Personal Stories

Ending the Silence on Parkinson's

Ending the Silence on Parkinson

Javier Ramirez
Miami

When I first found out that I had Young Onset Parkinson’s I didn’t have the words to explain it to my family.  I told my wife but not my children, parents, or siblings.

My initial reaction to the diagnosis was disbelief. I was not even 45-years-old and was enjoying a full life including a busy work schedule, playing soccer with the guys and spending time with my three sons—I was too young and too healthy to have Parkinson’s.

‘Denial’ was a big part of my decision to keep it a secret. However, I also didn’t feel educated enough about Parkinson’s to explain it to my family. To me Parkinson’s disease was like waking up in foreign country without the slightest idea of how I got there. I didn’t know how to speak Parkinson’s, how to find my way, or what was in store for me or my family.

Culture Shock

I’m originally from Venezuela and spent much of my childhood there and in Colombia. Growing up in the Hispanic community, Parkinson’s disease just wasn’t part of my vocabulary. Even my vague recollections of hearing the word Parkinson’s painted it as a disease of the Western world—a reality far removed from our community.

As a boy, I remember watching my grandfather’s hands shake, like mine sometimes do now—a tell tale sign of potential Parkinson’s. I remember the clatter of his coffee cup against the saucer, each morning like an alarm clock invading my sleep. But his shakes were dismissed as old age; he never saw a doctor.

Learning to speak Parkinson's

This memory stood out to me as I began searching for answers in the months after I was diagnosed. Parkinson’s can be a lonely place no matter what your background, as lack of awareness is rampant. But coming from a culture in which even acknowledging the disease is rare made accepting it even harder.

Even so, I had never been the type of person that backs down in face of a challenge. When I moved to Montreal, Canada at 14 years-old, I was the first of my siblings to learn to speak English—purely because of my attitude. Whereas my sister was shy, I spoke to people wherever I went. I turned my culture shock into an opportunity to learn, rather than a burden that would hold me back. I realized I had to do the same with Parkinson’s.

So, I began reading, researching, talking to people. Support groups and events like NPF’s Young Onset Conferences proved the most valuable learning experiences for me and my wife. The conferences helped us sift through a sea of information and get answers from experts. But most importantly, they created an outlet to build personal relationships and learn from people with similar frustrations and struggles—who never order soup at restaurants, and pray for the day that Velcro shirts are in fashion!

Owning your passions

Through these relationships and the support of my ever-present wife I came to realize that Parkinson’s is just one of the many challenges that life throws at you. It may limit my bicycle kicks but it will never limit my passion.

On Sunday mornings, I still play soccer with the same guys I’ve played with for 20 years. I still coach my sons’ teams. Chess is still my favorite mind game. I still have a demanding career and travel the world. But I come home earlier – I recognize the value of every moment I spend with my family. I pursue my interests, while accepting my limitations. And I am more humble when it comes to the limitations of others. I have learned to have patience with myself. And most importantly to ask for help when I need it.

Accept and Manage Positively

It took three years for me to tell the rest of my family that I have Parkinson’s disease. During that time I told myself that I was protecting them, but really, I was protecting myself.

Reaching the stage of acceptance was not easy and dealing with Parkinson’s is a constant battle. However, rather than ‘accept and surrender’, I have chosen to ‘accept and manage positively.’ I appreciate the pure moments of enlightenment that I would never have known, if not for being part of this fight. I am constantly inspired by the new friends I have made and the unwavering support of my family.

I know now that a better life, in the face of Parkinson’s, starts with talking to the people closest to you. They are a bridge to educating yourself, as well as others about the prevalence of the disease in all communities. By sharing my experiences I hope to end the silence and change attitudes for the better.

My Top Ten list of Parkinson’s Pet Peeves

  1. Buttons: why don’t they make Velcro Shirts?
  2. Toothbrush: hard to use, however the alternative is not pretty.
  3. Belts: am I going to have to start wearing spandex pants?
  4. Boots, shoes, slip-ons, flip flops: they go flying off my feet. Is going barefoot the solution?
  5. Soup: always leads to  more soup around the plate than in my stomach.
  6. Contacts lenses: I guess I can just wear glasses; maybe I will look more intellectual ;)
  7. Sleep. Who needs it? I can never find the perfect position. I’m thinking of trying hammocks - will let you know how it works out…
  8. Writing: my biggest frustration - I avoid it like the plague. I love the look I get from immigration officers when they read my customs form. I just say- “sorry rough flight, there was a lot of turbulence.”
  9. Tiredness: Especially late afternoon, whoever invented the siesta was on to something—probably had Parkinson’s and didn’t know it.
  10. Stress: I shake uncontrollably when under stress, a great tool when I want to win an argument with the wife.

*Photo credit: Gerlinde Photography/Michael Hopkins


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