Enclosed you will find a copy of Critical Information for Caring for the Parkinson’s Patient, a
document that was recently developed by Parkinson's Resources of Oregon and the
Parkinson Center of Oregon at Oregon Health Sciences University to assist patients and
medical professionals in providing optimal care for those with Parkinson’s disease.
As you may know, Parkinson’s disease symptoms and treatment regimens are often
complex, requiring strict adherence to medication and dietary schedules. It is hoped that
this document will serve as a useful tool to help you communicate this importance with care
professionals.
While not legally binding, Critical Information for Caring for the Parkinson’s Patient provides
you with an opportunity to express your unique needs/symptoms and also can serve as an
education tool for care staff you may interact with. Because symptoms and medication
regimens frequently change, it will be important that you periodically review and update this
information.
Should you (or your loved one) require additional care and support either at home or in an
institutional setting, we urge you to ask that this document be included with the patient’s
Care Plan as well as attached to medical records. You may need to make several copies
so that all relevant parties have ready access to the information.
If you have additional questions regarding the use of this document, please contact either
of us at the number(s) listed below.
Sincerely,
Holly Chaimov Lisa Mann
Holly Chaimov, Director Lisa Mann, Nurse & Education Coordinator
Parkinson's Resources of Oregon Parkinson Center of Oregon
(800) 426-6806 (503) 494-5620
PARKINSON CENTER
OF OREGON
National Parkinson Foundation Center of Excellence



Patient Name: __________________________ Date Updated:________________
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CRITICAL INFORMATION FOR CARING
FOR THE PARKINSON’S PATIENT
Name: DOB:
Family Contact: Phone#:
I have Parkinson’s disease (PD) which doctors diagnosed in _________ (year).
It is important thatthose who care for me have a basic understanding of the disease so that my symptoms can be accurately recognized and treated.

WHAT IS PARKINSON’S DISEASE?
Parkinson’s disease is a slowly progressive disorder, generally associated with trembling of the limbs,stiffness, rigidity of the muscles and slowness of movement. An accelerated loss of the brain chemical dopamine (a neurotransmitter which activates the message system from the brain to control movements) causes this. To date there is no known cause and no cure.
Researchers believe that both environmental and genetic factors may play a role in the development of the disease.

CHARACTERISTICS OF PARKINSON’S DISEASE

I may personally exhibit those symptoms which have been checked below.
□ Rigidity □ Tremor
□ Bradykinesia (slowness of movement) □ Difficulty with balance
□ Depression □ Sleep disturbances
□ Dementia □ “Restless legs”
□ Speech problems (vocal softness, □ “Masked face” showing little or no
slurred and indistinct words) emotion with a staring expression
□ Drooling □ Difficulty swallowing
□ Constipation □ Difficulty in voiding
□ Dizziness □ Stooped posture
□ Swollen feet □ Excessive sweating
□ “On-off” symptoms (able to perform □ Difficulty with walking (a decrease in
one minute, but not the next; this may be the natural arm swing, short shuffling
related to timing of medications) steps, difficulty turning, abrupt “freezing” spells)
□ □
□ □
□ I have a DBS (deep brain stimulation) implant. Questions should be directed to my DBS nurse
at or to Medtronic at 1-800-328-0810.
WARNING: Diathermy (therapy which uses high-frequency current) is completely contraindicated;
MRIs can only be done following strict guidelines.
PARKINSON CENTER OF OREGON
National Parkinson Foundation Center of Excellence

Patient Name: __________________________ Date Updated:________________
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COMPLICATING FACTORS

Factors that may worsen my condition are:
�� not getting medications (particularly Sinemet®, Carbidopa/Levodopa) on time
�� taking Sinemet® with protein or iron
�� taking Sinemet® too soon or too late (more than 15 minutes) from the prescribed time
�� stress, anxiety, lack of exercise and/or the need for rest
�� being prescribed incompatible medications (see below)
MY MEDICATION & DIETARY SCHEDULE

I must be given my medication(s) promptly at the times specified.
If this is not possible, consult my admitting physician for authorization to administer my own medication, or alternatively, to have it administered by my caregiver.
The timing of my medication is very important to help minimize my
symptoms and “off” times.
For example, my Sinemet must be taken 30-60 minutes before or two
hours after my meals, because protein prevents the maximum amount of dopamine from reaching the brain.
If I am not able to swallow, my medications may need to be crushed and administered by a
stomach tube (exception: Sinemet CR must not be crushed) or the dissolvable form—

Parcopa®—should be ordered.
If I am on Sinemet and Intravenous Protein (TPA) is proposed,
my neurologist must first be contacted because the dosage may need to be adjusted.
Medication Dose #_ of pills
each dose. Times taken Why I take this medication…

Medications commonly used to treat PD:
DOPAMINE
• Sinemet®(carbidopa/levadopa)
• Parcopa®
MAO-B INHIBITORS
• Eldepryl® (selegiline)
• Azilect® (rasagiline)
DOPAMINE AGONISTS
• Requip ® (ropinirole)
• Mirapex ® (pramipexole)
• Apokyn® (apomorphine)
• Neupro® (rotigotine)
• Permax® (pergolide)
• Parlodel® (bromocriptine)
COM-T INHIBITORS
• Comtan® (entacapone)
• Tasmar® (tolcapone)
• Stalevo® (Comtan + Sinemet)
ANTI-VIRAL
• Symmetrel ® (amantadine)

NUTRITION CONSULTATION
If this hospital or facility has a nutritionist, it would be helpful for me or my home caregiver to speak directly with him/her. The relationship of protein consumption and medication timing greatly affects my condition.
Patient Name: __________________________ Date Updated:________________
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MEDICATION SIDE EFFECTS

Parkinson’s medications all have very similar side effects: nausea, dizziness, mental changes,
hallucinations, confusion, involuntary movements, loss of appetite, dryness of mouth, lowered blood pressure. If these should occur or other medication issues arise, please contact my neurologist’s nurse at .
Medication changes are often necessary with Parkinson’s disease and everyone responds differently to the medications. The doctor will need to know what has changed, how and when my medications work (reduced symptoms), and the timing of when they do not work.
A medication diary noting changes may be helpful.

