When we began organizing the Michigan Parkinson Foundation in 1982, a group of volunteers came to our offices at Harper Hospital to help with a mailing. Conversation was lively about medications each person was taking. Even today, after presentations about PD, the most frequent questions center on medication issues. We all know that careful balancing of medications and timing of when to take them can make a great difference in how people with PD feel and function.
The following article contains tips to help you to get the most out of your medication regimen to control Parkinson's disease symptoms, increase your ability to function and achieve the best quality of life possible.
Parkinson's disease is a chronic, progressive neurological disorder that currently cannot be cured. Many medical diseases cannot be cured (diabetes, hypertension, arthritis), but optimum medication management, psychosocial support and healthy living contribute to better outcomes. The objective of treatment is controlling the symptoms with medication. Other actions can be taken to improve functioning, such as exercise, stress management, occupational, physical and speech therapies. Key to quality of life is making sure a medication regimen is organized so that symptoms are controlled.
When does treatment with medications begin for early Parkinson's? What agents should be used first?
When you should start taking medications depends upon you as an individual and how much the symptoms interfere with your lifestyle.
Similar to the treatment of most diseases, the optimal drug therapy for Parkinson's disease is based on many factors and must be individualized. Medications are selected depending upon careful consideration of each person's responses, short and long-term side effects, possible drug interactions, presence of other medical and psychiatric conditions, as well as prescription insurance coverage and cost. If you have a Medicare D plan, whether or not it has a donut hole may make a big difference in the medicine you take. There has always been controversy in terms of when to start medications and which ones should be used initially. Discuss these options with your neurologist.
Does the amount or type of Parkinson medication you take mean your condition is more or less serious than someone else's?
No. Each person has different challenges with Parkinson's disease. Symptoms vary and so do treatments, the amount and types of medications and the individual's response to specific medications.
Tips in taking your medications:
Make sure that your doctor is aware of ALL the medications you take, including over the counter medication, herbals, vitamins, nutritional supplements, or any special dietary requirements. Carry a list of your medicines or the pill bottles themselves to your appointment and a list of questions to ask your doctor.
Ask questions, as given below, about your medications and how to take them - and make notes.
- What is the name of the medication, the dose and when do you take it (not just how many times a day)?
- How do you take your medication - with or without food?
- What can you expect from your medication? What kinds of symptom relief is to be expected and when - in one day, in a week? How long do you wait before you call your doctor to learn if your medication is working as expected? When you start some medications, it may take a while to build up to a "therapeutic dose." You may begin on a low dose and gradually build up to the level that adequately manages your symptoms.
- What happens if you miss a dose, or forget to take it on time? This greatly depends on the medication so don't guess what to do. If you miss a dose, it is not always good to take twice the amount the next time. Clarify this with your physician.
- What side effects are usual for each medication? If you have a side effect, what does it feel like? What should you do? When do you call the doctor?
- What will the side effect look like? Learn the terms used to describe side effects. Sinemet is one medication where "wearing off" may occur over time. At first, there is a beneficial effect (less symptoms of PD) for several hours (therapeutic effect). After a while, the positive effect of medication lasts for a shorter time period and you may become more rigid or have involuntary, abnormal or writhing movements (dyskinesia). This is called "on-off" phenomena. Other side effects may include dystonia (a type of cramping), nausea, vomiting, headaches, hallucinations, or loss of balance. Recording when these side effects occur in relation to when you take your medication will help your physician organize your medication regimen to reduce side effects and increase control.
- Is there anything you can do to avoid having a side effect, particularly if you are taking several medications for different conditions? How can your Parkinson's medications be coordinated with your other medications to maximize your treatment of each health condition?
Are there medicines you need to avoid when taking Parkinson's medications?
