onset Parkinson’s.

• Why I first wanted to keep it secret—and what changed my mind.

• How the Michael J. Fox Foundation’s Parkinson’s IQ + You event opened my eyes to the power of community.

• Why I launched From Where I Sit as a way to tell my story.

• A reminder about the importance of exercise, balanced with getting a full physical exam first.

I also recommend The Parkinson’s Plan by Dr. Ray Dorsey and Dr. Michael Okun, an excellent guide to preventing, slowing, and treating Parkinson’s.

You can read the full feature here:
👉 Parkinson’s Spotlight: Chris Anthony

Thanks, as always, for being part of this journey with me, and thanks to Chris Denny at Our World in Words and Film for spotlighting my Parkinson’s journey.

It’s been three weeks since I underwent an unexpected heart catheterization to remove a 70% blockage in the area of the left anterior descending (LAD) artery, better known as the widow maker. The unexpected detour through the Cath Lab really confused my internal Waze app.

I started the year off with a Parkinson’s diagnosis—enough to challenge even the most skilled of navigators. After a brief period of denial, I quickly realized I had to make a few lifestyle changes so that I could focus on managing Parkinson’s and the symptoms that were sure to come. I traded my trusty baseball glove for a knuckleball catcher’s mitt—with Phil toeing the rubber, I would need all the help I could get. It never occurred to me that my heart had other ideas.

Post-Procedure Follow-Up

Over the last couple of weeks, I’ve had follow-up appointments with my general practitioner, cardiologist, and my VA doctor. My GP reviewed my recently expanded list of medications to ensure they all play well together. Since the procedure, my average blood pressure has dropped significantly, so we spent extra time reviewing the meds I’ve been on for more than 35 years.

The next day, I met with my cardiologist, who hadn’t performed the procedure since it started in the ER. After a thorough exam, including an EKG, we reviewed the records. Other than that one blockage, she said I have a “strong heart.” The various scans and tests didn’t show any other areas of concern in the coronary arteries. She wasn’t worried about the lower blood pressure average, but we reduced my dosage anyway. That’s a good thing.

Next week, I’ll follow up with the doctor who performed the procedure. Hopefully, I’ll get the green light to ease back into my exercise routine. Fingers crossed.

From my standpoint, the procedure itself wasn’t terrible. I was fortunate I didn’t suffer a heart attack, so my heart came through without damage. I know people who have left the Cath Lab with multiple stents or more serious bypass surgery. Others ended up with an Implantable Cardioverter-Defibrillator (ICD) implanted under the skin, below the collarbone, to continuously monitor heart rhythm and deliver a shock if it detects life-threatening arrhythmias.

Life on “Light Duty”

Since discharge, I’ve done a lot of nothing. The doctor gave me a hall pass to avoid everyday strenuous chores and activities—we called it “light duty” in the Air Force. No lifting anything heavier than five pounds for a couple of weeks, and no gym for 30 days. If you’ve ever had a five-pound lifting restriction, you know: everything weighs more than five pounds.

Last week I was feeling good and decided to fire up the smoker. The bag of pellets? Twenty pounds. The pork butt? Eight pounds. The shop fan I wanted on the patio? Well over five. But the spritz bottle—just about a pound. So at least I could spritz the pork butt with an apple juice–water mix every half hour without Christine’s help. I didn’t feel totally useless.

Impact on Parkinson’s

What I didn’t expect was how quickly Parkinson’s reminded me it doesn’t take a vacation. The doctor’s orders for “light duty” sounded reasonable—no heavy lifting, no exertion, let your body heal. But Parkinson’s doesn’t really do “light duty.” Within just a few days of missing my regular therapy and exercise, I began to notice changes. My stiffness increased. My movements slowed. Tasks that had been manageable a week earlier suddenly felt harder.

It drove home something I had taken for granted: exercise wasn’t just a recommendation—it was medicine. The pills I take may help balance the chemistry in my brain, but the exercise keeps my body moving in ways the medication alone can’t. And without it, Parkinson’s wasted no time reminding me who’s really in charge.

