Hospitalization and Parkinson’s Disease

A trip to the hospital is rarely a welcome visit. Research has proven that people with Parkinson’s are hospitalized 50% more often than their peers who do not have Parkinson’s disease (PD) (National Parkinson Foundation, 2015). For people with PD, a trip to the hospital presents some extra challenges, including experiencing a worsening of symptoms, largely due to disruptions in behavior, sleep patterns, as well as medication timing. These disruptions can be further exacerbated by the lack of understanding of the disease by many allied health professionals. For example, hospital staff may not be aware that when symptoms are not properly managed, including taking medication on time, mental confusion or other side effects may occur, and in turn be mistaken for other ailments. Furthermore, some hospital pharmacies may not stock all Parkinson’s medications, leading to substitutions or missed dosages. All of these factors combined may lead to an unnecessarily lengthened hospital stay. This is why it is important that patients with PD bring their Parkinson’s medications to the hospital. At Parkinson Society British Columbia (PSBC), we aim to provide tools to people with Parkinson’s, and their loved ones, to make a hospital stay as comfortable and stress-free as possible.

When to go to the Hospital

Joseph H. Friedman of The American Parkinson Disease Association, Inc. writes that a trip to the Emergency Room is best suited for conditions such as infections, broken bones, pneumonia or surgery. He recommends against going to the hospital due to worsening Parkinson’s related symptoms because it is likely that the hospital staff will not be familiar with proper treatment of the disease. Often, if an Emergency Room (ER) doctor hears about an individual experiencing a neurological symptom, they may test for a stroke – leading to a CT scan and an unnecessary hospital stay. If you are experiencing non-threatening side effects from your medication, worsening of symptoms, including freezing or dyskinesia, it is best to consult with your neurologist or a physician who knows your history when you see changes beginning to occur (Friedman, 2007).

Medication on Time

If you do end up in the hospital, there are tools available to you through PSBC, and other like-minded organizations that can assist in alleviating complications during a hospital stay.

PSBC has a resource available called Timing is Everything. This is a folder available upon request, and includes a poster for nursing staff to place in your treatment file or on the bulletin board at the nurses’ station. It also includes 10 post-it notes with the message: I have Parkinson’s disease. Please remember that I need my Parkinson’s medication on time – every time (Parkinson Society British Columbia, 2015).

Aware in Care Kit

PSBC will be providing British Columbians with a new resource designed for hospital stays. The Society has partnered with the National Parkinson Foundation (NPF) to bring their Aware in Care kit to our province. The kit includes a bag that can fit Parkinson’s medications, a hospital action plan, Parkinson’s disease ID bracelet, medical alert card, a medication form, Parkinson’s disease Fact Sheet, I have Parkinson’s Reminder slips, as well as a magnet to help display your medication form at home or in the hospital.

Parkinson’s patient, Marty Gershe, describes how the reminder slip was particularly useful when he was recently brought to the ER at his local hospital. The slip says I have Parkinson’s and I must get my meds on time, every time. When ER staff saw this slip, they called Marty’s family physician, who confirmed this necessary information, helping to ensure the successful timing of Marty’s medication during his stay in the ER.

However, when he was moved to a different floor, Marty found he had to go through the process of informing the hospital staff about Parkinson’s once again. He refers to pages 10–12 of the Preparing for Parkinson’s booklet as particularly helpful. These pages emphasize the importance of being vocal, persistent and to assume everyone you meet has little to no experience with PD. When staff on the new floor didn’t understand the necessity of receiving his pills on time, Marty demanded to speak with the nursing manager as well as the head of pharmacy. With help from the Aware in Care kit, he was able to explain to them the nature of Parkinson’s and why he must stick to his existing medication schedule. He was successful in educating these staff members, and received his medications on time and every time during his visit. In Marty’s words, the kit “made me aware of what I should do, and it made a lot of health care professionals aware of what they should do for their patients” (National Parkinson Foundation, 2012).

Making your Needs Known

In addition to communicating the importance of medication timing, you should be prepared to advocate for yourself, as Marty did. If you experience trouble communicating, a carepartner or loved one should be prepared to help you if needed. Remember to talk to hospital staff about the following points:

• Physical and mental slowness can be associated with Parkinson’s, and may be even worse at the hospital than at home.
• Communication challenges may affect your ability to use an intercom, or communicate your needs. If this is the case, you may want to bring a friend or family member with you for conversations with staff.
• Dexterity issues may affect activities such as eating, hygiene and using the intercom or other tools at the hospital.
• Lack of facial expression is a PD symptom, and may further complicate communication between yourself and hospital staff.
• Let your nurses know if you have had Deep Brain Stimulation surgery (Parkinson Society British Columbia, 2010).

Conclusion

Preparing for your stay in a hospital, as well as asking for the help of friends and family members can help alleviate your concerns. Communication with the hospital staff is key – whether you communicate via the medication on time posters, post it notes, Aware in Care kit, your own voice, or through a friend or family member, it is absolutely vital that the hospital staff understand the effects of the break in your routine. Even though explaining this complex disease can be difficult, you must remember that ensuring you receive the proper treatment is in everyone’s best interests.

Sources

Friedman, Joseph H. (2007). Educational Supplement #16 When Should Parkinson’s Disease Patients Go To The Emergency Room? Retrieved August 17, 2016, from http://www.apdaparkinson.org/userfiles/files/16sup_Rev2007.pdf  

National Parkinson Foundation. (2012). Aware in Care: Real Stories. Retrieved August 19, 2016, from www.youtube.com/watch?v=ZYOJ4xAEw5w

National Parkinson Foundation. (2016). Aware in Care Kit. Retrieved August 17, 2016, from www.parkinson.org/find-help/aware-in-care-kit 

This content was published in the Fall 2016 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.