Issues for Patient Discussion

Transcription

1 onmotor complications radykinesia Screening Tools asked PD micrographia eurodegeneration Designed for Use by Family Practitioners remor on-off opamine agonists tiffness depression ostural instability wearing off

2 Issues for Patient Discussion Diagnosis and Early pd What is Parkinson s disease What to expect in the short-term: limitations and impact pd progression and long-term issues Where to find information and support Notes Symptoms What are the motor symptoms of pd What are the non-motor symptoms of pd Treatments What symptoms of pd can be treated When should treatment begin What medications are available What is levodopa What is a dopamine agonist Are there any neuroprotective treatments available Mid-stage pd Disease progression and complications Motor complications: wearing off, on-off, dystonia What is dyskinesia and its treatment What are non-motor symptoms Treatment options What are comt inhibitors What are mao-b inhibitors Are non-pharmacologic treatments available Advanced pd Disease progression and complications Are non-motor symptoms worse Treatment options What surgical options are available What is dbs What are rescue therapies PD SCREENING TOOLS PD SYMPTOMS QUESTIONNAIRE WE MOVE 2009

3 Parkinson s Symptoms Questionnaire Please check the areas where you are currently experiencing problems. Motor Symptoms Do you have Bradykinesia Bradykinesia is the slowing down and gradual loss of spontaneous movement; a major symptom of Parkinson s disease. Do you have Dyskinesia Dyskinesia is abnormal movement of voluntary muscles; may appear as a side effect of long-term drug treatment in Parkinson s disease and may worsen in response to stress. Do you have Dystonia If yes, where Dystonia commonly involves the head, neck and feet. Dystonia is sustained muscle contractions, usually producing twisting and repetitive movements or abnormal postures or positions Do you have Rigidity Muscular stiffness that is common in people with Parkinson s disease. Rigidity is characterized by a resistance to movement in the limbs. Do you have Tremor Rhythmic involuntary movement affecting various parts of the body. Do you have any Postural Instability Difficulty with balance. Do you have a Propulsive Festination Disturbance of gait typical of parkinsonism: walking steps become faster and faster with progressively shorter steps, which pass from a walking to a running pace, and may precipitate falling forward. Do you have walking problems Do you have falls If yes, how many times in the past week Do you have handwriting problems Micrographia is a tendency to have very small handwriting due to difficulty with fine motor movements in Parkinson s disease. Do you have speech problems Do you have swallowing problems Any coughing after drinking liquids or have food caught in your throat Do you have Excessive Drooling Do you have any Blepharospasm Spasmodic blinking or involuntary closing of the eyelids; this is a form of dystonia. Do you have On-Off Effects These are fluctuations that occur immediately, as quickly as you might turn off a light switch: mobility changes suddenly and unpredictably from a good response (on) to a poor response (off ). Do you have Wearing Off Effects Occurring when each does of drug is effective for shorter and shorter periods of time. Cognition The cognitive function is a person s ability to perceive, to reason, and to understand. Do you have trouble thinking or expressing your thoughts clearly Do you have memory problems Do you feel anxious, or nervous Do you feel depressed If yes, are you on an antidepressant Parkinson s Symptoms Questionnaire courtesy of Susan Heath, rn, ms PD SCREENING TOOLS PD SYMPTOMS QUESTIONNAIRE WE MOVE 2009

4 Parkinson s Symptoms Questionnaire Are you engaging in new behaviors that cause family stress (compulsions, risk taking, gambling, or other novelty seeking) Autonomic Symptoms The autonomic nervous system controls internal organs in the body such as the heart, the lungs, etc. Do you have urinary urgency or frequency Sleep Do you have difficulty falling asleep Do you have vivid dreams Do you see things that others do not (such as visual hallucinations) Do you have abnormal sweating Do you have lightheadedness upon standing Do you have sexual problems Impotence or increased sex drive that causes problems Do you have constipation Diminished ability of intestinal muscles to move stool, often resulting in difficulty voiding or a very hard stool. Do you have dry, flaky skin on your face and/or hands Please describe any other symptoms you are experiencing. PD SCREENING TOOLS PD SYMPTOMS QUESTIONNAIRE WE MOVE 2009

5 Questions that Patients Frequently Ask and Some Possible Answers Should I quit my job The answer depends on how much motor function your job requires, how impaired you are, and how important the job is to you. There is no need to quit right now if you want to keep working, as long as you can continue to safely perform your job. Medications are likely to help you remain working for at least a few years. If you do leave your job, you are likely to qualify for disability, though the application process can be difficult. Should I exercise yes. Low-impact aerobic exercise is excellent for your health, and is not prevented by your disease. Walking, swimming, yoga, gardening, stationary bicycling, and light weight-lifting are all good choices. If you want to participate in running, biking, or other activities that require fine balance, we should assess your condition regularly. What kind of diet should I eat A healthy diet with plenty of fiber is the best choice. Your gut movements may slow down with pd, and fiber can help keep it moving. Some patients find that high-protein meals interfere with the effectiveness of their levodopa if that happens, we can talk about strategies to reduce the problem. Can I keep smoking Drinking coffee Drinking alcohol You should stop smoking of course! Caffeine may worsen your tremor, and may prevent you from getting a good night s sleep, making you more drowsy during the day. If these are problems, cut back on caffeine. Alcohol can cause confusion, low blood pressure, and imbalance. These may be a problem for you, and if so, cut back on alcohol. surgery exercise alcohol travel driving coffee PD SCREENING TOOLS FREQUENTLY ASKED QUESTIONS WE MOVE 2009

6 Are there drugs that can slow the disease There are not yet any drugs that definitely slow the disease, though several clinical trials are ongoing. Some patients take very high doses of the dietary supplement coenzyme q10, based on a single study which suggested it may have a very modest effect on the disease. Unfortunately, the cost of the supplement at the doses used (1200 mg/day) is very high and long-term safety is unknown. Can I travel You can certainly keep traveling as long as you remain mobile. You may want to arrange for a wheelchair to avoid long walks in airports, museums, or other destinations. Make sure you bring your prescriptions with you, in case you need to refill them on the road. Can I drive Maybe. Most people with pd are able to continue driving safely. However, pd slows reaction times, and can make multi-tasking harder. A driving evaluation may be a good idea. Levodopa and dopamine agonists may make you drowsy. Although it is rare, a few people taking these drugs have fallen asleep at the wheel. If you ever feel even the slightest bit of sleepiness while behind the wheel, pull over immediately. Should I have surgery for my pd Surgery for pd is an option if medications don t provide optimal benefit or cause intolerable adverse effects. We ll have a lot of time to review your options, and I will send you to see a specialist for an evaluation before then. Surgery can improve your symptoms as well as levodopa can, but more consistently with fewer off periods. Surgery can also allow us to reduce your medications, and that can reduce your side effects. Can I undergo surgery for other conditions You can still have surgery for other necessary conditions. Before you do, you need to give the anesthesiologist a complete list of all your medications. You need to avoid medications that may worsen your pd symptoms (these are typically anti-nausea drugs). You may be more susceptible to becoming confused due to the hospital setting, pain medications, and/or sedatives. Your recuperation after surgery may take longer. PD SCREENING TOOLS FREQUENTLY ASKED QUESTIONS WE MOVE 2009