Two Conditions, One Body to Manage

Having a heart stent and Parkinson’s at the same time feels like managing two demanding bosses who don’t talk to each other. The heart says, “Take it easy, don’t push too hard.” Parkinson’s says, “Keep moving, or I’ll make things harder.” Finding a balance between the two isn’t simple, and some days it feels impossible.

But if there’s a lesson in all this, it’s that health isn’t managed in silos. I can’t treat my heart in isolation from my Parkinson’s, and I can’t manage Parkinson’s without considering my heart. It’s one body, one life, and both conditions have to be factored into every choice.

Three weeks out, I’m grateful the stent fixed the blockage, and I’m hopeful I’ll soon be cleared to return fully to my Parkinson’s routine. In the meantime, I’m learning—again—that adapting is part of the job description.

Looking Ahead: Exercise and Parkinson’s

Before my emergency room adventures, I had a list of topics I wanted to explore and write about. Near the top was a placeholder for my exercise routine and the relief it provides. Considering my circumstances, that one will have to wait until I’m back in the gym myself.

In the meantime, for those interested in the subject, Phil Bernstein, the proprietor over at the Shakin’ Street blog on WordPress, recently penned an article on the benefits of exercise—cycling in particular—for Parkinson’s patients. He did his homework and cites several reputable sources.

Before You Go

As I keep writing about my Parkinson’s journey, I’m learning just how much this disease asks of us—not just physically, but emotionally, mentally, and spiritually. That’s why I’m joining my friend Tim Lockard (@mypdparty) in his new movement, Gray Matters. On the first of every month, people living with Parkinson’s and those who support us will wear gray and share something—a story, a photo, a post, even a conversation—to remind the world that there is still no cure for Parkinson’s. It’s a simple gesture, but small ripples add up. I’ll be doing my part, and I hope you’ll join me. If you post, use the hashtags #mypdparty #graymatters #pr4pd #cureparkinson's #unstoppable. Because this fight needs all of us, and together we can’t be ignored.

If you are interested in the Gray Matters movement, follow Tim at @mypdparty on Instagram for more information.

A Follow-Up, From Where I Sit

In my last post, Parkinson’s – Finding Someone to Blame, I explored society’s instinct to assign blame for life-changing events such as natural disasters. I drew parallels to how we also seek blame for medical conditions like Parkinson’s. The premise was that it’s easier and more comforting to hold someone else accountable. I also made the case that while there may be factors beyond our control, we may have made choices — knowingly or unknowingly — that increased our risk.

I almost didn’t post it. I suspected my suggestion that each of us might bear some level of responsibility for natural disasters, exposure to toxic environments, or acquiring certain diseases might raise some eyebrows. But I haven’t noticed any unfollows or received any “how dare you” comments. There were a couple of positive responses, and my beautiful bride and chief editor thought it was spot on. Frank and Teddy, two of my closest friends, also agreed with my blameless society theory. The rest of the 350+ readers, so far, have been silent. Hopefully, it was at least thought-provoking.

Little did I know I’d be putting that theory to the test almost immediately.

The Week That Went Sideways

Fast forward to just after 5:00 AM on Friday, August 9th. I’m writing from a hospital bed in Orlando, Florida, recovering from a heart catheterization to remove a blockage. A week ago, I started noticing shortness of breath while exercising. To a lesser degree, I was also beginning to notice it with any exertion.

On Friday, August 1st, I went to my spin class, expecting the usual good workout. Instead, I quickly got winded and my heart rate spiked much higher than normal, so I left and went home. By Sunday, it was worse still, so Christine drove me to the ER. Fortunately, tests indicated I was not having a heart attack, and I was discharged with instructions to see a cardiologist as soon as possible.

We tried to book a follow-up, but the earliest appointment was over a week away. That’s when we decided to head back to the ER on Tuesday evening. That’s when the fun began. After a barrage of tests, including an echocardiogram and nuclear stress test, the diagnosis was a reversible perfusion defect in the mid to distal anterolateral wall of the heart. Translation: part of my heart wasn’t getting enough blood flow during stress but was fine at rest — a classic sign of ischemia.

