The National Parkinson Foundation (NPF) has created a program
called Aware in Care (http://www.awareincare.org/pd-and-hospitalization/)
that provides a small kit containing items to help PD patients while
hospitalized. In addition, there is guidance
on how to best help educate healthcare professionals on the disease and a
summary of 10 steps to optimize healthcare.
Advice is also presented for
hospitalized patients with special issues related to PD, such as DBS placements
or acute balance issues.
Patients should inform every doctor, nurse, or healthcare
professional with whom they come in contact that their medications must be taken
at their regularly scheduled times. This
is important because most hospitals do not allow patients to control their own
medications. Emergencies, shift changes,
and other care interruptions may delay medication regimens. Missing a scheduled dose of medications can
affect comfort, dexterity, gait, and other motor functions. In rare instances, care disruptions can be grave
or even life-threatening.
What the Aware in Care
program strives to do is educate PD patients on issues related to
hospitalization, so in turn they may advocate for themselves and ensure their
needs are met by hospital staff. Most
health care professionals are not movement disorder specialists, and many do
not understand the specific needs and issues surrounding PD, which makes
advocacy on the part of the patient of the utmost importance.
If you are a person with PD or know someone who is, please
consider ordering an Aware in Care
kit from the NPF. They are provided free
of charge, and with a little effort can be stocked and ready for any eventuality
that leads to a hospital stay.
NPF Helpline and
Telephone Order Number for Aware in Care Kit
1.800.4PD.INFO
(473-4636)
References
1. Low V, Ben-Shlomo Y, Coward E, et al. Measuring the
burden and mortality of hospitalisation in Parkinson's disease: A
cross-sectional analysis of the English Hospital Episodes Statistics database
2009-2013. Parkinsonism Relat Disord. 2015; epub ahead of print.
2. Aminoff MJ, Christine CW, Friedman JH, et al. Management
of the hospitalized patient with Parkinson's disease: current state of the
field and need for guidelines. Parkinsonism Relat Disord. 2011;17(3):139-45.