PD Questions


	102 Questions About Parkinson's Disease: A Patient's Guide BY: Paul Tuite, MD, Nestor Galvez-Jimenez, MD, Elspeth Sime, RN, Jan Duff, RN Table of Contents: COMMON QUESTIONS ABOUT PARKINSON'S DISEASE What is Parkinson's Disease? What is the cause of Parkinson's disease (PD)? Who first discovered PD? Who gets PD? How common is PD? Is there an inherited form of Parkinson's? Do toxins cause Parkinson's? Can Parkinson's occur from an infection? Can Parkinson's occur from medication? What does parkinsonian and parkinsonism mean? What are the important features of parkinsonism? What are the four key features of parkinsonism? Are all tremors due to PD? What are some other causes of tremor? What are some other features seen in PD? Does response to treatment help make the diagnosis of PD? Summary of the characteristic features of PD: Just because I have features of Parkinson's Disease does this mean I have Parkinson's Disease? What are the other parkinsonian syndromes? COMMON QUESTIONS ABOUT EARLY PD What initial features (those features seen early on) suggest a diagnosis other than PD? Are there any tests that can make the diagnosis of PD? How does Sinemet® or levodopa/carbidopa work? What does carbidopa do? Does the medication stop working? What if there is no benefit from medication? Is treatment with Sinemet® harmful? What is my future if I get PD? (What is the prognosis?) What determines if and when to treat? COMMON QUESTIONS ABOUT LATE PD What features can be seen in PD after 5 to 10 years? What are motor fluctuations? What are some medical treatment of motor fluctuations? Should I avoid protein if I have motor fluctuations? What is freezing? What is the cause of freezing? What are some treatments for freezing? How can others help with freezing? Swallowing Problems What should be done for swallowing problems? What are the common-sense treatments for swallowing difficulties? What should be done for those with chronic swallowing problems? What is the cause of speech difficulties? How can speech difficulties be treated?: What can be done for unsteadiness and falls? What about footwear? If I fall how should I get up alone? What are the autonomic nervous system problems that can occur in PD? What is the cause of lightheadedness & faints? What should be done for lightheadedness & faints? Are there any medications that help with lightheadedness? What is the cause of constipation in PD? How is constipation treated? What are the medications that help with constipation? What are some bladder problems in PD? What are the causes of bladder problems in PD? How do I deal with bladder problems? Are there any medications that may help bladder problems? What are dyskinesias? What are some neuropsychiatric problems seen in PD? What is dementia? What is the most common cause of dementia in the general population? What is the cause of dementia in PD? How common is dementia in PD? What are some treatable causes of dementia? Can patients with Alzheimer's disease look like they have PD? Should patients who have dementia and parkinsonism be treated with levodopa? What is the cause of depression in PD? Can depression be confused with dementia (memory loss)? How is depression treated in PD? What are some causes of hallucinations & vivid dreams in PD? What are some causes of confusion in PD? What are some examples of delusions? What are some causes of delusions? How are delusions treated? How are neuropsychiatric problems treated? What are the two different types of neuroleptics and how do they work? What are the most common atypical neuroleptics? What are some important aspects about Clozaril (Clozapine®)? What should I know about Olanzapine (Zyprexa®)? TIPS FOR PATIENTS WITH PD What are some practical tips that help with dressing? What are some tips for the bathroom? What are some eating tips? What are some tips for around the household? What are some tips for dealing with night-time difficulties? NON-MEDICAL TREATMENTS FOR PD Is exercise a good idea for patients with Parkinson's? What are the 3 categories that exercise affects What exercises are good for mobility? What exercises are good for power? What exercises are good for endurance? Will physical therapy cure losses in PD? If physical therapy is not a cure what good is it? Are there other treatments that may help with my PD? MEDICAL TREATMENTS FOR PATIENTS WITH PD Why use a diary for PD? What should be recorded in a PD diary? What are the 3 treatment strategies for PD? Is PD preventable? What is restorative therapy? What is symptomatic therapy? COMMON QUESTIONS ABOUT PARKINSON'S DISEASE What is Parkinson's Disease? Parkinson's Disease, also known as PD, is a condition with progressive loss of brain cells that produce a chemical called dopamine. Dopamine is important in the performance of movements; therefore altered movements are common in PD. Specifically, movements are slowed and are often combined with a tremor (rhythmical shaking).PD is classified as a degenerative condition—which means there is a slow and progressive decline in function resulting in a reduction in the quality of life as the disease progresses. Although medications can often improve disability, presently there is no cure for PD. What is the cause of Parkinson's disease (PD)? No specific cause has yet been discovered. PD may have more than one cause. Who first discovered PD? PD was first described by James Parkinson in 1817 in his essay on the "Shaking Palsy." Who gets PD? Nearly every racial/ethnic group is affected. The highest rate is seen in Parsis (a group of Persians who immigrated to India) North America and Europe have rates higher