The next step was a heart catheterization, initially scheduled for Thursday but canceled and moved to Friday. When they finally got in there, they found a 70% blockage in the area of the left anterior descending (LAD), which they were able to reduce to 0% with a drug-eluting stent. The procedure was a success, and now I’m waiting to hear if I’ll be going home today or staying until Sunday.

It all happened quickly, but the reality hit me slowly: I’d gone from planning my Parkinson’s workouts to making sure my heart could handle them at all.

Exercise, Gunshots, and French Fries

Which brings me to a confession. I’ve never exactly been the poster child for clean living. Sure, I was a military guy, ran for years, switched to a bicycle when my knees started to complain, and eventually graduated to the elliptical at the gym. I felt pretty good about that. But I also ate what I wanted, and if it looked good, smelled good, or came with a side of fries, it was on my plate, cholesterol be damned.

My doctors wagged their fingers, warned me about my numbers, and tried to hand me anti-cholesterol meds. But I wasn’t taking any stinking pills. Nope. I made a solemn promise to change my lifestyle… and then promptly broke it at the next all-you-can-eat buffet.

Looking back, it’s no mystery why I ended up here. These heart issues? Let’s just say they’re a self-inflicted gunshot wound and I’m the guy who loaded the burger, pulled the fry, and fired the milkshake.

Proof of Concept

So what does this have to do with Parkinson’s? These posts are supposed to be about Parkinson’s, after all.

As I mentioned in my previous post, a poor lifestyle and poor choices can lead to health issues in the long term. Not in the sense of fault, but in the way risk accumulates through both external exposure and internal wear and tear. There’s no proof that a lifetime with Burger King and Ronald McDonald can lead to Parkinson’s, but it might compromise your ability to deal with it when it arrives.

For those diagnosed with Parkinson’s, the first thing we’re encouraged to do is exercise. We find a movement disorder specialist, attend physical therapy, and commit to an aggressive, regular program. We have to keep moving.

For people who already exercised and lived healthy lifestyles before Parkinson’s, the transition is almost second nature. Even I had no issue committing to a plan. I knew how to do that. I wasn’t counting on my heart not being up to the task. Now, Parkinson’s has to wait its turn while I recover from the heart’s little intervention.

The priority is rebuilding cardiovascular health so I can resume my Parkinson’s regimen. Until then, I’m restricted from exertion until my heart recovers from the procedures, and meanwhile, the gains I worked so hard for are already slipping away. It’s a frustrating pause — but one I brought on myself.

Yes, we live in a blameless society, but in this case, there’s no one to blame but me. Not to worry, I’ll be back in the spin-cycle saddle soon.

In Search of They

After every major natural disaster, like the recent floods in Texas and the Carolinas, or the devastation left in Katrina’s wake, the earliest press conferences follow a predictable script. Even before the water has fully receded or rescue efforts are complete, the questions begin: Who is to blame? Who should have known? What could have been done to stop this?

The human instinct to search for blame kicks in before the full extent of the damage is even understood. We want someone to point to — a government agency, a politician, a flawed system — anything that might help us make sense of suffering dealt by forces beyond our control.

That same instinct kicks in when we, or someone we love, is diagnosed with Parkinson’s, or any serious medical condition. We want to know why. We want to know who or what is responsible. I call it searching for they. They didn’t do their job. They failed to respond. They didn’t get the forecast right. You know the drill.

Blameless Society

I participate in several Parkinson’s disease social media groups and online forums, most of which are restricted to patients and their caregivers. These forums are valuable resources, offering a place where patients and caregivers can ask questions, share experiences, and post information that might help others in the community.

Within these groups, a common topic of conversation revolves around Parkinson’s causes and who is responsible for them. Blame often falls on a familiar cast: doctors who missed early signs, pharmaceutical companies that profit from treatments but offer no cure, chemical manufacturers whose products are linked to increased risk, and government agencies or the military for failing to protect people from known hazards. Some point to slow-moving bureaucracies, underfunded research, or questionable priorities in public health policy.

