35. What’s Driving Me to take on Guatemala

In three months, I will be in Guatemala already embarked on my quest to climb three volcanoes.  This will be an effort in endurance, perseverance, strength and courage.   I have been wondering lately what is driving me to do this.  I think I just might be crazy!  Let me assure you that it is not to bring attention to myself.  I wish every day that I did not have a neurogenerative disorder, and certainly not one who’s symptoms are very visible and disabling.  I have been considering the answer lies party in the foundation of my upbringing.  

I was the only girl with four brothers raised by the two most hard-working parents I have ever known.  That was the kind of hardworking where they were up before dawn and worked till way past sundown.  Mom was raised on a dairy farm in Ohio where the cows had to be milked twice a day every day of the year.  In-between the milking sessions the farmer has lots of chores to do and feed to grow for the cows.  My dad was a surgeon at a small mountain hospital where he was literally on call 24/7 all year long.  Mom wrote a chore list for each child every day except Saturday which in our household was the Sabbath.  Sometimes, she would tell us to get all our chores done and she would take us swimming for an hour of so at the neighborhood pond.  The core family value was to be industrious and do your best at whatever you set out to do.  They were purpose driven parents that instilled that feature into the very fabric of their five children.  We learned how to work hard, play hard, and to be servants to others. 

I lived a full and rich life traveling to destinations near and far, taking up sports like backpacking, scuba diving, snow skiing, hiking and racquetball.  I’ve also gone on several humanitarian trips to third world countries to provide medical care where the needs are overwhelming.  When I diagnosed myself with PD at the age of 61, I wasn’t about to lay down and roll over.  I wanted to do everything I could to slow down or end the progression of what it was doing to my body.  I was already very physically active but now I made it a necessary part of weekly life.  I never smoked, ate a mostly plant-based diet with much of the produce homegrown in our organic garden, drank alcohol very sparingly, and did other things pertinent to a healthy lifestyle.  

When I retired at 65 from my postgraduate healthcare career, there was no question what my new mission and purpose would be.  I decided to go public about my diagnosis by undertaking a grand journey to the summit of Mt. Kilimanjaro.  I had and still have the goal of bringing awareness about PD, inspiring others, and raising funds for research to end this dreaded disease.  After I survived climbing to 19,341 ft. elevation what next?  

Sometimes, I think I project how well a person can live with this disabling disease that I may be camouflaging what daily life is really like.  It is a movement disorder so everything that involves movement is affected. From blinking my eyes, chewing food, putting on clothes, swinging my arms when I walk, the adaption my pupil makes to accommodate to changes in light, the activity of my GI tract, turning over in bed, and cooking are some of the things I deal with.  My speech has become softer, I choke at times, my gait can be off when I walk, and standing in one place for any length of time is difficult.  I can’t seem to get my smile right anymore.  There are numerous chores around the house and yard, and so much more that affect my everyday life.  But it is not just movement that is affected.  There are many nonmovement symptoms that make life difficult and unpleasant.  My sense of smell was diminished many years before my diagnosis.  Imagine not being able to smell bread baking in the oven, the fragrance of fresh flowers, newly mown grass, or evergreens at Christmas.  I can’t enjoy the aroma of fresh brewed coffee or the scent of a new baby.  And in our house, I can’t smell the fresh aroma of Sunday tomato sauce.  I also can’t smell soured milk or spoiled food and other odors that alert me to potential dangers.  My nose will start dripping for no reason and without warning.  REM sleep disorder is very common for people with PD.  I have vivid dreams and at times, wake myself and my husband up with screams of terror. I sweat more profusely than before PD.  But the worst nonmovement concern is difficulty with mood regulation.  Anything stressful is more difficult to manage and anger outbursts are another characteristic of it. Depression goes hand in hand with PD.  I fear I am losing my personality and friends will not understand my need to keep things on a level field emotionally.

At my first appointment with my Movement Disorder Specialist, he told me the good news is that PD doesn’t cause death nor shortchange life expectancy.  But it does chip away at what makes one who they are.  It robs so much from daily life.  People are more prone to falls and other health risks which can cause life changing injury.  It robs one of their sense of identity and their ability to be active and social.   It’s like watching your life evanesce, as steam from a slowly simmering pot of tea disseminates into the air.

So, what’s next for me?  I want to continue to live a full and vibrant life.  I still want to inspire others with what can be accomplished with determination.  And I want to raise funds for research. The Michael J Fox Foundation has the number one goal of finding a cure or way to end PD.  Watchdog rating groups that score foundations give the Michael J Fox Foundation an A+ rating.  Their research department is doing amazing work, and this has resulted in greater understanding of PD and breakthroughs that are already helping those of us with the disease.  PD is surpassing Alzheimer’s as the leading neurogenerative disorder.  If PD hasn’t already touched you, a loved one, or an acquaintance, you likely will be touched personally by it in your lifetime. If you would like to be part of the cure, I invite you to contribute to my fundraising campaign.  ONE HUNDRED PERCENT of the donations go directly to research.  As for me, I will continue to fight the fight.   

https://give.michaeljfox.org/fundraiser/6315010

© Copyright 2025. Lucretia Pintacuda. All rights reserved.