than Sardenia, Nigeria, Japan, and China Families where many individuals have PD (for example in southern Italian or Greek families) may have. a gene abnormality on chromosome 4 that is the cause of their condition. How common is PD? Prevalence of PD is the number affected in a population in a given time. The prevalence of PD is 120 to 180/100 000 in a Caucasian population, and is 1% in a population over 65 years of age Incidence is the number of people who develop a condition in a population in a given time. The incidence is 20/100,000 per year Approximately over 500,000 to 1,000,000 Americans have PD. Is there an inherited form of Parkinson's? In some rare circumstances, for example in southern Italy and Greece, PD can be inherited from one's parents (genetic form of PD). However, for most individuals affected with PD no one else in the family is affected. Do toxins cause Parkinson's? Scientists have focused on toxins in the environment as potential causes. Presently there is no single toxic substance that produces typical PD. Nonetheless, researchers discovered that a few drug addicts in California appeared to have PD. These unfortunate individuals injected themselves with a narcotic that was contaminated. The contaminant is MPTP (1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine) and it causes parkinsonian symptoms by causing loss of dopamine-producing nerve cells. MPTP-induced PD is not exactly like PD that occurs in others. Nonetheless, much research has focused on MPTP as it can be given to monkeys who then become parkinsonian. This monkey model has lead to a greater understanding of PD and treatments continue to be developed. Can Parkinson's occur from an infection? At the time of the influenza outbreak from 1917-1930 some individuals developed altered consciousness and high fever which was due to infection/inflammation of the brain (called encephalitis). This outbreak has been called Von Economo's encephalitis in tribute to one of the scientist who studied it. A few individuals who developed encephalitis later developed parkinsonism. This condition, however, is not exactly Parkinson's disease. The type of symptoms experienced and the pathology of the brain differ slightly from those of classic PD. Nonetheless, this condition has lead many researchers to consider the possibility that a brain infection may be important in the cause of PD in some individuals. This theory is not well proven and the explanation of the cause(s) of PD remains unknown. In conclusion, it is not clear if brain infections cause PD. Can Parkinson's occur from medication? Certain medications (those that block or deplete dopamine in the brain) can cause a condition that resembles PD. Once these medications are discontinued the symptoms of PD should resolve. What does parkinsonian and parkinsonism mean? The term parkinsonian is an adjective and is used to describe individuals who have features of PD. There are other conditions that can resemble PD, so using the term parkinsonian does not necessarily mean the diagnosis is PD. Likewise, the noun parkinsonism is used to describe individuals who may or may not have a diagnosis of PD, but have some features of PD. What are the important features of parkinsonism? Individuals who have at least 2 of the following 4 features are said to have parkinsonism: 1.Tremor (classically a tremor which occurs when the limb is at rest) 2.Rigid tone (rigidity) 3.Slowness (bradykinesia) or absent movements (akinesia) that can be seen with the performance of a repetitive task such as tapping one's fingers 4.Postural changes (such as a stooped posture) The presence of a classical pill rolling rest tremor is very highly suggestive of idiopathic or drug-induced disease, since it usually does not occur in other parkinsonian syndromes. A stooped posture is common in PD; however, an unstable posture and falls are usually only seen years after the onset of symptoms. Therefore, the presence of falls in someone recently diagnosed with parkinsonism suggests a cause other than PD. What are the four key features of parkinsonism? TRAP: Tremor (typically a rest tremor) Rigidity Akinesia/bradykinesia Posture—stooped Are all tremors due to PD? No. What are some other causes of tremor? Essential or familial tremor Medication-induced tremor Hyperthyroidism Others Essential Tremor Slowly progressive condition that is associated with tremor and is without slowness or rigidity. Tremor often involves the head, voice and arms. Disability arises from difficulty holding a cup and/or spoon, writing and dressing. What are some other features seen in PD? Difficulty turning in bed Frozen, painful shoulder Stiffness, numbness or pain in a limb Altered handwriting (slow and/or small) Difficulty with fine finger coordination, e.g. buttoning, using utensils Decreased facial expression (may appear depressed) Decreased arm swing, dragging a leg or shuffling steps Symptoms initially begin on one side of the body Does response to treatment help make the diagnosis of PD? No, the relationship between response to treatment and diagnosis of PD is not yet clearly understood. Summary of the characteristic features of PD: Bradykinesia or akinesia Rest tremor Rigidity Stooped posture Onset of symptoms are initially on one side of the body Just because I have features of Parkinson's Disease does this mean I have Parkinson's Disease? No, not all cases of parkinsonism are due to Parkinson's disease. Your doctor should be able to determine your diagnosis based on: your history (including your medications and your response to treatment) your examination Sometimes the diagnosis of Parkinson's