April 6, 2017

My Hassle with the Hospital about my Parkinson's Meds

On January 20, I fell, fractured my hip, and knew I needed to go to the hospital. I remembered hearing stories from friends with Parkinson’s disease (PD) about complications they’d encountered getting their PD meds on time while they were hospitalized.

I didn’t want any of those troubles, so I packed a secret stash of my carbidopa/levodopa (Sinemet) pills before heading off to Sibley Hospital.

This National Parkinson's Foundation video describes this problem well:

The video offers some startling  stats:
  • People with PD are hospitalized 43 percent more often than others in their age group.
  • When they are hospitalized, 75 percent of people with PD don’t get their meds on time.
  • As a result, 61 percent of those patients develop serious complications. 

The video explains that patients with PD must be vocal and persistent with hospital staff about getting their meds on time. Many hospitals haven’t adopted the Parkinson’s Foundation’s training programs to increase awareness about the importance of maintaining timely medication schedules for people with PD.

As is typical for most Parkinsonians, my Sinemet dosage has increased through the years, and now I’ve reached the maximum dosage as far as my prior neurologist was concerned. These days, I normally take two pills every three hours: at 2am, 5am, 8am, 11am, 2pm, 5pm, 8pm, and 11pm.

Here’s a complication: I don't set an alarm to take the pills at 2am and 5am. My body simply wakes me up when it decides I need those pills. The intervals vary. Sometimes I’m OK with only one pill-time during the night. As a result, I wouldn’t want hospital nurses to automatically wake me up at 2am and 5am. That rigid schedule wouldn’t serve me well.

As you might expect, the hospital staff balked when I suggested I’d prefer to manage my own pill schedule… a reluctance I understand. Still, that pill schedule remained a hassle while I was in the hospital.

But when I transferred to the rehab center, one of the sign-in forms gave me the option to manage my own meds. I gladly accepted that option for my PD Sinemet pills.

The nurses assigned to my room played a little game about who would best remember my pill times. But they knew there was no need to wake me during the night to take pills.

I can understand why a hospital would be reluctant to give patients that option.


Diane J said...

Hi John , one problem I've run into is needing to take sinemet before a colonoscopy . Really a necessary med, but the MD doesn't want you to take anything by mouth.

Paula Sanders said...

Hi John,
I was recently hospitalized & then in a rehab center for three weeks following back surgery. I had a terrible time getting my meds on time and only found out that I had the option to manage my own meds. Delays twice caused what I call "Parkinson's Crises" where I am shaking like a rigid leaf and need a narcotic to get the tremor under control. Unnecessary misery. I will take a "stash" next time.

Paresh Doshi said...

Nice blog, would like to know more.

Parkinson's Disease