Parkinsonian Links

About Hospitals

Parkinson's Disease is not what you would expect to be sent to a hospital to recover from, unlike some diseases, but it is still important to understand the relationships between you as a Parkinsonian and the hospitals you might go to. Four areas come to mind:

  1. You go to a hospital because they have a center with sophisticated equipment and personnel for in-depth testing.
  2. You go to the hospital for an operation related to your Parkinson's
  3. You go to the hospital on an unscheduled emergency basis.
  4. You go to the hospital for a scheduled operation, unrelated to your Parkinson's


In the first two cases, you would normally expect that they have worked with Parkinsonian patients in the past and that they know how to handle you and what precautions need to be taken. Caution is still advised on your part, because if something is done wrong, it is still your body that hurts or suffers or even dies. And if you could have said or done something to prevent the wrong thing from happening, it's your body that would have been better off for it.

In the third case much will depend on whether they can identify you as a Parkinson's patient and whether or not they know what to do after they have identified that fact. A knowledgeable person who could act as your advocate would be best. A card in your pocket or pocket book outlining what you want an emergency room employee to know could prove to be a lifesaver. Support groups often make such cards available to their members.

The following article suggests how you might handle hospitalization, especially for the fourth case.

When a Parkinson's Patient is Hospitalized.

At the Doctor's Office:

In the planning stage at the doctor's office, discuss any fears, questions, or uneasiness you may have about hospitalization. Make out a list on paper and have it with you. It's also a good idea to have a spouse or companion accompany the patient to make sure all details are remembered.

If Surgery is being considered, ask:

  • Will the benefits outweigh the risks?
  • What long-term effects can be expected?
  • Are there any valuable alternatives?
  • What type of anesthesia is required and will it interact with or affect and other health problems?
  • Will necessary medication be allowed through surgery?
  • What is the expected length of hospitalization, what will be the overall cost for the surgery, and what percent of these costs will be covered by insurance?
  • What is the expected full recovery period and how soon will driving be allowed?

It is wise to get a second opinion about surgery and your questions from another doctor.

When planning for hospitalization

  • If the patient wants a private room, arrange for it beforehand,
  • If the patient chooses to administer his/her own Parkinson's medication, some doctors allow this. (Bring drugs from home, as hospital pharmacies are very expensive.)
  • If the patient does not want an egg crate mattress, notify the hospital in advance. (These are hard to maneuver on.)

Be sure:

  • If in for surgery insist that the surgeons, neurologist, and anesthesiologist, are in communication about the patient's SPSD medications. Talk to the anesthesiologist personally well before surgery about any adverse drug interactions. Arrange for medication by tube during surgery if needed,
  • If the patient is taking selegiline (Eldepryl), which is usually stopped temporarily before surgery, make sure that the doctor sets a surgery date that allows adequate time to discontinue the use of this drug.
  • Ask the doctor to send the patient's PD drug regimen and any orders for self-administration and the admitting orders to the hospital in advance of admission. Also request that the doctor set an admitting time at a low work volume period (not at shift change) to be sure that the admitting personnel not be rushed.

At time of admission to the hospital

It is always wise to have someone accompany the patient during admission. Have duplicate lists with necessary facts such as other health disorders, immunization dates, allergies, and contraindicated drugs, special dietary needs, medical insurance information, daily medication dosage, and time schedule. Make one list for the admitting nurse and one for the floor nurse to avoid the time and stress of repeating information.

Parkinson Society Canada has published a brochure entitled What You Need to Know About Parkinson's: Information for Health Care Staff at Long Term Care Facilities. It is also applicable to hospitals. It would not hurt to bring copies to the hospital for medical and nursing staff alike. It is also available in French..

In the hospital:

  • Let the staff know that the patient doesn't want to burden them, but may need help at times. Gradually explain to nurses the things that give the patient problems, such as eating, opening covers on food, the "on-off" syndrome and how it might affect physical therapy schedule, the necessity for strict medication timing, low voice volume for the intercom, turning in bed, bathing, and getting out of bed and walking unassisted.
  • Be as pleasant and helpful as possible.
  • Do not hesitate to have a note on patient's door limiting visitors.

Before going home:

Discuss home care and a rehabilitation program with the social services director.

?excerpted from a Parkinson's Education Program USA publication.

Return to top of Links Page

Return to Links Page, "Hospitals"

E-mail me with comments at epr@airmail.net.

It is a sad fact that every web page like this must add "Disclaimers apply."
Revised 17 January, 2004