Parkinson’s Disease: What Caregivers Long for Nurses to KnowThe World Parkinson’s Congress held in September 2016 featured 4700 people from 67 countries. Researchers, movement disorder specialists, nurses, physical therapist, social workers, and of course the people who face Parkinson’s challenges every day participated. Many people with Parkinson’s and their care partners sat side by side with professionals, sharing many facets of a complex neurodegenerative disease.

Lack of Initiative

Hope was the prevailing message. From new research providing details of working toward a cure, or medications aimed at making symptoms less troublesome, the message proclaimed that hope is achievable. 

However, there was one consistent message I had heard more times than I could count and wished it was never true. When the topic of nurses was spoken, care partners would cringe with stories demonstrating the same dilemma. Nurses, in general, lack an understanding of the needs Parkinson’s patients. The whole truth was more disturbing. There is a lack of initiative on the part of many nurses to try to understand how their lack of knowledge adversely affects patients and healthcare in general.

Story after story, caregivers talked about the need to be sure their loved one received their medications on time. But it did not happen. The consistent frustration of the care partners was the lack of effort demonstrated by nurses. Not only did nurses show the lack of knowledge regarding medications, there was generally no effort to understand the importance of “on time.”

Different From One To The Other

What nurses need to know is that the medication for treating Parkinson’s symptoms is completely unique from one patient to the next. The goal of treatment is to provide each individual with as much “on time” as possible. In other words, the patient needs to have as few symptoms as possible.

On any given day, a patient with Parkinson’s has times when they are “off.” Their symptoms prohibit their basic activities. During “on time,” they can take of themselves at a higher level than during “off time.” 

Only when medications are administered timely and without protein, can the medication effectively treat the Parkinson’s symptoms.

Treating the Patient Not The Disease

Why is it that there is a noticeable gap between basic knowledge of Parkinson’s and nurses understanding of their patient’s needs? Since no one is admitted due to Parkinson’s or comes to the emergency room due to Parkinson’s symptoms, the primary medical reason why a nurse is caring for a Parkinson’s patient is simply not Parkinson’s Disease.

Secondary conditions are not as likely to garner as much attentiveness in an acute or urgent situation. Also, nurses who are in technical fields of care, are more likely to utilize educational priorities for themselves to be acute or traumatic conditions.

However, if a patient with Parkinson’s receives their medication timely, they will be capable of doing more for themselves. Translation, less nursing time is required during “on time.” Further, if someone is neglected in regard to their Parkinson’s symptoms, lengthier stays may result. This translates into wasted healthcare costs, a genuine concern in today’s world.

Nurses, please join me in echoing the stories of hope for Parkinson’s patients. They depend on us. Nurses can choose to be the difference in an optimal acute stay or emergency treatment for someone with Parkinson’s.  Listen to the patient and caregiver. It could save you time and effort. Healthcare costs are everyone’s business. But more than anything, choose to be an advocate of hope for your patient.