I Didn’t Know How Much Parkinson’s Would Change
Before Parkinson’s, my life was pretty normal.
I had a family. I had a career in technology that I had spent years building. I was working, raising kids, making plans and doing the things people do when they assume tomorrow is probably going to look a lot like today.
Then little things started happening.
My wife and I would walk through our neighborhood, and she noticed that my left arm wasn’t swinging normally. At work, I noticed something different with my left hand. I had always been able to type quickly, but suddenly I couldn’t type the way I used to.
At first, these were just strange little things that didn’t have a name.
Eventually, they did.
The Day It Got a Name
As the problems with my arm and hand became more noticeable and other symptoms appeared, my wife and I agreed that I needed to see our family doctor.
He referred me to a neurologist.
I was 44 years old when I walked into that neurologist’s office. I went alone. I remember noticing that most of the other people in the waiting room were much older than I was.
I wasn’t expecting what came next.
The neurologist examined me and then told me that it looked like I had Parkinson’s disease.
Parkinson’s wasn’t completely foreign to me. My father had Parkinson’s, so I already had some idea of what that word could mean.
I cried on the drive home.
My mind went immediately to my future. My career. My family. What was going to happen to me? What was I going to tell my wife?
When I got home, I told her:
“I have Parkinson’s.”
We held each other and cried.
Then I did what came naturally to me.
I started researching.
I wanted to understand what I was dealing with. I wanted information. I wanted some sense of control over something that suddenly felt very much outside of my control.
Then Something Surprising Happened
I started medication.
And it worked.
In those early years, medications such as Sinemet managed my symptoms so well that I felt almost completely normal again.
I remember thinking that maybe Parkinson’s wasn’t going to be as big a deal as I had feared.
I’ll take medicine every day. It’ll control this. I can live with that.
And at that point in my journey, that wasn’t denial. The medication really was working that well for me.
But eventually things began to change.
The symptoms that had originally brought me to the doctor weren’t the only symptoms anymore. New ones appeared. Medication didn’t seem to last as long. Things became harder to control.
Looking back over more than 12 years with Parkinson’s, I tend to divide my experience loosely into thirds. These aren’t medical stages. They’re simply the way I remember my own progression.
During the first third, the changes seemed slower and medication management was relatively straightforward.
During the second, more symptoms appeared. They became stronger and seemed to arrive faster. Medication became a much bigger part of managing my day.
And in this current part of my journey, Parkinson’s has become something very different from the disease I was diagnosed with in 2014.
Parkinson’s Wasn’t Happening in a Vacuum
There were also years when Parkinson’s wasn’t the only difficult thing happening in my life.
For roughly six or seven years, much of my life was unstable. There were periods when I didn’t really have a home of my own. I bounced around. At times I slept in places like office buildings. Much of my attention was simply focused on surviving whatever was happening next.
During those years, Parkinson’s sometimes had to take second place.
Not because it wasn’t important.
Survival was number one.
Where am I going to live? What’s going to happen to me? How am I going to get through today?
Parkinson’s was right behind it.
Eventually that changed.
Parkinson’s forced itself into the number-one spot.
It didn’t become number one because I chose to make my life revolve around Parkinson’s. It became number one because the disease became too demanding to remain secondary.
Sometimes I wonder how different my Parkinson’s journey might have looked if the circumstances surrounding me during those years had been different.
I’ll never know.
What I do know is that Parkinson’s was progressing while I was trying to survive everything else happening around me.
When Parkinson’s Reached My Career
I spent more than 27 years working in technology.
My career depended on my ability to use my hands, think through complicated problems, communicate with people and lead.
Parkinson’s eventually began interfering with all four.
For a while, I tried to hide it.
If my hand was shaking, I might put it behind my back or stick it in my rear pocket so somebody wouldn’t notice.
But some of the hardest symptoms weren’t necessarily the ones other people could see.
Anxiety became a major problem.
Before Parkinson’s, I could lead meetings, work with clients, give presentations and train people without thinking much about it. If I knew the subject, I was comfortable standing in front of people and talking about it.
Then there were times when I would be preparing to walk into a meeting and my body would react as though I were facing something terrifying. I would sweat. I would shake. Sometimes I couldn’t make myself walk into the room.
My thinking changed too.
At some point, I realized:
I couldn’t think like I used to think. And it wasn’t old age. It was far more severe than that.
Eventually, the career I had spent decades building came to an end.
When Medication Wasn’t Enough Anymore
There was a time when taking a pill could make me feel almost 100% normal.