disease is hard to make early on and only with time can one be more certain because there are other conditions that resemble PD. What are the other parkinsonian syndromes? neurodegenerative disorders (progressive supranuclear palsy, PSP; multiple system atrophy, MSA; corticobasal degeneration, CBD) postencephalitic parkinsonism drug-induced parkinsonism toxic (manganese, carbon monoxide, MPTP, Wilson's disease) Creutzfeldt-Jakob disease (Mad Cow's Disease) Alzheimer's disease (AD) traumatic parkinsonism (i.e. Boxer's Parkinsonism) parkinsonism associated with tumors normal pressure hydrocephalus (increase water in the skull) arteriosclerotic pseudoparkinsonism (APP) COMMON QUESTIONS ABOUT EARLY PARKINSON'S DISEASE What initial features (those features seen early on) suggest a diagnosis other than PD? Frequent unexplained falls Frequent unexplained fainting spells Impaired sexual function (loss of erections in men; other than that due to prostate surgery or psychogenic causes) Unexplained loss of bowel and/or bladder control Slurred speech (rather than soft speech seen in PD) New changes in breathing patterns at night – prolonged periods of stopped breathing (apnea) Prominent and frequent choking problems with liquids and solids Are there any tests that can make the diagnosis of PD? There is no test that makes the diagnosis of Parkinson's disease. The diagnosis is made based on one's symptoms, examination and response to levodopa treatment over time, and even then the accuracy rate is only 75-80% correct. A MRI or CT scan of the brain may be done to rule out other causes. A Positron emission tomography (PET) scan of the brain is a research tool and is not used in standard medical practice to see if there is a deficiency in dopamine (a Fluorodopa (F-dopa) PET scan). Conditions other than PD may have a dopamine deficiency but, the pattern of loss may help differentiate these. Because of the cost ($2300) and inaccessibility for most neurologists, PET scans are usually not performed. Most neurologists use points #2 and #3 to address the issue of diagnosis. How does Sinemet® or levodopa/carbidopa work? Sinemet®, (also called levodopa/carbidopa), is a medication taken by mouth and enters the gastrointestinal tract where it is absorbed into blood stream. Some of the medication eventually enters into the brain where it is taken up by nerve cells and converted from levodopa into dopamine. It is dopamine which is the effective agent in improving many parkinsonian symptoms. What does carbidopa do? Carbidopa blocks the break-down (metabolism) of levodopa in the gut so that more levodopa gets into the brain where it is effective. As a result, carbidopa prevents some of the side-effects ( light-headedness, nausea, vomiting) often associated with taking just levodopa. Does the medication stop working? Patients with PD typically maintain a response to treatment, but the duration of each pill's effectiveness decreases over time. The benefit that each pill provides the patient may decrease as you continue to use the medication. What if there is no benefit from medication? Those with parkinsonism that is not PD often do not respond to treatment or if they do, the response will be mild and may last only a few years. These are the truly "resistant" individuals (those who do not get an improvement with treatment and therefore are less likely to take pills because they do not make them better). However, before one concludes they are resistant an adequate trial of medication must be performed. Is treatment with Sinemet® harmful? This has never been proven. Some researchers have demonstrated that levodopa may be harmful for nerve cells grown in a laboratory and therefore have recommended using dopamine agonists or delaying the use of levodopa until as long as possible. There is little scientific evidence that helps answer the question when and how to use levodopa. We do know that Sinemet is the most effective treatment for PD and clearly has improved the quality of life. The decision about treatment should be made by the patient/family and physician. Issues of quality of life are more important when considering treatment for Parkinsonism. What is my future if I get PD? (What is the prognosis?) Predicting the future is impossible. If you have the typical features of PD and you respond to symptomatic treatment (Sinemet® or other medications) this suggests that you may have PD and the course will probably be better than in other conditions which do not respond to treatment. The course of PD is one of slow evolution spanning years to decades. Most patients respond well to medication for 6-10 years without disabling problems. After 5-10 years a response to medication still exists but medication-related difficulties and other problems often develop. After 10-12 years problems with balance may occur. What determines if and when to treat? PD does not always need immediate treatment. Therefore the following factors are considered before a treatment program is implemented: Job: working or retired Tremor and degree of disability and/or embarrassment it causes Age Other medical conditions Presence of memory loss and/or confusion Degree of disability due to PD What the patient/family/doctor decides COMMON QUESTIONS ABOUT LATE PARKINSON'S DISEASE What features can be seen in PD after 5 to 10 years? Motor fluctuations Freezing Dyskinesias Neuropsychiatric problems Swallowing problems/speech difficulties Unsteadiness, falls Autonomic nervous system dysfunction (i.e. bladder or sexual difficulties) Night-time difficulties What are motor fluctuations? These are fluctuations in mobility: ranging