And it’s not just civilians. Veterans know this story all too well. From the contaminated water at Camp Lejeune, to widespread use of Agent Orange in Vietnam, to burn pit exposure in Iraq, Afghanistan, and earlier conflicts — these weren’t imagined risks. They were real, and often acknowledged far too late.

I receive VA benefits myself for burn pit exposure during the Desert Storm era. And I’m not alone. The PACT Act now offers expanded benefits for veterans with service-related toxic exposures — a long-overdue recognition that some of the damage we carry came not from personal choices but from doing our jobs in environments we didn’t control.

Still, even that recognition has its limits. Some say it doesn’t go far enough, or moves too slowly. And most civilians — factory workers, farmers, utility crews, or anyone simply living near contaminated sites — receive no compensation at all. They’re left with the same disease, the same questions, and far fewer answers. That disparity matters. And it deserves the same urgency and accountability we’re just beginning to offer veterans.

Rarely, though, do we turn the lens inward. In the aftermath of the storms I opened with, there have been few, if any, saying they should have paid more attention to the weather forecast, or should have thought about what they would do if the campground, down by a river, flooded. Similarly, few of us with Parkinson’s admit to using pesticides without gloves and/or ignoring safety instructions, or buying homes adjacent to farms where chemicals have been sprayed for generations.

It’s easier, and more comforting, to hold someone else accountable. Turn on the TV and you’ll see ads for lawsuits against manufacturers of chemicals like Roundup and Paraquat. And sometimes, that blame is well deserved. But if we stop there, we risk missing the full picture. The uncomfortable truth is that while many of these institutions failed us — or exposed us — we may have made choices, unknowingly, that compounded the risk. None of that excuses corporate negligence or systemic blind spots. But it does make the case for deeper understanding — and shared responsibility.

The Things We Do to Ourselves

Sometimes the truth is harder to face because it’s not only them. It’s us, too. Not in the sense of fault, but in the way risk accumulates — through both external exposure and internal wear and tear. We tend to think of Parkinson’s as something that just happened to us. But the reality is more complex.

Research shows that long-term alcohol use doesn’t just harm the liver and pancreas. It also suppresses immune function and increases inflammation, weakening the body’s ability to defend itself. It acts as a neurotoxin that disrupts brain function and may leave the nervous system more vulnerable to damage. The National Institute on Alcohol Abuse and Alcoholism outlines how chronic drinking impacts nearly every major body system, including those critical to filtering toxins and protecting brain health.

But it doesn’t stop there. Smoking, poor diet, lack of regular exercise, and chronic stress can all take a toll over time. Add in poor sleep, unchecked blood pressure, or ignoring early symptoms because “we were too busy” or “didn’t want to know,” and you begin to see a pattern. These aren’t character flaws. They’re just human tendencies. But they matter. Every little thing we do to our bodies, every shortcut we take, can add up. And sometimes, the result is that when something bad does come along, we’re less equipped to fight it off.

It’s like the start of a dark twist on an old joke: two guys are exposed to the same toxic chemicals — one develops Parkinson’s, the other doesn’t. Why? Maybe one experienced more exposure than the other. Maybe one had a genetic vulnerability, the other didn’t. Or maybe one lived in a way that better supported the body’s ability to fight off damage. It’s hard to tell. But that uncertainty is precisely why we need to examine all the factors — industrial, genetic, behavioral — not to assign blame, but to uncover answers.

I’m not suggesting that we each caused our Parkinson’s. I am suggesting that understanding why it happens in some and not others requires looking at everything — what’s in our environment, what’s in our genes, and yes, what’s in our habits.

No Secrets in the Exam Room

If we’re going to be honest about the choices we’ve made in the past, we also have to be honest with the people trying to help us now. That means giving our doctors a full picture — not just our symptoms, but our history. Past habits matter. Alcohol use, smoking, drug use (even if it was decades ago), over-the-counter supplements, exposure to chemicals — all of it can affect how our bodies respond to treatment today. If we leave that out, intentionally or not, we risk being prescribed medications or doses that don’t work — or worse, that do harm. And we can’t turn around and blame the doctor if they’re working with an incomplete story.

