By Kate Kelsall, MSW, blogger at Shake, Rattle and Roll: An Insider’s View of Parkinson’s disease and DBS
The challenges involved in hospitalization of the person with Parkinson’s Disease (PD) can be overwhelming for the patient and family. These problems may include medication mismanagement and the lack of training of the hospital staff about how to care for persons with PD. Typically, a person with Parkinson’s sees a neurologist for diagnosis and treatment and many people go for years without a proper diagnosis. The neurologist deals with the neurolgocial condition, while the primary care provider deals with everything else. A patient, or those who act as patient advocates, attempt to keep the neurologist and the primary care provider (PCP) informed about the medical condition of the patient and also try to keep the doctor communicating.
Many of the difficulties that you will encounter as a person with Parkinson’s while in the hospital relate to medications. Some patients take PD meds around the clock from every two hours to every five hours. The PD meds help the patient manage the symptoms of tremor, bradykinesia, stiffness, and rigidity.
The problems include the following:
- Wrong medications being dispensed
- Correct medications not being dispensed on a timely basis or not at all
- Patient’s medication is not stocked by the hospital.
Provide a typed list of patient’s medications and make sure it is written into the doctor’s orders. List should include:
–Name of medication including whether it is standard or long-acting form (CR)
–Strength of dosage
–Specific times that medication should be administered (specify exact times such as 7 AM, 11 AM, 3 PM, 7 PM instead of four times a day)
–Whether medication should be administered with or without food, before, during or after meals
–Whether the medication can be crushed
In case the patient’s medication is not stocked in the hospital, patient may want to bring his/her own medication from home in its original prescription bottles and give to nursing staff to administer.
Problem: Some PD patients find their PD symptoms worsen while in the hospital.
One possible cause is the introduction of new medications in the hospital and how they interact with PD medications and anesthesia.
Solutions: Become an informed patient. Develop a list of medications that should not be administered with patient’s current PD medications. For example, certain drugs block dopamine receptors and worsen PD symptoms.
Find out if patient’s PD meds need to be temporarily stopped before surgery.
It is often difficult for the patient to act in the capacity as his own advocate. Get a Patient Advocate involved. Arrange for someone (or several people doing shifts) to be with the patient round the clock or at least 16 hours/day, as an advocate. The advocate’s role is to monitor the patient’s care, including the medication, to ask questions and act as spokesperson and educate the staff about PD.
Problem: Often the medical staff doesn’t have the experience and training to care for PD patients. There are many family members of PD patients who attend support groups and conferences on PD resulting in some of the family members being better informed about PD than some who work in a hospital setting. In addition, the family members live with the patient and attend the patient’s doctor appointments so they have become educated on the health care of their own family member, but not educated on the needs of all patients.
Solution: Educate the hospital staff. Order the free Aware and Care Kit from the National Parkinson’s Foundation. The free Aware in Care Kit can be requested at www.awareincare.org or by calling 1-800-4PD-INFO (473-4636). The kit is large enough to fit the Parkinson’s medication and provides tools and information to share with hospital staff during a planned or emergency hospital stay. The kit includes the following:
Hospital Action Plan
Read about how to prepare for your next hospital visit—whether it is planned or an emergency.
Parkinson’s Disease ID Bracelet
Wear your bracelet at all times in case you are in an emergency situation and cannot communicate.
Medical Alert Card
Fill in your card with emergency contact information and place in your wallet.
Complete this form and keep copies in your kit for use at the hospital.
Parkinson’s Disease Fact Sheet
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 care team in the hospital.
Kate Kelsall blogs about Parkinson’s disease on Shake, Rattle and Roll: An Insider’s View of Parkinson’s and DBS. She was named a top health blogger by Wellsphere.