A variety of medications, most of which are compatible with other prescription and non-prescription drugs, are used to treat Parkinson's disease. However, there are a few drugs that can worsen PD symptoms and interfere with PD medications' actions, including some used for hallucinations, for lowering high blood pressure, and for nausea and vomiting. Sometimes problems will occur only with high doses. This should be discussed with your physician. It is important to realize there may be other possible medications you can take. Most medication interactions are reversible, so discuss the topic with your doctor. Check over-the-counter medications for cautions regarding their use when you have PD. Your pharmacist is also a good resource to consult.
The Michigan Parkinson Foundation's Professional Advisory Board has recently revised a Medication Interaction Card which you may wish to order to keep with you for reference. Contact MPF to obtain an updated card.
If you are experiencing problems, such as symptoms not relieved by the medication, or fluctuating symptoms, how can you effectively communicate these to your physician?
It is not unusual to experience symptoms at home and not during your appointment with your health care provider. Your physician may not actually see the difficulties you are having. It is a good idea to keep a detailed, written diary for a few days prior to your office visit, or when you are experiencing difficulty. This will provide a timeline for your doctor. Don't rely on your memory.
KEEP A DIARY AND INCLUDE:
- What are your symptoms? Describe them in detail. Explain to your health care provider what the symptoms mean to you, how they affect your quality of life and your functioning. Why is it important to reduce the effects of those particular symptoms? What is troublesome to one person is not to the next.
- When do your symptoms start? What time and under what circumstances (e.g. after meals, during certain activities)?
- How long do your symptoms last? Does anything relieve them?
- When do you take your medications (time, with or without food)?
- Are you experiencing any particular stress or anxiety, or are you sick?
Some people may have difficulty swallowing pills. There are several techniques that can help. Ask your physician or pharmacist what you can do.
Do not abruptly stop your medications without checking with your physician first. Stopping some medicines may result in withdrawal symptoms. If you are to be hospitalized, or undergoing dental or medical procedures, consult your physician about your medications. Do not assume you know what to do.
Note: MPF has a hospital form you can complete before your hospital visit to assist staff in ensuring your treatment regimen is carried out. Call for information.
What are some tips to remember when to take medications on schedule, since timing is very important in managing PD symptoms?
Over time, most people with PD have to take several medications at different times of the day. It is easy to forget when your next dose is. There are several methods to help you to remember to take your medications, such as:
Filling pill containers for each daily dose
Set alarm clock on watch or cell phone
Establish a routine (such as before or after meals)
What are reliable sources of information about the medication I am taking?
Obtain all the information you can about medications that are prescribed. Good sources of information are your physician, pharmacist, or health provider. Additional information can be obtained from websites:
www.drugs.com (costs, drug interactions)
www.medscape.com (free registration, drug interactions, patient information sheets)
www.Rxlist.com (patient comments)
www.webMD.com (patient comments)
What can I do if I have difficulty paying for my medications?
Speak with your neurologist. Some pharmaceutical companies have medication assistance programs. Your physician may be able to modify the medication regimen to make it more affordable.
The following websites provide access to various sources of low cost or free medication, including Pharmaceutical Assistance Programs:
www.needymeds.com (information about qualifying for assistance programs)
www.Pparx.org (Partnership for Prescription Assistance)
Rxassist.org (Patient Assistance Program Center)
The Michigan Parkinson Foundation has a small fund to assist people with financing their medications. In order to be eligible, consideration is given both to financial information and costs for healthcare for the entire family. Contact the MPF office at 248-433-1011 or 800-852-9781.
How should I dispose of unused or expired medications?
In order to keep people safer, protect young people from the harmful misuse of prescription drugs, understand the needs of seniors, and the environmental implications related to improper disposal of medication (e.g. flushing them down the sink or toilet), Operation Medicine Cabinet™ was launched in 2009 at the Oakland County Sheriff's Office, partnering with Home Instead Senior Care. There are now several prescription drop-off locations in Oakland County. Check for similar programs in your county. For information, visit www.operationmedicinecabinetmi.com.
Caution: There are many advertisements for unproven therapies.
Often, people end up paying lots of money for treatments that do not work. Discuss these therapies with your neurologist first. Also, check the company out with the Better Business Bureau, or www.quackwatch.com.