from mobile "on periods" to immobile "off periods. Fluctuations may be predictable, unpredictable or sudden What are some medical treatment of motor fluctuations? Adjusting dose (number of milligrams or tablets) and timing of medication. Using a dopamine agonist Using Sinemet CR Using COMT Inhibitors (when available) Adding Symmetrel Adding deprenyl Should I avoid protein if I have motor fluctuations? This is a complicated question. It has been shown that protein may compete with levodopa for absorption in some patients, and as a result less levodopa gets into the body to where it will be used. However, it is unclear exactly what this means in day to day life in the addressing the problems of motor fluctuations. All people need protein to survive. Some individuals avoid protein at noon time and consume protein later in the day. If you wish to use this or to a low protein supplement it is wise to keep track of your condition in a diary before and after making the change to see if it is truly helpful. What is freezing? The term freezing is used in PD to describe difficulty in commencing a task or the sudden interruption of a task. For example, this is when there is difficulty getting out of a chair or problems upon starting to speak. It most typically is seen in those who have their feet stick to the floor. What is the cause of freezing? At present there is no clear explanation why freezing occurs. Some researchers believe that freezing is due to abnormalities in neurotransmitters other than dopamine. They suggest that naturally occurring morphine-like substances in the body (endorphins or enkephalins) might be responsible. What are some treatments for freezing? The cause of freezing is poorly understood and there is no medication, at present, that helps. Yet, one can use certain tricks to fool the body and overcome freezing. These tricks have been handed down from patients and therapists to the new generation of patients who suffer from freezing. Freezing of gait may be helped by: Use rhythm to help initiate walking - Listen to walkman with constant beat - Tap on hip, leg - Tap with cane - Sing or count out left-right-left, etc Use walker with wheel and brakes: keeps walking smooth Change weight distribution & direction of movement: Move backwards or sideways Push down one foot before lifting it Lift up toes and shift weight onto your heels Rock from side to side Bend then straighten knees Raise arms in a sudden, short motion Try to kick cane placed in front of foot or try to step over the tip of upside-down cane How can others help with freezing? Don't push or pull: touch lightly Demonstration: have patient repeat your movements: "follow me" Minimize distractions or interruptions: continue to walk through doorway without stopping Rhythmical commands: "right, left, right" Visual cues on the floor to step over (i.e. place your foot in front of the person who has freezing and tell them to "step on or over the foot"-this often gets them going) Swallowing Problems This often occurs after many years to decades after the onset of symptoms What should be done for swallowing problems? First, swallowing problems can be treated by common sense measures, and occasionally an evaluation by a swallowing expert with a swallowing study is helpful. What are the common-sense treatments for swallowing difficulties? Eat smaller, more frequent meals Cut food into small pieces, chew slowly Sip liquids after each swallow of solid food Eat soft foods: chicken, ground meat, soup, stew, meatloaf, etc. If problems with liquids substitute with Jell-O, popsicles, ice chips, ice cream or use food thickeners Keep food warm with plate warmers (never too hot or too cold) Take small sips of liquids; use a straw Use tall glasses which are easier to empty Soft foods, e.g. yogurt & apple sauce can be place further back on the tongue Swallow several times after each mouthful before the next bite Eat 1/2 teaspoon of solid food at a time Don't mix solids and liquids in your mouth Make sure dentures fit well Sit up to eat; lower chin to chest when swallowing and if voice sounds "wet" swallow again. Take pills with a banana, warm apple sauce or other pureed fruit Medication changes may improve swallowing function Anticholinergics often decrease saliva and may worsen swallowing Family members should know the Heimlich maneuver What should be done for those with chronic swallowing problems? One concern is that impaired swallowing could cause a reduction in overall food consumption resulting in inadequate calorie intake and progressive weight loss. Another concern is that food might be swallowed improperly, enter the lungs, and cause pneumonia. Swallowing studies are helpful for those who develop pneumonia from a swallowing problem. These studies can confirm the suspicion that a patient is not safe to swallow foods. In these certain cases a permanent feeding tube may be placed into the stomach to provide adequate nutrition without the risk of pneumonia. What is the cause of speech difficulties? Often speech difficulties arise due to diminished volume (hypophonia) that occurs in PD. How can speech difficulties be treated? Before speaking: Organize thoughts Swallow excess saliva Check that dentures are snug Take a deep breath When speaking: Keep head up Speak clearly and in an exaggerated manner and use facial expressions Keep ideas short & concise Pace syllables (may use a pacing board) Don't speak in noisy situation Take breaths as you speak Practice speaking Speak for yourself; educate others Exercise tongue, lip & jaw muscles Use voice amplifier or other communication devices if needed Clonazepam .25-.50 mg may help with speech rate Consult a speech therapist What can be done for unsteadiness and falls? Prevention is very important as falls are common later on in PD. Make sure there is adequate lighting Keep floor clear of clothing, furniture, throw rugs Use of hand-held shower device Have bench or chair placed in shower/tub Steps and walkways should be in good condition Furniture & appliances should be secure & stable Place an answering machine and a telephone near floor level Raise beds, toilet seats, etc. Use caution when near pets such as cats or dogs which may cause falls Plastic car seat covers make it easier to get in and out of car but, fasten seat belts to prevent from sliding down in seat Don't wax bare floors or use throw rugs Wall to wall carpeting may soften a fall Wipe up spills immediately Concentrate only on walking Rolling walker What about footwear? Wear proper fitting footwear Make sure shoes are in good shape Wear leather-soled shoes as rubber or crepe soles tend to stick to the floor Wear slip-on ice grips in icy weather If I fall how should I get up alone? 1.Rock onto your side 2.Push to a sitting position 3.Get on all fours & crawl to something solid 4.Firmly grasp it with both hands placed well apart 5.Bring the strongest knee up & move the foot forward 6.Press down with both hands and that foot 7.Lift hips and rise up What are the autonomic nervous system problems that can occur in PD? Light-headedness Constipation Frequent urination (more common in women) Impotence What is the cause of lightheadedness & faints? These are usually is due to inadequate blood flow to the brain which may be due to a variety of different factors (either alone or in combination): For example some causes include: Long-standing PD may be associated with blood pressure regulation difficulties Medications: Sinemet®, dopamine agonists, Clozapine®, others What should be done for lightheadedness & faints? Review all medications Elevate head of bed by placing blocks under the bed legs Increase fluid intake Don't stand up suddenly; move feet and legs before arising and get up slowly Don't remain standing in one place too long—sit down if you feel faint Wear support hose or elastic stockings Avoid alcohol, hot showers, excessive exercise (all dilate blood vessels) Increase salt intake (300 mg 2x daily) Are there any medications that help with lightheadedness? Domperidone Florine Midodrine Ephedrine Salt-pills Lodosyn® (extra caridopa) What is the cause of constipation in PD? Usually this relates to the underlying condition of PD where there are pathological changes in the autonomic nervous system. This system regulates the motility of the gastrointestinal tract. As a result the gut motility is slowed and constipation results. Other causes of constipation include: Diet: too much solid food without and inadequate liquid or fiber intake Medications that slow gut motility Other causes How is constipation treated? Establish regular eating and bowel habits Increase bulk and fiber: - whole grain bread and cereals - raw fruits - leafy vegetables - bran sprinkled over cereal - lentils, split peas & barley Increase water intake to 4-8 glasses/day Daily exercise Senna tea and prune juice Hot beverages including hot water has a laxative effect Medications What are the medications that help with constipation? Bulk agents: fibyrax or metamucil Stool softeners: docusate (Colace) Purgatives What are some bladder problems in PD? Frequent visits to the bathroom (urinary frequency) Dribbling and incontinence (loss of urine) Incomplete emptying of bladder What are the causes of bladder problems in PD? A bladder infection Women may lose urine related to bladder changes from childbirth Benign enlargement of the prostate gland. (Although this is one of the most common causes of urinary difficulties in men, PD patients should be aware that this is not necessarily so in them. You should have a thorough assessment of the bladder mechanisms before assuming that the urinary problems you have are solely due to prostate enlargement. Discuss it with your doctor. In PD patients most commonly, bladder problems are due to the underlying parkinsonism.) How do I deal with bladder problems? Limit fluids at night and when going out Avoid diuretics such as caffeine in cola, coffee, tea, grapefruit juice Exercise pelvic muscles by practicing starting & stopping urine stream Have bedpan or commode at bedside Use of cotton underwear with liners or pads; or condom catheter for men Cranberry juice reduces the unpleasant odor of incontinent urine Levodopa may cause of reddish-brown stain in urine (may need a test to eliminate the possibility of blood in urine) Treatments of "off periods" may improve accompanying bladder problems Consult urologist who will determine bladder capacity, ability to void, etc. Are there any medications that may help bladder problems? Proscar (Finasteride) Imipramine (tofranil®) Ditropan What are dyskinesias? Dyskinesias are involuntary movements that occur in PD other than tremor and only occur with treatment. These involuntary movements are often twisting, rocking, writhing and sometimes are sustained. The movement is described by its appearance and when it occurs in relation to medication. For example, peak-dose dyskinesias are typically seen 1 to 3 hours after taking medication and these are flinging type of movements. Diphasic dyskinesias (also known as dyskinesia-improvement-dyskinesias or DID) occur at the time period between the off and on state. Lastly, off-dykinesias occur in the immobile or off state. These typically occur in the morning upon awakening and include