That goes for what we’re doing right now, too. Are you self-medicating and not saying anything? Even if it’s legal, even if it feels harmless, your care team needs to know. I live in a state where medical marijuana is available, and I wondered if it might help me overcome insomnia, a typical Parkinson’s symptom. I’m the squarest guy you’ll ever meet — thanks to a career where I was subject to regular and random drug testing, I never experimented with pot. So, I asked my doctor.

She can’t prescribe it, but she took the time to explain how it might help, what the downsides could be, and how it might interact with my current meds. That conversation mattered. It enabled me to make an informed decision, and ensures the doctor has an accurate record of what I am taking - both prescription and nonprescription.

Doctors depend on a complete and accurate medical history — especially when prescribing medications for complex conditions like Parkinson’s. Without it, even the most well-intentioned care team may be working in the dark. In fact, when pharmacists take detailed drug histories at admission, medication errors drop by half and adverse drug events fall significantly (PMC).

Managing Parkinson’s isn’t just about what they do for us. It’s also about what we’re willing to share, admit, and take responsibility for.

Owning Our Piece

Parkinson’s is, in many ways, unfair. Most of us didn’t see it coming, and we didn’t sign up for it. But now that it’s here, the question becomes: what do we do with it? Casting blame isn’t always wrong. When there’s real culpability, it’s appropriate to hold people and systems accountable.

But in many cases, they didn’t know. Long-term effects of exposure were underestimated, overlooked, or not fully understood. Most chemicals and treatments were tested, but not everything was caught. The most important thing now is understanding the causes — so that better treatments, protections, and maybe even a cure can follow.

That process requires honesty on all sides. Industry, government, and medicine must acknowledge their roles — sometimes passive, sometimes willful — in shaping environments where preventable harm occurred. But we also have a role to play. It's not about shouldering all the blame, but about helping researchers and clinicians understand the whole story. Because if we want answers that lead to action, we all have to own our piece of it.

Recommended Voices

I’m not the only one writing or speaking honestly about Parkinson’s. If this post, or any of my previous ramblings, resonated with you, you might also appreciate the insights, humor, and honesty shared by others in the Parkinson’s community. Here are a couple of voices worth checking out:

• Phil Bernstein – Shakin’ Street
  Phil launched Shakin’ Street in May 2024 when he retired, a year after his Parkinson’s diagnosis. Every couple of weeks, he tackles whatever’s on his mind — from tools that make life easier for people with Parkinson’s, to aging in place, to the ethics of using the term “Parkie.” It’s smart, personal, and full of perspective. Shakin’ Street can be found here.

• Tim Lockard – My PD Party
  Tim has built a growing online community for people with Parkinson’s through his My PD Party platform. He posts frequently on Instagram (@mypdparty), hosts the My PD Peeps Podcast on YouTube, and is a passionate advocate and fundraiser for the Michael J. Fox Foundation. You can support his efforts here. If you’re looking for connection, energy, and community — he’s a great place to start.

It turns out the problem wasn’t writer’s block. It was grammatical — or more precisely, verb tense. I kept writing about adapting to Parkinson’s as if it were past tense — something I had done or something I would only have to do once. But Parkinson’s doesn’t allow that. It’s not something you adapt to once. It’s something you have to adapt to again and again, because the ground is constantly shifting.

That’s the exhausting part — not just adapting, but re-adapting, never knowing how long the latest fix will hold. While my goal is to adapt, the reality is that I will never be fully adapted, because Parkinson’s will never stay the same.

Muscles at Odds

The root of the problem lies in the brain’s production of dopamine, the chemical messenger that helps regulate movement. In Parkinson’s, dopamine-producing neurons die off, and the brain loses its ability to send smooth, coordinated signals to muscles.

That breakdown shows up in how muscle groups interact. Most movements rely on a coordinated effort between what's called agonist and antagonist muscles. The agonist is the primary mover, like your biceps when you bend your elbow. The antagonist — your triceps in this case — relaxes to allow the motion.

