The last couple of years have taught me a lot about Parkinson’s disease and hospitals. It’s a little strange to realize it, but the people who work in hospitals don’t really see much of Parkinson’s. It’s not a condition that usually requires hospitalization. On the other hand, it’s a disease that frequently causes other conditions that do land you in a hospital bed. Falls can break bones, particularly hip bones, and swallowing difficulties can create aspiration pneumonia. These, along with other infections and injuries, can result in you–the PD patient–finding yourself in a hospital ward focused on surgery, trauma, infectious disease, or respiratory conditions, and treated by a staff lacking specific knowledge for treating PD. Another complicating factor is that your PD is a very personalized condition. No two patients have the same medications requirements. Add to that the fact that your medication requirements will be changing because of the stress load of the current condition, and you realize that no one in the surgical team or the recovery room is going to become a PD expert in the time available. So unless you are able to bring your neurologist or movement disorders specialist with you to the hospital, you–and your care-partner–must learn to look out for yourselves.
I
went into the hospital several times over the last three years, first for
pneumonia, then for back surgery, then for an infected prostate. None of
the visits was directly the result of having Parkinson’s, but they were all
complicated by Parkinson’s, and each one of them could have been handled better
if the hospital staff were better informed about the specific needs of
Parkinson’s patients. Parkinson’s symptoms are often confusing to the
uninitiated and they vary so widely from patient to patient and hour to hour
that they can obscure the condition that the staff is trying to remedy. For example,
while I was in the hospital being treated for the prostate infection I got so
dyskinetic and chilled at the same time during a fever spike that the nursing
staff thought I was having a seizure. They were about to administer an
anti-seizure drug that might have interacted badly with my PD medications, but
fortunately I talked them out of it. They just don’t see enough of PD
patient’s to be aware of all contingencies.
The
answer to these problems is to prepare for the hospital visit in advance — even
if you don’t know it’s coming.
First, get a copy of the Aware in Care
kit from the National Parkinson’s Foundation. It’s free and a very
valuable tool for protecting yourself.
Then get an agreement from
the hospital’s admitting physician to allow you to manage your own PD
treatment, so they can manage your recovery. I put together a document that
outlined my requirements and requested their cooperation to help minimize my
hospital stay. Here is a PDF: PreAdmissionAgreement.
Getting
through pneumonia or back surgery is not an easy task, with or without PD, but
PD can complicate recovery in many different ways. Let’s not make it any
more difficult by going into it unprepared. We have to look out for
ourselves and be our own advocates. Don’t be afraid to negotiate for
control of your PD treatment before you are admitted.
John
Edna
and John Ball in front of John’s poster entitled, “Managing Parkinson’s
Symptoms While Being Hospitalized With non-PD Related Conditions”
- http://www.team-parkinson.org/weblogp=322#sthash.sfq8hBEC.dpuf
******************************************************************
I, ______________, live with Parkinson’s disease (PD).
It is a condition that is unique to me. My prescription medications
are essential to the management of my PD symptoms. The
medications I take are very specific, and cannot be substituted for
with similar drugs or generic look-alikes.
The timing and dosages of these medications is crucial. Any
deviations from my normal routine will exaggerate or exacerbate
my Parkinson’s symptoms and may confuse the treatment of my
current condition. Certain foods and timing of meals may interfere
with the efficacy of my PD medications.
I will manage my own PD medications, both dosage and timing.
I will bring my medications with me (the Pharmacist may wish to
inventory them.)
I will assist all hospital staff to coordinate my PD medications with
both current treatment and food schedules.
Patient ____________________________
Doctor ____________________________
Date_______________________________
****************************************************************
What’s in the Kit? FREE
http://www.parkinson.org/Improving-Care/Education/Education--For-Patients/Aware-in-Care
Each Aware in Care kit is filled with useful tools and information to help a person with Parkinson’s during the next hospital visit. Each kit includes:
 Aware in Care Kit Pack your bag with your Parkinson’s medication and materials below. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | |
 Hospital Action PlanRead about how to prepare for your next hospital visit—whether it is planned or an emergency. http://www.awareincare.org/wp-content/uploads/2012/12/Hospital-Action-Plan.pdf ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | |
 Parkinson’s Disease ID Bracelet
Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | |
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Medication Form Complete this form and keep copies in your kit for use at the hospital. If you download the form, you can fill it out on your computer before you print it out.
| |
Share the facts about Parkinson’s with hospital staff and ask that a copy be placed in your chart.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 | |
| I Have Parkinson’s Reminder Slips Share vital information about Parkinson’s disease with every member of your careteam in the hospital. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ | |
 | |
| Magnet Use this magnet to display a copy of your Medication Form in your hospital. http://www.awareincare.org/whats-in-the-kit/ | |
I
No comments:
Post a Comment