Parkinson’s Disease For Dummies
Living with Parkinson’s disease can be a challenge. You have to manage the medications you take, understand what you should avoid, and be familiar with a range of new terms and acronyms. It's also a good idea to keep a list of emergency contacts at hand and be as prepared as you can be for a trip to the ER. But Parkinson's treatment doesn't have to be all bad news. You can find online help from organizations devoted to aiding people with Parkinson's and working to find a cure. And you can benefit from keeping yourself on an even keel with at daily CHECK-IN.
How to Manage Your Medications for Parkinson’s Disease
If you have Parkinson’s disease, you most likely manage some symptoms with medication. Managing your Parkinson's medications can be a challenge in itself, but the tips in the following list can help you stay on top of things:
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
Dosing schedule (how much, how often)
How to take and how long to take
Ask the pharmacist to:
Check new Rx with your current Rx and OTC meds for possible interaction
Print label in large print
Provide easy-to-open cap
Explain how to take med
Add new med to list of meds you carry with you
Read and file information print-out
Take med exactly as prescribed
Parkinson’s Disease Words and Acronyms
Every condition, profession, sport, and what-have-you has its own vocabulary and its own acronyms. Parkinson’s disease (PD) is no different. The following list contains terms and abbreviations that are part of the Parkinson’s world:
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 above
Postural instability: See ataxia above
Medications that are Incompatible with Medications for Parkinson’s Disease
The following classes of medications may be incompatible with routine medications you take to manage Parkinson’s disease. 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 neurologist before you begin taking them:
Antinausea dopamine agonists
Postoperative pain-management drugs (Demerol in particular)
Contact the National Parkinson Foundation (or call toll-free 1-800-327-4545) for a wallet-sized card that lists drugs that may be contraindicated.
How to Prepare to Go to the Hospital or ER When You Have Parkinson’s Disease
Having Parkinson’s disease (PD) certainly doesn’t make you immune to accidents and ailments that can land you in a hospital — it may make a trip to the ER more likely, in fact. To make sure that a surprise trip to the emergency room (is there any other kind?) or a planned stay in the hospital doesn’t leave you worse off than before you went in, use the following tips:
Have copies of the following information ready; give them to the Admissions office, the doctors, and ER or floor staff:
Your neurologist’s contact information — phone, pager, e-mail, and fax info
Your doctor’s written instructions for stopping and starting your PD meds during ER or hospital treatment
A list of all prescription and over-ther-counter medications you currently take
A list of the red-flag medications that interact badly with PD meds, including antinausea dopamine agonists, gastrointestinal anticholinergics, antipsychotics, and postoperative pain-management drugs — Demerol in particular
Examine meds you are given in the hospital. If you don’t recognize a med, 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 info 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’re home, contact your neurologist to review the list.
Emergency Contacts to Keep on Hand If You Have Parkinson’s Disease
It makes sense for everyone to carry a list of emergency contacts, but if you have Parkinson’s disease, carrying such a list is essential. Print out a list of contact information — home, work, and cell numbers — for the following people and carry it in a prominent place in your wallet or bag. Posting the list in your home isn’t a bad idea, either.
|Primary care partner||Primary doctor|
|Secondary care partner||Neurologist|
|Support group member/leader|
Useful Web Sites about Parkinson’s Disease
If you’re dealing with Parkinson’s disease, don’t ignore the benefits of the Internet. The Web sites in the following list can provide you and your care providers with information, support, and a variety of resources. Add these Parkinson's Web sites to your bookmark list:
Your Daily Parkinson’s Disease CHECK-IN
If you have Parkinson’s disease (PD), you know that few things are quick and easy — except the following list that helps you 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 give up!