In Parkinson’s, those signals get scrambled. Both muscle groups may contract simultaneously, rather than working in a balanced manner. It’s like trying to bend your elbow while your triceps are fighting your biceps the entire way — the movement becomes jerky and strained, instead of smooth and automatic.

Over time, even the simplest tasks can become difficult. To compensate, a person with Parkinson’s disease has to make adjustments.

Where My Adjustments Are Happening

Full Tank… or Running On Empty

In the Parkinson’s community, we often talk about being on or off. The terms are used to describe whether someone is functioning well or struggling with symptoms. Proper medication management plays a significant role, as does effectively managing energy, stress, and expectations. This means doing the right things consistently: exercising, eating well, sticking to a schedule, and paying attention to how I feel in the hours between doses.

When I’m on, my meds are working, my movements are smoother, and I can function pretty well. When I’m off, it’s like trying to move through wet cement — everything slows down, stiffens up, or stops cooperating entirely. The trick is learning how to extend the on periods and reduce the severity of the off periods.

Being on feels great, but I’m learning to pace myself so I don’t pay for it later. And when I’m off, I try not to panic — I remind myself that it’s temporary, and that with the right support and routine, I’ll get back to center again.

Therapy Tune-Up

I’ve been attending physical, occupational, and speech therapy for the last couple of months. The physical and speech therapists released me last week after conducting thorough evaluations, establishing disease progression baselines, and showing me exercises designed to slow the progression.

I’m still attending occupational therapy because my biggest issues so far involve fine motor skills. My therapist will conduct a progress evaluation at my next session to determine if I need to continue. I’ve learned a great deal and won’t be disappointed if they recommend additional sessions.

I expect I’ll need more physical therapy in the future as the disease progresses. Anytime my abilities decline, my neurologist team will reassess and likely prescribe more sessions.

Small Moves, Big Effort

Although I have some issues with walking and balance, the most significant challenges I'm currently facing are with fine motor skills. I’ve switched to an electric razor and rely on my barber for beard trimming. Electric razors aren’t as close-shaving as traditional ones, but at least I don’t cut myself.

Wardrobe Wrestling

I can still dress myself, but it takes more time and deliberate effort. Large buttons are OK, but Phil — my PD persona — seems to enjoy complicating things when it comes to the small buttons on dress shirts or button-down collars. The belt and big buttons on my trousers can be a little tricky at times. If I’m in a public restroom during an off period, with a couple of impatient people behind me waiting for the urinal, the pressure adds another layer of difficulty.

I also struggle more now to put on a button-up shirt or jacket. I used to start with my left arm, leaving my dominant right arm to find its way into the right sleeve. Now that Parkinson’s is affecting my dominant side, I’ve had to reverse the process. It works for now. I expect that I’ll have to adapt again when symptoms show up on my left side, too.

Culinary Gymnastics

Navigating the dinner table can become tricky during an off period. Honestly, this is the area that scares me the most. I’m convinced my dad’s decline began when he lost the fine motor control needed to feed himself. Eating became so frustrating that he eventually stopped trying.

People with Parkinson’s, or similar disorders, often say, “I can still wipe my ass, so I’m doing great!” Me? I could live with someone else doing that part — it’s a nasty job anyway — but I don’t want to depend on someone else to feed me.

Thanks to my occupational therapist’s recommendations, I’ve started using weighted silverware to counter Phil’s interference. So far, so good. On July 4th, I smoked St. Louis-style ribs. After six hours in the smoker, I had to ask for help slicing them — my hand wouldn’t cooperate with the repetitive motion. My therapist suggested that I try a rocker-knife, like the ones used by people with movement disorders. We’ll see if it helps.

Chasing the Cursor

As I’ve shared before, the degradation of my typing ability was what finally prompted me to see the doctor. I used to be a fast, efficient typist.

Now I type more slowly and make more mistakes. Editing as I go is difficult — using the trackpad to navigate the screen is a challenge, and the constant corrections disrupt my train of thought. What once took three to four hours now takes much longer.