sustained twisting of the foot or toe cramping. These types of dyskinesias are often called off dystonia because they occur in the off state and there is dystonia which means a type of sustained spasm/cramping is present. What are some neuropsychiatric problems seen in PD? Dementia: Loss of memory Mood swings: Depression (down state) and mania (up or overly active state). These fluctuations in mood may occur just like the fluctuations in mobility with down states occurring in the off state and mania in the on state. Hallucinations: Seeing things/persons that aren't really there Vivid dreams Confusion Delusions: Fixed beliefs despite evidence to the contrary Behavioral (Personality) changes What is dementia? Dementia is a permanent and progressive loss of memory and cognitive function that prevents one's ability to work and to maintain social interactions. It can be accompanied by subtle or overt personality changes. What is the most common cause of dementia in the general population? The most common cause is Alzheimer's disease. What is the cause of dementia in PD? There are several potential causes of dementia in PD. Some individuals develop pathological changes like those of Alzheimer's disease, others have diffuse Lewy body disease (also known as Lewy body dementia or dementia with Lewy bodies). There may be other factors that can cause dementia in PD. How common is dementia in PD? Dementia in PD occurs in 10-30% of patients and is more common in patients who are older. Dementia, if it develops, typically occurs after many years of PD. Dementia which occurs early suggests a diagnosis other than PD. What are some treatable causes of dementia? Low thyroid hormone levels (hypothyroid) Vitamin B12 deficiency Folate deficiency Depression (pseudodementia) Can patients with Alzheimer's disease look like they have PD? Yes, demented patients may appear to have Parkinson's disease because they are rigid and slow, and as a result, bed-bound. Also many Alzheimer's patients are given neuroleptic medications (blockers of the dopamine function) to treat agitation with the result of worsening their rigidity and slowness. It is important to review the history in these cases as in Alzheimer's the dementia is the initial symptom and later the parkinsonian features occur and relate to the underlying cause of their dementia. In PD, the converse is true: the parkinsonian features are initial and later, in some individuals, dementia is seen. Should patients who have dementia and parkinsonism be treated with levodopa? It is up to your treating physician. Usually not, because levodopa treatment will probably cause side-effects such as confusion without any improvement in their parkinsonism. Furthermore, agitation or belligerent behavior may be exacerbated by the medications, therefore, it is best that your physician follow you closely to determine at one point, if needed, treatment may be safe. What is the cause of depression in PD? The cause is unknown. It may be a reactive depression—meaning the depression occurs as a reaction to developing PD, or it may also be a depression caused by underlying changes in the brain chemistry associated with PD. Can depression be confused with dementia (memory loss)? Yes, but rarely. How is depression treated in PD? Just as it is treated in other individuals. This includes psychotherapy, counseling, medications, and rarely electroconvulsive shock treatment. What are some causes of hallucinations & vivid dreams in PD? Medications: levodopa, dopamine agonists, others Other medical conditions/dementia What are some causes of confusion in PD? Medications: Parkinsonian medications and others Metabolic derangements: thyroid, vitamin B12 or folate deficiencies, dehydration Infections: urinary tract , pneumonia or other febrile illnesses Cognitive dysfunction/dementia Other causes What are some examples of delusions? Delusions of grandeur: "I am God." Delusions of persecution: "The CIA is after me." Delusions of jealousy: "I know you are cheating on me." (a very common complaint of those with PD) What are some causes of delusions? Underlying psychiatric condition Underlying dementia Medications: levodopa, dopamine agonists, others Other medical conditions How are delusions treated? Reduce levodopa or dopamine agonists (may worsen PD) Use a neuroleptic medication. How are neuropsychiatric problems treated? Decrease dose of medications: levodopa, dopamine agonists (PD may worsen) Stop any or all unnecessary medications Neuroleptics: (a type of psychiatric medication) - Typical neuroleptics: haloperidol (not recommended as it may worsen your PD) - Atypical neuroleptics: clozapine (clozaril®) and olanzapine (zyprexa®) What are the two different types of neuroleptics and how do they work? Typical and Atypical neuroleptics Typical neuroleptics block dopamine transmission (communication) throughout the brain and therefore run the risk of worsening slowness and rigidity in PD at the same time it may be improving hallucinations. Typical neuroleptics block chemical transmission - involved in psychological pathways (hallucinations improve) - involved in motor pathways (Parkinson's worsens) Atypical neuroleptics do not usually worsen parkinsonian symptoms because they do not significantly affect dopamine transmission important in movement. Atypical neuroleptics blocks chemical transmission - involved in psychological pathways without impairing motor pathways (hallucinations decrease but Parkinson's does not change) What are the most common atypical neuroleptics? Clozaril (Clozapine®) Olanzapine (Zyprexa®) Risperidone (Risperdol®)--No longer recommended as it