Both emergency room and hospital visits may be necessary for a person’s with Parkinson’s. Most often, these visits are not a result of Parkinson’s but of medical problems that arise naturally in both the PD and non-PD population. There are ways to prepare for these visits in advance which can make your experience less daunting and less distressing.
EMERGENCY DEPARTMENT/ER VISITS:
Cardinal Rule of Parkinsonians
Don’t go to the emergency room because your Parkinson’s symptoms have gotten worse without first talking with your doctor.
There are plenty of reasons as to why you would go to the ER. Maybe you have an infection that’s making your Parkinson’s worse, you fall and may have fractured a bone, etc. But, you should not go there as a first resort when you are experiencing an on-off period or freezing episode.
Parkinson’s is not an “urgent” condition. Emergency physicians know less about Parkinson’s than they do about seizures, broken bones, or concussions. Patients who do go because of a change in symptoms often experience long waits, undergo a variety of tests and scans, and do not walk away armed with more information or feeling any better than when they first arrived.
If your hospitalization is planned, try to use a hospital where your neurologist has privelages. This will help ensure continuity of care and give you an additional advocate for your care.
Make a list of all medications, including dosage, timing, schedule and any other important information. BRING 2 COPIES of the list with you on your visit, one for the doctor or nurse, and one that can be placed with your medical chart.
Understand that medication is not normally given on a very strict schedule in the hospital, so it will be necessary to speak with the doctor or nurse to explain how critical timing is for your Parkinson’s medications. If you take some medication on an as needed basis, you’ll have to explain that as well.
Note that experimental medications (i.e., medications received through clinical trials) are not normally held in hospital pharmacies, so it will be necessary to bring the medicine in the original bottle with instructions.
Most nurses will be unfamiliar with on-off periods or dyskinesia. They may be confused as to why you need help getting dressed or getting to the bathroom, or be unable to move at all one night, but are fine the next. They may also be confused by dyskinesia or interpret it as an indication of some other condition.
You can bring information, like booklets or pamphlets, to the hospital to share with the nurses, if you think it would be helpful.
Disorientation & Other Medications
Oftentimes, people will lose their bearings when they are in a hospital setting. This could be a result of the condition that brought them there, the lights, noise, unfamiliar setting or anesthesia, if you underwent surgery.
Note that further testing (i.e., MRI, CAT scan, EEG) is rarely indicated.
Antipsychotic medication and other medications to control delirium or behavior changes should be used with caution as some may worsen Parkinson’s symptoms.
Bring with you the list of medications to avoid in people with Parkinson’s.
It is important for you to keep moving while in the hospital (if possible). This will help your muscles to stay loose and strong, so you’re prepared to take on the world once you leave the hospital.
Physical therapy or inpatient rehabilitation may be beneficial depending upon the condition that brought you into the hospital and your length of stay. Ask your doctor or nurse if you think this would be right for you.