My PD Story

My Parkinson’s Experience

Parkinson’s disease (PD) has haunted my family for two generations. I became aware of the destructive nature of this disease when I was very young. On my maternal side, my mother, her father and great aunt died from Parkinson’s complications. 

My mother, Ana Victoria Diaz, who took care of my grandfather and great aunt, feared the mere thought that she could have Parkinson’s as well. She hated when we dragged our feet in our shoes, because it reminded her of the sound of her father’s slow walk. As she aged, she would check for tremors in her hand and would make sure her penmanship was as perfect as always. “Good, I don’t have Parkinson's" she would confirm with relief. 

That's why it took us by surprise when her pulmonologist, yes, the lungs doctor, told Mami her face seemed frozen and recommended she get tested for Parkinson’s. We were so upset at that doctor for even suggesting it, but my brave mother went alone to get the MRI and all by herself to get the diagnosis. At age 77, a neurologist confirmed to Mami that her family’s boogie man was coming for her. We were all upset and scared. 

Mami was terrified because all she could think of was how much her father and aunt had suffered from Parkinson’s but her doctors were optimistic. She had early onset and at her late age. We knew what they meant, Mami was “lucky” she wasn’t diagnosed in her thirties or forties. Plus, they assured her that modern medicine had improved and would allow her to keep the PD symptoms at bay.

Indeed the medication worked as promised and in the first few years, Mami had tolerable and intermittent tremors that came and went. Her face was indeed frozen, so my joyful Mom started to look serious and sad. Sitting for long periods of time would stiffen her legs making standing up an ordeal. 

By year five we started noticing a worsening in her condition. Medication had to be adjusted and it was slow to work. Mami, whose happiness was contagious and whose positive attitude made our lives so much better, was often depressed, quick to cry and constantly negative. 

Shortly after that, she had trouble sleeping at night and started hallucinating. The last year of her life, her tremors were more intense, she was wheelchair bound and required constant care. We started mourning the mother we knew way before she passed away.

Throughout this whole heart wrenching journey, my mother looked up all the information she could online about Parkinson’s. She found it very helpful to know what was coming and how she could best deal with it. My father, my brother and I preferred to get our information from Mami and her neurologist. At the end, when Mami was no longer able to carry a conversation and her doctor didn’t answer our calls fast enough, the three of us felt lost, scared and helpless. 

My mother Ana Victoria knew the worst was yet to come and she wanted absolutely no part of it. “I don’t want a feeding tube. I don’t want to be bedridden. Do not let them keep me alive by external means” was her constant message to us and we promised we would be there for her.

On May 11, 2026, our mother was about to be released from the hospital after 10 days dealing with a foot infection, when she seemed to have aspirated and went into respiratory failure. My brother called me and asked me to come home. I left Chicago for San Juan, Puerto Rico with the mission to make sure my mother’s wishes would be respected. I spent a week by her bedside reassuring her that we were doing everything we could to give her the end she wanted. I will spare you the details of the darkest days of our lives.

On May 24, Ana Victoria Diaz passed away peacefully in her own bed in her beautiful home in her beloved Puerto Rico, finally free from Parkinson’s disease. 

My brother and I are still in that period of relief knowing our mother is in a better place, back to her healthy, joyful self. We miss her terribly but I for one couldn’t stand seeing her so miserable those last years of her life. My father is also relieved that Mami is no longer hurting but he is sad and lonely without his wife of 66 years. 

Yes, I am terrified that Parkinson’s will pass on to another generation of my family. I’m scared for myself, my children, my brother and his daughter. But I’m choosing to channel that fear by helping other families facing this awful, life altering diagnosis, by advocating for more funding for research to find new medications and cure for Parkinson’s disease. 

I will use my platform as a public figure, my talent as a journalist and communicator to help well established organizations like the Parkinson’s Foundation spread awareness about this cruel neurological disease.

More importantly, I want to support our Spanish speaking people with PD, and help their families navigate this dark journey full of challenges and “surprises.”  There is no silver lining when you have Parkinson’s disease. Medications help slow down or ameliorate the symptoms but for the awful end seems to drag on and for now is inevitable. We had the support of loving family and friends, but it was always better when we found someone who had been through this who would validate our feelings and keep us company in the unpredictable and painful path that is Parkinson’s disease.

Read Ana's Story in Spanish

The Parkinson’s Foundation is here for care partners. Explore all stages of the care partner journey and practical tips that can help along the way on our For Care Partners webpages.