Living and Learning With Parkinson’s

For most healthy 68-year-olds, navigating the healthcare system can be frustrating. For individuals living with Parkinson’s Disease, it can be a mentally taxing ordeal.

I had a scheduled EKG appointment at 1:30 PM and needed to get some lab work done beforehand. Here’s how I planned my day:

- Leave boxing at 11:30 AM

- Go home to change clothes

- Eat a protein bar

- Spend some time with my dog, Ari

- Arrive at Kaiser Lab by 12:30 PM

- Bring my iPad to read while waiting

- Complete lab work, then head upstairs for my 1:30 PM EKG

- Take my 2 PM medication that I keep in the car around 2:00 PM

The Reality

I arrived at Kaiser at 12:25 PM and took a number. I was called for registration at 1:06 PM. When I mentioned my 1:30 EKG appointment, the registrar informed me that I wouldn’t make it and would need to return after. She noted they were two staff members short that day.

I registered for the EKG at 1:25 PM, but there were about six patients ahead of me. By 1:40 PM, they had all been called in, and I was still waiting for just an EKG. Concerned, I approached the front desk to ask if I had been overlooked. The staff member assured me that I had a 1:30 appointment, but it was now 1:40 PM.

I sat and waited until 1:50 PM, watching other patients being called to their appointments. Again, I inquired if there was an issue, and was once more told there wasn’t.

Fortunately, the front office manager was nearby and checked on my situation. I later learned he had sent an urgent message to the medical staff. However, no one communicated what was happening to me.

After spending 65 minutes in the lab without being seen and now this, I began to tremor uncontrollably, and my anxiety skyrocketed. A nurse noticed my distress and guided me to sit down and breathe while she sought assistance.

By the time I was taken to an exam room for the EKG, I was mentally overwhelmed and experiencing significant tremors. I explained that I couldn’t proceed with the EKG due to my Parkinson’s-related anxiety, and I felt angry and frustrated.

The medical assistant for the EKG went to fetch my doctor, who is fantastic. He sat with me for about ten minutes, helping me calm down. After a brief period of deep breathing alone, I was able to proceed with the EKG.

Next, I worried about returning to the lab for my blood work and potentially facing another long wait. The front office manager had reached out to the lab manager, who arranged for a phlebotomist to be ready for me. I finally had my lab work done.

I left home at 12:10 PM and arrived back at 3:00 PM. For context, Kaiser is less than two miles from my house.

As I mentioned earlier, for most healthy 68-year-olds, this experience would be frustrating but manageable. For many individuals with Parkinson’s Disease, however, the simple challenges posed by the healthcare system can be draining and mentally exhausting.