Eventually, medication alone wasn’t getting me there anymore.
After we had pushed medication management about as far as we could, one of my doctors told me, essentially:
“Landon, I’ve treated your Parkinson’s as best I can. I think I’ve treated it as far as I can. I don’t think there’s anything else I can do with medication to make it better. Our next option is DBS.”
Deep brain stimulation was my decision.
But reaching the point where DBS needed to be considered wasn’t something I chose.
I decided to move forward.
DBS: A Base Hit, Not a Home Run
Immediately after DBS surgery, things didn’t go the way I expected.
There were problems.
For a while, I actually wondered whether I had made a mistake.
Over the following months, we worked through some of those problems. Eventually somebody asked me whether DBS had helped as much as I had expected.
After listening to me describe what it had and hadn’t done, they said something like:
“So basically, DBS was a base hit, but it wasn’t a home run.”
That was exactly how I felt.
I had heard stories from people who described DBS as a miracle or a complete game changer. That wasn’t my experience.
It helped. But I didn’t suddenly get my old life back.
Looking back now, however, I think I probably underestimated what that base hit gave me.
The biggest difference was this:
DBS raised my low end.
Before DBS, some of my worst OFF periods could take me extremely low. DBS didn’t eliminate those lows, but it seemed to raise the floor underneath them.
I also gained another tool for managing my symptoms. Within the settings programmed for me by my DBS team, I could use my remote and sometimes get much more immediate feedback than I could from taking a pill and waiting to see what happened.
It wasn’t a home run.
But years later, I appreciate that base hit more than I did at the time.
Parkinson’s Today
The Parkinson’s I live with today is not the Parkinson’s I was diagnosed with more than 12 years ago.
If I had to estimate it, I would say Parkinson’s occupies 98% of my day.
I’m either experiencing a symptom, trying to manage a symptom, or thinking about what I need to do next.
When should I take my next medication?
Should I eat?
What should I eat?
Should I adjust my DBS?
Why am I hurting?
Do I need to sit down?
Should I stop what I’m doing?
Do I have a doctor’s appointment?
Do I need to call somebody about another problem?
Even while I was being interviewed to write this page, I was dealing with dyskinesia, walking around, thinking about my DBS, wondering whether I should eat something and deciding whether I needed to stop working for a while.
That’s Parkinson’s for me today.
Almost every decision has Parkinson’s somewhere in the calculation.
And yet, strangely enough, Parkinson’s has also changed the way I see what I still have.
It Humbled Me
If you asked me what Parkinson’s has changed about me as a person, one of my first answers would be:
It humbled me.
If Parkinson’s occupies something like 98% of my day, I’ve learned to be thankful for the other 2%.
Those numbers aren’t measurements. They’re simply my way of describing how much of my life this disease consumes.
But I’ve also learned how much it means when somebody helps me.
When somebody notices.
When somebody gives me their time.
When somebody makes a difficult day a little easier.
Experiencing that has changed the way I look at other people who are living with diseases, disabilities and challenges of their own.
It has made me want to turn around and do for somebody else what other people have done for me.
That’s become part of my mission:
Help people. Serve people. Add value to people’s lives.
And that’s a big part of why this website exists.
What I Would Tell Someone Just Diagnosed
I’m not going to tell you Parkinson’s is easy.
When I was diagnosed, I appreciated brutal honesty. I still do.
One of the first things I had to understand was that Parkinson’s is progressive and that the treatments available to me were helping me manage the disease, not removing Parkinson’s from my body.
That was difficult to accept.
It’s still difficult.
I also know that my story is my story.
Your Parkinson’s may not progress like mine. Your symptoms may be different. Your response to medication may be different. Your experience with treatments may be completely different.
I’m not telling you what your future will look like.
But I will tell you this:
Knowing that Parkinson’s can take things away has made me much more aware of the things I can still do today.
I don’t want to wait until I’ve lost something to recognize what it was worth.
And if you’re struggling with what Parkinson’s has already taken from you, I’m certainly not going to judge you for being angry, scared, frustrated or negative about it.
I’ve been there.
I still go there.
But more than 12 years after hearing the words “You have Parkinson’s disease,” I’m still here.
I’m still thinking.
I’m still creating.
I’m still trying to help people.
And I’ve realized something about all these experiences I’ve accumulated along the way:
I’ve already lived them.
If something I’ve learned through them can make somebody else’s road a little easier, then I want that person to have it.
That’s why I created PD Through My Eyes.
I’m not the expert on Parkinson’s. I’m the expert on me.