Tuesday, January 23, 2018

A race to reclaim my life

Five days before my 50th birthday, I found myself on the boardwalk on Hollywood Beach in South Florida standing amid a crowd of runners. I had asked the organizers of the 5K to note on my number, 827, that I had Parkinson's — just in case.

Since I was officially diagnosed in 2008, the disease had slowly robbed me of movement and chipped away at my independence. I had lost my job and my home. I'm still paying off bills for doctor and emergency room visits.

As I waited for the race to start, I told myself I just had to finish. I could walk, jog or run but I had to cross the finish line. The time didn't matter, as long as I made it. I was the only one who could control the outcome; I was the only one who could reclaim my life.

I smiled and took a selfie.

• • •

It had started with a tremor in my thumb.

I was earning my MBA while working full-time as a journalist and trying to adopt a child as a single woman.

A tiny voice in my head reminded me that my uncle had had tremors, and he had Parkinson's. I had a moment of fear, but I quashed it. The average Parkinson's patient is old, white and male. I was a Hispanic woman in her 40s. I was clearly not the key demographic.

Then my left foot started cramping. I went to see a neurologist and eventually, after several months of ruling out everything else, my worst fear was confirmed: He referred me to a Parkinson's specialist.

I went home and cried.

I went through several doctors before I found one, at the University of South Florida's Parkinson's Disease & Movement Disorders Center, who could handle this journalist and all her questions.

I started taking the medications my doctor prescribed reluctantly, trying hard to follow the rigid schedule required. I hate structure and taking pills for anything has always made me uncomfortable, but I had no choice. The pills eased my symptoms, allowing me to work and keep the Parkinson's a secret.

It would take me a year to work up the courage to tell my parents, especially my father. The uncle with Parkinson's was his brother.

The doctor cautioned me that there was no way to predict how bad it would get — the symptoms could remain mild or I could get worse.

The good news, he said: You don't die from Parkinson's. But I had stopped listening. My life began to unravel.

I became reckless, hell-bent on having a good time before the disease took complete control. I shopped like crazy, partied and drank hard. I ignored mundane tasks, like paying bills and taking care of my house.

I gave up on my personal and professional dreams of adopting a child and running a newsroom. They would have caused me too much stress, something that aggravates Parkinson's.

Every night for months I embraced the stages of grief: denial, anger, bargaining. Since insomnia is one of the major side effects of Parkinson's medications I didn't sleep, often reaching out at 3 a.m. to a cousin, who patiently talked me off the ledge every time.

And I constantly battled panic attacks. Sometimes, as I clenched my body and squeezed my eyes shut, only the soothing voice of a friend could calm me, like a dog responding to a whistle no one else could hear.

So I drank and partied even more. Until the night I ended up in the bathroom of a bar in a fetal position, heart thumping, with my worst panic attack ever. I woke up in the emergency room, my kid sister standing next to me with an anxious face.

The emergency room doctor read me the riot act for drinking with all the prescription drugs I was taking.

I realized I was exhausted fighting Parkinson's this way. I knew then I had to try to regain control of my life even if only for a little while. I focused on learning how to live with Parkinson's.

I knew eventually the disease could consume me so I wanted a treatment that would offer me a better quality of life now. I landed on Deep Brain Stimulation or DBS.

Brain surgery.

Letting go of control

As the oldest daughter of conservative Cuban parents I am considered the daredevil in the family for becoming a journalist. I have covered hurricanes, fires, murders. I also have been skydiving.

Brain surgery, however, was not on my bucket list. But I hoped the radical move would give me back a little of the life Parkinson's was stealing.

As I was wheeled into the operating room with a halo-like contraption on my head to keep it from moving, I said a silent prayer and did one thing I've never done before:

I let go.

I didn't open my eyes once during the four-hour operation. Doctors inserted wires in my brain to help compensate for the loss of dopamine, one of the critical compounds in telling your muscles to get moving.

I reassured my anxious family that journalism colleagues had researched DBS and helped evaluate the risks and rewards. And my surgeon was exceedingly experienced.

During the procedure, they woke me up to confirm the wires had been implanted correctly when suddenly I started to feel an overwhelming sadness. I began to cry.

Then, I heard a voice behind my head say, "I think we went in too deep" and just as suddenly I stopped crying. They put me back under.

When I woke up, I thanked God and wept in my mother's arms.

A second operation followed a month later to put two pacemaker-like devices under the skin of my chest and connect them with wires to the electrodes in my brain.

They sent me home to wait for my body to adjust. It would be another month before they turned everything on.

The equipment in my body is produced by Medtronic, a biomedical engineering company with millions of patients around the world.

It's a weird feeling to know that someone else can control how well I move. As the doctors revved me up for the first time my parents watched holding their breath. Suddenly the first two symptoms — the god-awful tremors and the foot cramping on my left side — disappeared. Completely.

Denial, anger and bargaining were replaced by relief, amazement, disbelief.

Racing for my life

After brain surgery I have no fear, especially of failing. (I'm the kid who cried when she got a bad grade.)

Since the surgery I've been trying to sort out what my new life will look like with a lot of bumps and bruises along the way. I'm still struggling financially and dealing with a variety of symptoms as the disease progresses. It is changing me and I'm learning who can handle the new me and who can't.

But I've also had amazing support from family and friends, and been helped by total strangers. And I had survived brain surgery and wanted to recognize it.

Inspired in part by my brother who completed an Ironman, I decided to run a 5k before I turned 50.

I worked with a personal trainer whose father had Parkinson's. He has made sure I never use the disease as a crutch. For months, I trained by running quarter mile laps around the parking lot of his business. He's the one who told me I just had to finish.

Of course, there have been other unforeseen obstacles. Shortly after I started training, I sprained a tendon in my left leg. I was in a removable cast for six weeks and had to start all over again.

The first 5K I signed up for got rained out, then not long before my birthday I got in a car accident and hurt my knee. My brother thought it was crazy to run in the South Florida heat anyway. I almost gave up, but I had something to prove to myself.

I started the race badly.

I took off too fast, eager to keep up with the crowd of runners. Soon I was huffing and puffing. I never thought I'd be a runner. Not social enough for me. But I've found now that it helps me focus and calm myself. I counted the number of steps as I forged my way through, breathing in and out more methodically.

I could have sworn that at one point, through the sweat in my eyes, I saw the finish line move further away.

But 51 minutes and 38 seconds later, I crossed it: Relief. Amazement. Disbelief.

I collapsed on a bench, tears streaming, and promptly overheated. Anxious race organizers spotted me and offered me water.

My brother was right — I had been crazy. But it was worth it, and I have the medal to prove it.

I may not be able to outrun Parkinson's, but a little of the old daredevil in me is back for good.

Marilyn Garateix was an editor at several newspapers, including the Tampa Bay Times. She is volunteer executive director of Voice of Love, a nonprofit in Miami.

© 2015 Washington Post

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