Parkinson's Disease For Dummies, 2nd Edition
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Having Parkinson’s disease (PD) makes for a challenging journey. Use the succinct information in this Cheat Sheet to recognize the important PD terms and acronyms, know where to look for related support, manage medications, and prepare emergency contact information.

Managing your medication routine

Here are some important tips for managing your medications:

  • Carry a complete list of current prescription (Rx) and over-the-counter (OTC) medications. Give a copy to your care partner, as well.
  • Tell all doctors of allergies or other problems.

Ask the doctor:

  • Name of medicine
  • Purpose
  • Dosing schedule (how much, how often)
  • How to take it and how long to take it
  • Side effects

Ask the pharmacist to:

  • Check your new Rx with your current Rx and OTC meds for possible interactions
  • Print the label in large print
  • Provide easy-to-open caps
  • Explain how to take the med

At home:

  • Add the new med to the list of meds that you carry with you
  • Read and file the informational printout that comes with your new med
  • Take the med exactly as prescribed

Words and acronyms to know

  • Akinesia: Inability to move spontaneously
  • Ataxia: Impaired balance and coordination
  • Bradykinesia: Slowed movement
  • Carbidopa/levodopa: Medication to relieve PD symptoms
  • Dopamine: Acts as one of the brain’s messengers to signal movement and maintain balance and coordination
  • Dyskinesia: Abnormal involuntary movements
  • PD: Parkinson’s disease
  • PWP: Person (or people) with Parkinson’s disease
  • T.R.A.P.: Acronym for four primary PD symptoms:
    • Tremor: Shaking of limb (usually hand) while at rest
    • Rigidity: Muscle stiffness and resistance to movement
    • Akinesia/bradykinesia: See earlier in this list
    • Postural instability: See ataxia earlier in this list

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Red-flag medications

The following four classes of medications may be incompatible with routine PD meds. Provide the following list to all medical professionals before they prescribe any new medicine (prescription or over-the-counter) and review any new medications with your PD doctor before you begin taking them.

  • Antinausea dopamine agonists
  • Gastrointestinal anticholinergics
  • Antipsychotics
  • Postoperative pain-management drugs (Demerol, in particular)

The Parkinson Foundation offers a wallet-sized medical alert card on its website. When you get to the web page, enter your name and email address, and click Submit.

You daily CHECK-IN

Here’s a quick and easy way to remind yourself that living well with PD is possible. Read this list once a day — twice if it’s a rough day:

  • Challenge: Acknowledge and face the facts.
  • Humor: Find and revel in the absurd.
  • Empowerment: Refuse to surrender your life and relationships to PD.
  • Collaboration: Team with your family, friends, and healthcare providers.
  • Knowledge: Know the difference between myth and fact, and keep up with the latest developments.
  • Integration: Treat the body, mind, and spirit.
  • Never: Never give up!

When you go to the hospital or ER

  • Have copies of the following information ready, and give these copies to the admissions office, the doctors, and the ER or floor staff:
    • Your PD doctor’s contact information, including office phone number, email address, and fax info
    • Your PD doctor’s written instructions for stopping and starting your PD meds during ER or hospital treatment
    • A list of all Rx and OTC medications you currently take
    • A list of the red-flag medications (see the section “Red-flag medications,” above)
  • Examine meds you’re given in the hospital. If you don’t recognize a medication, ask what it is, who prescribed it, and why you’re taking it.
  • Make sure your care partner has copies of all personal info, including insurance and copies of your advance directive and living will.
  • Have your care partner monitor all ER- or hospital-administered meds.
  • Before leaving the hospital, get a list of medications you’re now taking.
  • After you get home, contact your PD doctor to review the list of new meds.

Emergency contacts

Make multiple copies of this completed table to have with you at all times. Fill in the blanks to keep important phone numbers close at hand.

Emergency Contacts

Name Work Phone Personal Phone
Primary care partner
Secondary care partner
Neighbor
PD doctor
Primary doctor
Pharmacist N/A
Support group member/leader

 

About This Article

This article is from the book:

About the book authors:

Michele Tagliati, MD is Vice Chair of Neurology and Director of Movement Disorders at Cedars Sinai Medical Center. He researches Parkinson’s disease and other movement disorders.

Jo Horne, MA is an experienced author whose credits include Care giving: Helping an Aging Loved One and A Survival Guide for Family Caregivers.

Michele Tagliati, MD is Vice Chair of Neurology and Director of Movement Disorders at Cedars Sinai Medical Center. He researches Parkinson’s disease and other movement disorders.

Jo Horne, MA is an experienced author whose credits include Care giving: Helping an Aging Loved One and A Survival Guide for Family Caregivers.

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