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Working With Your Healthcare Professional
Getting the most from your treatment
With Parkinson's disease, your long-term goal is to remain healthy and active, to minimize its impact on your life, and to maintain the best activities of daily living possible. Remember that both you and your healthcare team share this goal!
There are now many therapies available to treat Parkinson's disease, and some medications will suit you better than others. Finding the right treatment balance can take time—by working with your healthcare professional, you can decide on the best approach for you.
If possible, try to stay active in your own care. Find out when your medication is
likely to take effect, how long it is likely to provide you with good symptom control,
and take note of any possible side effects.
Always listen to your body and learn what the changes in your symptoms mean.
Your body will tell you if your medication is too little or too much. You may feel
that you want to shift your medication timetable forward or backward so that
you are 'on' at a particular time—however, discuss this with your healthcare professional first. It is important that you always consult your healthcare professional before making any changes to your medication.
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Avoiding side effects
The choice of Parkinson's disease medications should be based on considerations of obtaining the best symptom control for each individual, balanced with the fewest unwanted side effects. It is important that you understand what unwanted side effects your medication can cause. However, do not assume that you will definitely experience these—most of them you probably won't.
With careful management, many of the possible side effects from your medication can be reduced or avoided. For example, nausea is only usually a problem when you first start taking a medication and usually disappears after a week or two. Other side effects can often be managed by adjusting your other Parkinson's disease medications. It may help to start a new medication in the evening so that you sleep through any initial side effects. Try to avoid starting a new medication when you will not have access to your doctor or other healthcare professional, for example at the weekend or before you go on holiday. In some cases you may simply be unable to tolerate certain medications, and your doctor will probably switch you to an alternative therapy. Again, it is important that you always feel that you can discuss any questions or concerns about your medications with your healthcare team.
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A specialist team for managing Parkinson's disease
Once you have been diagnosed with Parkinson's disease, ideally you will have access to a specialist team of healthcare professionals who will work with you to find the
best way to manage your symptoms.
You may not need the support of every member of this team immediately, and
the healthcare professionals you see on a daily basis may change with your
treatment needs. It is important that you consider yourself and your family (and caregiver) as key members of any team involved in the management of Parkinson's disease.
When you visit any healthcare professional, it may help to be prepared with a list
of questions and concerns and to bring a notebook with you to write down what
you are told. Try to establish a good relationship with your team. Ask for and ensure that you get all the help you need to manage your condition.
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The core members of your team
These are the people who will help manage your health. But remember that you and your family are a central part of this specialist team—this is your condition.
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Your family doctor or general practicioner
This is usually your first point of contact and is the healthcare professional you will probably see the most over the years. They will look after your general health and keep all of your medical records. They will also help to coordinate the care you receive from other healthcare professionals involved in your treatment.
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Specialist doctor
This is a doctor, usually a neurologist or a geriatrician, who has specialist knowledge of Parkinson's disease. You may only see the specialist occasionally and referral is normally via your doctor—ask to be referred if you feel you would benefit from speaking to a specialist.
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Nurse
You may sometimes see a nurse, either in a doctor's office or your home, instead of seeing the doctor. There are an increasing number of Parkinson's disease nurse specialists who can provide specialist advice and information on coping with the day-to-day challenges of Parkinson's disease.
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Pharmacist
This is another important part of your team. Try to make sure that you use the same pharmacy all the time and that it has a record of all your medication. The pharmacist can give you advice about your drug treatment and ensure that over-the-counter medication and vitamin supplements do not adversely interact with your prescription drugs.
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Additional team members who may be useful
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Physical therapist
Because Parkinson's disease is a motor disease and affects your movement control, exercise plays an important role in helping people with Parkinson's disease maintain a healthy lifestyle. Physical therapists can assess problems you are having with mobility, balance, and posture. They can also advise on exercise routines, and provide advice on overcoming symptoms and minimizing its impact on your daily routine.
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Occupational therapist
Having Parkinson's disease does not necessarily mean that you have to give up your job if you are still working. An occupational therapist can help you plan your day, and balance work, relaxation, and leisure activities.
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Speech and language therapist
Speaking can be affected in the later stages of Parkinson's disease. Speech therapists can help improve speech quality and help you to minimize such problems as speaking too softly and lack of clarity. They can also help you cope with any swallowing problems that you may eventually encounter.
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Dietician
A dietician can advise you on how to plan a healthy diet and maintain the right weight. If you have problems with weight loss (or gain) or constipation, your doctor may refer you to a dietician. Dietary advice may also help your treatment, because diet (even including when you eat) can affect how well the drugs used to treat Parkinson's disease work.
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Psychologist
A psychologist may provide advice and counseling if you are finding it difficult to cope with your disease emotionally or need assessment or help with difficulties such as memory problems.
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Psychiatrist
This is a doctor who is an expert in mental health problems. They can help with problems that may occur, such as depression, anxiety, and disturbances in thinking and perception, which may require specialized treatment.
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Glossary of terms your healthcare professional may use
Becoming familiar with these terms may help you better communicate with your physician.
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On-time
'On'-time is the time when you find that your levodopa-containing medication is having a benefit, and your parkinsonian symptoms are generally well controlled.
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Off-time
'Off'-time is when your levodopa-containing medication is no longer working well for you, and your parkinsonian symptoms have returned, resulting in symptoms such as slowness, stiffness or tremor, and sometimes a total (akinesia) or partial (bradykinesia) immobility.
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Wearing-off
Wearing-off is where you begin to feel that the improvement gained from a dose of levodopa medication gradually diminishes and does not last until the time that the next dose of medication is due or begins to work (this feeling has often been likened to a car gradually running out of petrol). You may therefore feel that you need your next dose of medication sooner.
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Delayed on
Delayed 'on' is when there is an increased delay after taking your levodopa medication before you begin to feel the benefits. This may be more common with controlled-release preparations of levodopa, as they can take some time to dissolve in the stomach, enter the blood stream and travel into the brain in sufficient quantities to replace the missing dopamine.
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On-off phenomenon
The on-off phenomenon refers to sudden, sometimes unpredictable, changes in your symptoms, varying between mobility (usually with dyskinesia) and immobility due to the return of parkinsonian symptoms. These sudden fluctuations can have no apparent relationship to medication timing.
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Freezing episodes
Freezing episodes are sudden, brief (seconds to minutes) periods of immobility where you may find your feet 'stuck to the spot,' as if they are glued to the floor. Freezing most often occurs when trying to initiate walking, whilst turning in confined spaces, or when going through doorways.
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Dyskinesia
Dyskinesia is used to describe the abnormal, twisting, turning,'dance-like' movements that arise following prolonged treatment with levodopa preparations. These involuntary movements are often associated with the peak effects of levodopa and usually appear about the same time as 'wearing-off.'
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Dystonia
Dystonia involves sustained involuntary muscle contractions that result in abnormal positions or postures, most frequently in the foot. Dystonia can occur in either 'on' periods (when the person is usually mobile) or in 'off' periods (usually relatively 'fixed'), or both. Early morning dystonia refers to muscle cramping occurring in the early morning hours prior to taking the first morning dose of medication.
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