January seems like a good time to hit a reset button. Last year, 2024, was a difficult year to be sure. Jay, my husband and I lost several friends and family members including his brother-in-law Jeff. Other friends and family members were dealing with difficult health issues. I stood by several girlfriends who were going through the difficulty of losing a parent. And then there was Hurricane Helene! The onslaught of destruction was massive, widespread across the mountains of Western North Carolina, catastrophic, and indescribable. While we were spared any damage to our property or home, many of our family and friends had lots of damage and loss. We were without power for over a week and had no running water for several weeks. When we did get water, it was discolored and not drinkable. We still refrain from drinking water from the tap although it is clear, odorless and declared potable. It will take decades if not centuries for the mountains to recover from the massive number of trees downed, the reshaping of the streams, rivers and waterfalls, and the landslides. The toll of many deaths, displacement from homes, loss of businesses and jobs, is ongoing and there is still a feeling of despair in these mountains. Roads still need to be reconstructed and there remains much debris reminding of us the unfathomable power of nature. So yes, for me I need a reset.
For starters, I ran a 10K on behalf of the Michael J Fox Foundation last week at Walt Disney World. It was good to connect with others supporting the cause of finding a cure for PD. I was impressed with the comradery among the group of participants and their families. I had a woman who was running in memory of her father who graciously stuck with me the entire run. She was my pace setter, and I couldn’t have had a better partner. She made the race fun and kept me going. We crossed the finish line together with jubilation. Thanks Kelly Morris.
I plan to continue hiking and planning hikes for my hiking group. Many of the trails are still closed due to trees obstructing the paths but it has been amazing how many have been cleared. Parts of the Blue Ridge Parkway remain closed making access to many of the nearby trails impossible. But there are lots of places yet to go and it will be interesting to see how things have changed. The members of my hiking group have been very supportive of both my hikes and my journey with PD. I’m very grateful to have them in my life.
I plan to continue my advocacy for the MJFF (Michael J Fox Foundation) by sharing my story as opportunities arise. The highlight of the year was having our group of nine who climbed Mt. Kilimanjaro selected to be the keynote feature at the MJFF MVP Awards Gala in NYC last April. I was honored to be one of the featured speakers. I was able to give several presentations of our climb to support groups and local interest groups. I was also invited to be a panelist at a seminar put on by the MJFF in Charlotte last October. Next November, I have my eyes set on another climb. This time it will be to hike three volcanoes in Guatemala in November. It will not be as difficult as climbing Mt. Kilimanjaro as it will be mostly day trekking at altitudes below 13,000 ft. There is one day where we will make a 5000 ft. elevation gain though. So, be on the lookout for my fundraising campaign that I hope to launch later this year.
Sadly, I have discovered that not everyone supports my advocacy and fundraising efforts for the MJFF. Some have voiced to me that they would never support anyone who seeks to raise funds by accomplishing athletic feats for a cause. They question the integrity of the MJFF and the research they fund. It has been difficult to realize that there will be friends, even close friends, that I may have to distance myself from since this has become a big part of my life. It has been equally difficult to realize that not everyone is going to be there for me as I manage life with PD. When I was first diagnosed, I was fearful that people might see me as damaged or needy. While my network of support is vast and strong it has been difficult to experience one or two close friends who have not been there for me when I have reached out to them. Those experiences make me want to withdraw and hide what life with PD is like. It makes me not want to share my personal struggles living every day with diminished dopamine levels. The posts I have written in my narrative put a positive perspective on what I experience. And to be truthful, I am doing very well and have a high level of function. My outlook is good and my willingness to fight for quality of life is strong. I want to inspire people with what can be accomplished by taking charge of one’s life, not show the reality or the downside of PD. But living with PD has daily struggles that I tend to hide from others. I feel like I am in a tug of war with it and sometimes I’m winning and sometimes PD is pulling me closer to the line. Maybe as I come to accept my difficulties, I can be more willing to share them with others. Maybe if I am willing to be authentic I can inspire others with PD to be open about their diagnosis. Maybe I can be more effective in supporting others and show those without PD how to offer comfort, empathy, and understanding to their friends and family members who have PD.
So, as I look to reset my goals and priorities for 2025 I want to make a difference in many ways. I want to advocate better for the people like me who have PD. I want to bring better awareness to those who don’t understand what PD is and how it can affect one’s life and struggles. I want to continue to fight for vibrant living. I want to make a difference.
© Copyright 2025. Lucretia Pintacuda. All rights reserved.
Trekking Upward 