Because there is no objective test or marker for Parkinson’s disease, the physician looking after the management of your illness relies heavily on the information you provide. This is different than other diseases such as high blood pressure or diabetes where blood tests or studies can objectively let the doctor know how well your disease is under control. Knowing what information to record and convey is an extremely important part of being an active participant in your disease management and can ultimately influence your quality of life.
Here are ten key pieces of information that you should let your Parkinson’s physician know about.
(1) Your motor symptoms. Of course we now know that Parkinson’s disease is much more than a movement disorder. But the cardinal symptoms of tremor, bradykinesia (slowness of movement), stiffness and postural instability are still considered hallmark indicators of the disease and it is these manifestations that the medications are trying to control. So it is important to note when you tend to experience these symptoms, how severe they are, how long they last and most importantly, when they occur in relation to your medications. Given the complexity of the information, it is best to record this information in a symptom diary for a number of days prior to your appointment. Once documented, certain trends may emerge.
(2) Your nonmotor symptoms.Although less well known than the motor manifestations of Parkinson’s, the nonmotor symptoms that patients experience can actually have a more profound effect on quality of life. Parkinson’s affects many bodily systems resulting in a variety of issues including mood disorders (depression, anxiety), visual disturbances, difficulty swallowing, constipation, sleep disorders, skin changes, urinary incontinence, sexual dysfunction etc. It is important to become educated about all these potential problems so that if they occur, you can recognize them as being part of your Parkinson’s diagnosis and not an independent problem.
(3) Your medication schedule. It is best to come with a written schedule of your medication regimen. The name of the medication, dosage, number of pills per dose and number of doses per day and how far apart. It is also a good idea to bring your pills with you in their original bottles. This prevents any miscommunication if you need to identify a specific medication that you are concerned about or if you require any of them to be renewed.
(4) Your on / off periods. “Off” periods refer to when your Parkinson’s medications are not working and your symptoms are not controlled adequately whereas “on” periods mark those times that symptoms are optimally controlled. The goal of any medication regimen is to optimize the “on” times and minimize the amount of time a patient spends in the “off” periods. If you keep a symptoms diary, trends in how well your symptoms are controlled throughout the day will be easier to see.
(5) Any other medications. You must let the physician looking after your Parkinson’s disease know if you are taking any other prescribed or over-the-counter medication for any other reason. There are potential drug-drug interactions for example in someone who is on a MAO-B inhibitor such as selegeline (Azilect) and is given a common pain medication, Demerol or a common cough suppressant available on the pharmacy shelf, dextromethorphan. Or some drugs may worsen the symptoms of Parkinson’s disease such as Haldol (treats psychosis) or specific medications to treat nausea and vomiting such as chlorpromazine.
(6) Any major life changes. Major life changes such as divorce, job issues, financial problems can impact the symptoms of your disease through added stress and changes in your level of self-care. For example changes in insurance may impact the medications you can receive or moving on after a divorce may be causing stress that is worsening your symptoms. Your physician should be made aware of these issues so that they can take them into consideration when evaluating the progress of your disease and developing a management plan.
(7) Communicate your quality of life goals.Only you know what your quality of life goals are and what is important to you is unique to your life situation. What might represent a good quality of life for one person will likely differ from another and depends on a number of variables – age, stage of life, responsibilities, aspirations, capabilities and so forth. Regardless of what goals are set, it is imperative to try and reach those goals in order to maintain an individual’s emotional, physical and spiritual well-being. And because the definition of quality of life is so individualized, there must be clear communication between you and your physician so that those symptoms that are limiting your well-being, can be dealt with.
(8) Your care partner’s input. Open and honest communication with your physician is of course vital to your Parkinson’s management but sometimes our perspective on our health may differ from reality. Perhaps our care partners notice symptoms worsening whereas we don’t because we have become accustomed to the decline. Or as in the case of cognitive problems, we may not notice at all. Sometimes with symptoms such as REM Sleep Behavior Disorder, the care partner in advance of the patient often first observes symptoms. A care partner or family member’s observations can be highly beneficial for a physician to hear as their recollection may provide a more balanced view on the status of your disease.
(9) Dystonia vs. dyskinesia. Differentiation between dystonia (prolonged contraction of a large group od muscles) and dyskinesia (repetitive, uncontrolled movement) is important. Along with recognizing and documenting when these movements occur, it is important to see when they occur in relation to when you are taking your medication. Depending on when they occur, they may represent either too much or too little dopamine replacement.
(10) Other members of the care team. There may be other members of the care team that are involved in your care – physiotherapy, occupational therapy, nutrition, massage therapy to name a few. The patient can often serve as the best liaison between health professionals ensuring that concerns and management suggestions are integrated and known to the whole health care team.
Communication with your Parkinson’s physician is the cornerstone of your disease management and knowing what to convey is a vital part of that process. Giving them the necessary information that can help guide their treatment decisions will ultimately translate into better control over your Parkinson’s disease.