Written by Nicole Tester, OTS, Ph.D
One-third of all patients with Parkinson’s Disease (PD) visit the emergency department or hospital each year. During these visits, three out of four people with PD do not receive their medications on time or completely miss doses of medication. This can occur for a variety of reasons. For example, hospital staff may be unfamiliar with the complexity of medication regimens and precise timing required to optimize symptom control of the disease and/or hospital pharmacies may not keep all PD medications in stock. Additionally, the focus of the medical team is on treating the condition that brought you to the hospital. This often is a disease-related event such as a fall, pneumonia, or urinary tract infection versus the disease itself. When medications are not administered on time, patients can experience debilitating symptoms including worsening tremors, increased rigidity, loss of balance, confusion, agitation, and difficulty communicating. In turn, there is an increased risk for general deterioration of health. This is corroborated by research that suggests individuals with Parkinson’s disease who are admitted to the hospital typically have longer hospital stays and more often require rehabilitation afterwards compared to individuals without Parkinson’s disease.
In an effort to ensure people with Parkinson’s disease receive the best care possible during a hospital stay, the National Parkinson Foundation has implemented the “Aware in Care Program.” To learn more about this program and request your own Aware in Care kit, you can visit http://www.parkinson.org/find-help/aware-in-care-kit. In brief, the kit includes a:
- Bag, large enough to store your medications
- Parkinson’s Disease ID Bracelet to notify emergency personnel of your condition in emergencies
- Medical Alert Card to place emergency contact information in your wallet
- Medication Form to keep record of your current medication list, including dosages and frequencies
- Hospital Action Plan containing information helpful to prepare for any hospital visit
- Parkinson’s Disease Fact Sheet and I Have Parkinson’s Reminder Slips containing information to place in your medical chart and share with your medical care team
Other important steps you can take to manage your health during a hospital stay include:
- Maintain a list of current medications, including dosages and frequencies
- Identify a family member or close friend as an advocate and educate them on what they can do to help you should you be unable to communicate in an emergency or medical situation
- Immediately contact your neurologist to notify them of your hospital admittance
- Communicate to your medical care team how they may contact your neurologist
- If the hospital pharmacy does not stock your medication, ask if you can use your medication from home. If you are told you cannot, ask your neurologist to write a letter or call the hospital.
- Inquire about new drugs your medical care team may want to administer during your hospital stay to identify any potential contraindications for persons with Parkinson’s Disease
Communication and education is key! Remain proactive by educating yourself and others on the importance of managing medication to prevent unnecessary declines in function during hospital stays.
Follow up with your Movement Disorder team or the National Parkinson’s Foundation if you have any questions or concerns.
Gerlach OHH, Broen MPG, van Domburg PHMF, Vermeij AJ, Weber WEJ. Deterioration of Parkinson’s disease during hospitalization: survey of 684 patients. BMC Neurology 2012; 12:13.
Institute for Safe Medication Practices. (2015). Delayed administration and contraindicated drugs place hospitalized Parkinson’s disease patients at risk. Retrieved from https://www.ismp.org/newsletters/acutecare/showarticle.aspx?id=103
Martinez-Ramirez D, Giugni JC, Little CS, Chapman JP, Ahmed B, Monari E, Wagle SA, Hess CW, Okun MS. PLoS One 2015; 10(4).
National Parkinson Foundation. (2016). Aware in Care Kit. Retrieved from http://www.parkinson.org/find-help/aware-in-care-kit
Parkinson’s Disease Foundation. (2012). Going to the hospital with Parkinson’s: How to be prepared. Retrieved from http://www.pdf.org/fall12_going_hospital