may worsen PD symptoms What are some important aspects about Clozaril (Clozapine®)? A test dose of 12.5 mg is required to see if the blood pressure drops too much. This usually results in light-headedness or fainting if the blood pressure falls. Because this medication may slow or stop the production of white blood cells it is potentially fatal. Consequently weekly blood tests (CBC) must be obtained to check for adverse reactions to the drug. Each week, if blood work comes back normal, the prescription is filled. This reaction occurs in about ~1% of patients and is reversible if the medication is stopped in time. Because of the cost of clozaril and the weekly blood tests many use this medication as a last resort. What should I know about Olanzapine (Zyprexa®)? Its use does not require weekly blood tests Initial dose ½ 5mg tablet or 2.5 mg tablet (once available) and it is usually taken at night-time The dose is increased as needed up to a maximum of 20 mg. Usually 2.5 or 5 mg nightly is adequate. Although called an "atypical neuroleptic", olanzapine can worsen parkinson's at higher doses by blocking dopamine transmission important in movement. TIPS FOR PATIENTS WITH PARKINSON'S DISEASE What are some practical tips that help with dressing? Use Velcro fasteners Elastic bands on shoes often help Wear sweat suits Use Dressing stick or cane Purchase a long shoe horn or long-handled reaching tongs What are some tips for the bathroom? Elevated toilet seat Safety rails Non-skid mats Bath or shower chairs Foam rubber handles for toothbrush, etc. Electric toothbrush/razor Soap on a string or liquid soap Shower hose Long-handled brush or sponge, terry cloth wash mitts What are some eating tips? Clip on ring to keep food on plate Rocker knife Insulated cups with opening Warming trays What are some tips for around the household? Extended reach handles for dusting & cleaning Aprons with large pockets Spray hose to clean dishes & vegetables "Lazy Susan" to help store supplies What are some tips for dealing with night-time difficulties? Difficulty moving in bed: Use satin sheets Difficulty getting in/out of bed: - Elevate bed with blocks - Rope to help pull out of bed Frequent urination: Commode at bedside or bedpan Hallucinations: (see section on hallucinations) Dyskinesias: (see section on dyskinesias) Kicking/yelling/screams: These may be due to medications (review them) One may try to slowly eliminate all unnecessary medication. This may also represent REM Behavioral Disorder that can be treated successfully with clonazepam (Klonopin®) at night or recent reports suggesting adjusting your levodopa even further may provide some relief. NON-MEDICAL TREATMENTS FOR PATIENTS WITH PARKINSON'S DISEASE Is exercise a good idea for patients with Parkinson's? Yes, exercise can help improve overall physical health and may even slow some of the physical losses associated with disease. What are the 3 categories that exercise affects? Mobility Power Endurance What exercises are good for mobility? Stretching Tai Chi What exercises are good for power? Low weight, high repetition weight-training What exercises are good for endurance? Brisk walking Swimming Bicycling Stairmaster Rowing machines Dancing Will physical therapy cure losses in PD? Physical therapy is not a cure; however, it can be quite helpful. Still, the benefit(s) may be short-lived and last only as long the therapy is being done. Therefore, it is important to learn something from therapy sessions and continue to employ these exercises long after it is completed. If physical therapy is not a cure, what good is it? It can improve quality of life by addressing specific problems. This problem-oriented approach deals with issues such as: Walking problems: freezing, shuffling/festinating, retropulsion/propulsion Stooped posture Painful joints: frozen-shoulder, knees They also provide assistive devices such as a cane, rolling walker and wheelchairs—in an attempt to maintain independence in as safe manner as is appropriate. Are there other treatments that may help with my PD? Yes, there are many alternative therapies now available in addition to physical therapy and exercise programs. These therapies may aid in maintaining coordination and mobility for patients with chronic conditions such as PD. It is important to look at alternative medical therapies as they may provide some benefit. However, just as with traditional forms of treatment, patients must carefully weigh the results of alternative treatments to ensure that benefit is obtained without disabling side-effects or excessive cost. MEDICAL TREATMENTS FOR PATIENTS WITH PARKINSON'S DISEASE Why use a diary for PD? A PD diary is daily record of the features and treatments of one's condition. This 24 hour record helps in optimizing disease management by allowing the physician to study the relationships between medication doses, motor fluctuations, and sleep disturbances. As a result, it allows for greater control over previously overwhelming problems. What should be recorded in a PD diary? Medications: name, dose, quantity, time taken, starting date of medication, side-effects, when medication changed and why Mobile periods: "ON" Immobile periods: "OFF" and relation to time of medication. Freezing Involuntary movements: if present describe what they are like; for example, is it a rhythmical shaking or tremor? is it a twisted posturing of a foot or dystonia? Or is it a rocking writhing movement or dyskinesias? Sleep: interruptions (urination, immobility, vivid dreams, involuntary movements) What are the 3 treatment strategies for PD? 1.Preventative 2.Restorative 3.Symptomatic