To cope, I force myself not to edit until the first draft is done. It’s messy, but at least I can keep my thoughts flowing. Then I go back and clean it up.

Still in Beta

I used Grammarly years ago while writing for an online publication. It’s an AI-powered editing tool that checks grammar and suggests improvements. It’s helpful — but it’s not a time-saver.

I’ve also started experimenting with dictation apps and other AI tools, but so far, nothing has wowed me. Some have steep learning curves. Some just don’t fit the way I work. I’m still exploring.

No Finish Line

Adaptation, for me, is now a daily process. As the disease progresses, it will become a lifelong condition. I’ll continue to adjust and look for tools and methods to compensate for ever-changing symptoms, because Parkinson’s doesn’t stand still — so, neither can I.

In an upcoming post, I’ll take a deeper dive into my experience with physical therapy — what worked, what didn’t, and how it’s helping me build a foundation for what comes next.

I still admire philosophers and psychologists. Psychology was born from philosophy, after all. But since I don’t have the hair for a ponytail—or the weed budget of a philosopher—I’ll never fully fit in with that crowd. That won’t stop me from butchering a few theories today.

When Confidence Cracks

The unpredictability of the day-to-day unknowns of Parkinson’s begins to chip away at your self-confidence. The hardest part isn’t always the symptom — it’s what it does to how you see yourself. Tasks that once felt effortless begin to require thought, patience, or assistance.

Let’s talk about help. Everyone needs it from time to time—even folks without Parkinson’s. I’m not shy about asking. I’ll swap plates with Christine at a restaurant if Phil is determined to impede my use of a steak knife.

Does my self-confidence take a hit? Yes. But I’m coming to terms with it.

What really gets to me is when someone offers help before I ask. That’s when I snap:
“No, I’m not an invalid—yet!”

It’s not fair to Christine, I know. But there’s a difference between struggling with something and being unable to do it. Sometimes I need to prove to myself that I still can.

F--- you, Phil.

Who’s Phil?

You’ve heard people say, “I think X… but a part of me thinks Y…” That’s your inner committee. Like the angel and devil on your shoulders—one lifting you up, the other dragging you down.

Now I’ve got a third voice: Phil.

Phil is the embodiment of my Parkinson’s—uninvited, relentless, unpredictable. He doesn’t speak so much as interfere. He shows up in my handwriting, my gait, and in the tremors that complicate the everyday.

Why name him Phil? Sports analogy incoming…

The Knuckleball Life

A curveball is meant to fool you. It’s deceptive but manageable—if you see it coming.

A knuckleball? That’s chaos. Thrown with almost no spin, it floats, darts, and flutters. Even the pitcher doesn’t know where it’s going.

Phil Niekro, the greatest knuckleballer of all time, once said:
“I never knew where it was going. And if I did, I wouldn’t throw it.”

That’s why I named my Parkinson’s alter ego Phil. Because Parkinson’s isn’t a curveball — it’s a knuckleball.

It doesn't come at you fast, but it’s unpredictable. Every day is a guess. You don’t know what symptom will appear next, when, or why.

How You Stay in the Game

Ever tried to hit a knuckleball? It floats, dives, and refuses to behave — kind of like my right leg on a bad day. You don’t predict it. You don’t power through it. You stay loose, stay balanced, and hope your timing holds up.

Parkinson’s throws those same kinds of pitches — slow-moving but tricky, unpredictable in all the wrong ways. That’s why I go to the gym. Not because I know what Phil’s throwing tomorrow. I go because I don’t.

Strength, flexibility, rhythm — they’re my batting practice. I may not hit every pitch, but I’m staying in the box, so far.

Because here’s the thing: Phil Niekro was great — but he wasn’t unhittable.
Johnny Bench posted a .900 OPS against him and took him deep six times. One of the best catchers in history made a living off the game’s most unpredictable pitch.

And that’s what gives me hope: Phil — my Parkinson’s alter ego — might be unpredictable, but he’s not unbeatable.

The only way to face a knuckleball, or Parkinson’s… is to keep showing up to the plate.