My PD Story

Our names are Ron and Amy, and we were first impacted by Parkinson’s disease upon Ron’s diagnosis in 2017. As a couple, we have truly walked through the “highs and lows” of this disease and understand the significant role it can play in daily life.  

Ron began to develop symptoms after a tragic accident at work and was misdiagnosed for years — it took several failed attempts by medical professionals to determine the true cause behind the tremors, fallsing, and pounding headaches.  

After numerous doctors visits, Ron was finally referred to a movement disorders specialist, who conducted a comprehensive clinical evaluation. Ultimately, a DaTscan revealed a severe dopamine deficiency, confirming his Parkinson’s diagnosis. 

Following Ron’s diagnosis, he was prescribed Parkinson’s medications and our lives improved dramatically. In the years that followed, it was a relief to see symptoms subside through proper treatment and medication management. Amy is a “super caretaker” who helps us both navigate life with Parkinson’s disease. We are truly a team! 

Unfortunately, we experienced an unthinkable hospital stay in 2023 after Ron developed a severe case of Covid-19. Prior to Ron’s emergency visit, we armed ourselves with his medications and Parkinson’s Foundation resources.  

When we arrived, we requested that these be scanned into his electronic chart, knowing that it was essential that the medical team understood Ron’s diagnosis and the importance of administering his Parkinson’s medications in a timely manner. Despite being assured that Ron’s chart had been updated, we learned later that this had not been the case —– the medical team was unaware of his Parkinson’s. 

As a result, Ron developed aspiration pneumonia and was even placed on a ventilator. He continued to not receive any PD medications. Despite Amy’s pleading, the medical team refused, and for the first time Ron began to experience dyskinesia, a Parkinson’s symptom that culminated in a bad fall while still at the hospital. This caused Ron to go into respiratory failure. It was truly a life-or-death situation. 

Finally, a new doctor saw Ron and took the time to listen to Amy. He agreed to administer Parkinson’s medications and stuck close for several days throughout the recovery period. In the end, the doctor declared that we had made him an even better doctor, as he read through the resources Amy provided (like the Parkinson’s Foundation Hospital Safety Guide).  

While we would never choose to relive this distressing experience, we are now passionate advocates for hospital safety in people with Parkinson’s and care tremendously about educating others.  

What We Want People with PD and Care Partners to Know

Our experience has reinforced that knowledge is power. Patients and caregivers must be proactive and persistent in advocating for their needs. The Parkinson’s Foundation’s Hospital Safety Guide was instrumental in helping us navigate this crisis, and it has become a core part of our advocacy efforts. 

Another crucial takeaway is the importance of the care partner. Amy’s advocacy made a profound difference in ensuring Ron’s needs were eventually met. In addition, we learned how critical it is to ensure accurate patient records, as errors and omissions in Ron’s medical records significantly impacted his care and delayed proper treatment. 

As Parkinson’s Foundation Ambassadors, we have shared our story with hospital administration teams, and we’re proud that our advocacy has already led to positive changes in hospital policies and protocols. 

We are honored to share our journey and hope that our experiences help others navigate similar challenges. 

Our biggest piece of advice is to prepare yourself prior to a hospital stay. Do not be afraid to share information and resources from the Parkinson’s Foundation with the medical team. Keep positive, and never lose hope! 

Advocate for your best care with the Hospital Safety Guide. Learn more and download the guide now.