IMPORTANT MEDICATION INFORMATION

Medication concerns are not limited to the notes below; however, these are some of the more
common medication reactions that some healthcare providers are not aware of.
• MAO-B Inhibitors (selegeline, rasagiline): DEMEROL MUST NEVER BE GIVEN WITH
MAO-B inhibitors! To be safe, MAO-B inhibitors should be stopped for two weeks prior to
surgery. It is imperative that the attending physicians verify and stipulate this interval.
• COM-T Inhibitors (Stalevo/Comtan/Tasmar): These medications can cause severe
diarrhea which will resolve once the medication is changed. Contact the prescribing
physician for directions.
• Dopamine Agonists (see list on page 2): Watch for obsessive behavior, hallucinations, and
psychosis. Contact the prescribing physician for directions.
• Atypical Anti-psychotics (Seroquel / Clozapine): These drugs are utilized to help control
behavioral problems in people with PD, but only after careful consideration by the treating
neurologist, family and patient.
• Narcotics: Although pain control is the top priority, be aware that narcotics can more easily
precipitate confusion in people with Parkinson’s disease.

PD & SURGERY:

1. See note above regarding stopping Eldepryl/selegiline two weeks prior to surgery.
2. There should be no reason to skip PD medications prior to surgery even if directions are NPO
(nothing by mouth) for 6-10 hours prior to surgery. Discuss with surgeon or anesthesiologist.
3. Restart PD medications (except eldepryl) as soon as possible after surgery even if NPO;
discuss with surgeon.

4. Be aware that PD patients have a lower threshold response to analgesics (sedation/pain
medications) and could experience hallucinations; however, this is not a contraindication
(reason to avoid) their administration.
Other medications which may worsen Parkinsonian symptoms and should not, in general, be
prescribed for a person with PD include:
NEUROLEPTICS GI / ANTI-NAUSEA RX
Haloperidol (Haldol®) metoclopramide (Reglan®)
Chlorpromazine (Thorazine®) prochlorperazine (Compazine®)
Thioridazine (Mellaril®) trimethobenzamide (Tigan®)
Molindone (Moban®)
Perphenazine (Trilafon®)
Perpenazine and amitriptyline (Triavil®)
Thiothixene (Navane®)
Flufenzaine (Prolixin®)

Patient Name: __________________________ Date Updated:________________
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Additional concerns / comments / other conditions for which I am being treated:

NEUROLOGICAL ADVISORY

I feel that having ready access to a neurologist/doctor who is familiar with my condition is very
important.
My neurologist is ________________________________Phone # __________________
My family doctor is ______________________________Phone# ___________________
My home caregiver is _____________________________Phone#_______________ ____
Additional medical support
____________________________________Phone#________ __________
____________________________________Phone#________ __________

Optional: I concur with the above considerations:
Physician’s Signature
Please Note: This guide is not intended to replace the orders of my admitting physician (s). I have
chosen to use this guide to encourage communication among all my physicians, nursing staff and
myself.
□ I have an Advanced Directive. □ I have a Healthcare Power of Attorney.


* * * * * * * * *
Developed by Parkinson’s Resources of Oregon and OHSU’s Parkinson Center of Oregon.
* Drawing from the experiences of those who have contributed to this publication, we recommend
that, if hospitalized, you or your caregiver have sufficient copies of this leaflet to distribute: one to
your admitting physician, one for the nurse on each shift (4), one for the attending surgeon if
surgery is to be done, and one for the anesthesiologist.

Parkinson’s Resources of Oregon (PRO)
2145 N.W. Overton Street
Portland, OR 97210
503-413-7717
800-426-6806
www.parkinsonsresources.org
PRO provides support and educational resources
for people and families dealing with Parkinson's
disease.
Parkinson Center of Oregon (PCO)
Oregon Health & Sciences University
3181 S.W. Sam Jackson Park Rd, OP-32
Portland, OR 97239
503-494-7230
www.ohsu.edu/pco
The PCO is a national leader in medical
care, research, and education for people and
families living with Parkinson’s.

Tina, THANK YOU for posting this information--Jaye and mamafigure, perhaps this could assist you both with your upcoming surgeries--make several copies for every department with which you come in contact.
madelyn

Great Information! Now, how does one get anyone as busy as they are to sit down and read it? I would suggest some severe editing and graphic work to make it easy to read and to gather the salient points at a glance. Not that I am volunteering, mind you. Heck, I even would volunteer to edit, if someone wanted to work on layout and graphics. Seriously, if one could get the staffs to read this, we could eliminate a large part of the "horror stories" that we have read about lately. Maybe laminate copies to go into the break rooms - that is, if the break rooms haven't been turned into labs or patient rooms because there is no money to expand.