Is PD preventable? To date, there is no definitive preventative treatment that slows or delays disease progression to a significant extent. There has been great debate whether any available agent works in this capacity. Selegiline (Eldepryl®) is a monoamine oxidase B (MAO-B) inhibitor that reduces dopamine metabolism. This drug has mild symptomatic effects and there is some evidence to suggest it actually delays the progression of the disease. However, this point is still hotly debated. Recent publications monitoring the long-term follow up of patients in a study suggest that there is no long-term benefits of using selegiline. The role of Vitamin E remains to be clarified. To date, there is no convincing evidence that it slows or halts the progression of PD. Soon a study will commence to determine whether rasagiline will be effective in slowing the progression of parkinson's disease. This drug resembles selegiline in that it blocks monoamine oxidase type B (MAO-B) in the brain and therefore may decrease the occurrence of free-radical (electron) damage that may be the cause of the death of dopamine producing brain cells which results in PD. What is restorative therapy? Restorative therapy is a concept, currently being tested, which involves neural implantation and the use of growth factors. These new treatments may restore tissue or prevent ongoing loss. Growth factors are proteins, normally present in the body, that control cell growth and specialization. Researchers are studying a variety of these substances to see if they are safe and effective in the treatment of PD. Presently five centers in North America are studying Glial cell-line derived neurotrophic factor (GDNF) to see if this is safe enough to be administered into the spinal fluid (liquid which surrounds the brain and spinal cord) in PD. If it is safe, another study will soon begin to determine its effectiveness in altering the course of PD. Another substance which has received a lot of press is GPI-1046. This drug is another substance which affects cell growth and survival. This agent has only been studied in animals and on cell cultures. It remains highly experimental and much more research must be done to prove its safety and effectiveness in humans. Transplantation of neural tissue has been ongoing since the 1980's. The most recent transplant operation utilizes brain cells acquired from aborted human fetuses, requiring eight fetuses per patient treated. Although promising, the logistics of this treatment make its large-scale implementation near impossible. What is symptomatic therapy? Symptomatic therapy improves symptoms and is not a cure. The treatment of PD is primarily directed at improving the quality by diminishing symptoms. If symptoms are mild, causing minimal disability, it is reasonable to consider a trial of either anticholinergics or amantadine. However, if the patient has any disability, or requests more definitive symptomatic therapy levodopa/carbidopa (Sinemet®) or a dopamine agonist is often used. The initial dose should be low and it should slowly be increased ("Start low and go slow"). Each patient responds differently to the various medications and dosages. Time, disease progression, and other external factors often require dosage to be adjusted. 1.Anticholinergics Medications such as trihexyphenidyl (Artane®), procyclidine (Kemadrin®), and benztropine (Cogentin®) can help diminish rest tremor and slowness. The dose should be started low and increased slowly. Unfortunately, treatment is often accompanied by side effects especially in the elderly. Possible side-effects include: dry mouth, blurred vision, constipation, difficulty voiding, confusion and memory loss. These medications should not be used in those with prostate enlargement, glaucoma (increased eye pressure) or confusion. 2.Amantadine (Symmetrel®) Although amantadine's mechanism of action is not well understood some patients get a symptomatic benefit throughout the disease progression. A dose of 100 mg once or twice a day is often used. Side effects include hallucinations, leg edema (swelling), confusion, hallucinations (seeing things) and livedo reticularis (mottled skin on the legs). Caution should be used in those with kidney failure. It may be helpful in those with dyskinesias. 3.Levodopa Carbidopa/levodopa (Sinemet®) remains the most effective symptomatic medication for PD. Many believe that those individuals who do not get an improvement in symptoms with levodopa (using high doses in some cases) makes the diagnosis of PD less likely. Levodopa is absorbed from the gut and enters the blood stream then the brain where it is converted to dopamine by dopa decarboxylase in remaining dopamine neurons of the substantia nigra. These nerve cells store dopamine until they are stimulated to release it. Dopamine then acts on proteins called dopamine receptors which are located on other nerve cells. Thus, taking Sinemet® helps restore (but not cure) dopamine communication which is important in performing movements. Each Sinemet® pill contains carbidopa in addition to levodopa. It is the carbidopa which reduces some of the side-effects of levodopa. Carbidopa blocks peripheral dopa decarboxylase which reduces nausea and allows more levodopa to get into the brain. A typical tablet of Sinemet® is 100/25; meaning there is a 100 milligrams of levodopa combined with 25 milligrams of carbidopa in a tablet. Many individuals require 75 milligrams a day of carbidopa to block side-effects of levodopa such as nausea, vomiting and lightheadedness. However each person is different and there is no minimum recommended amount of carbidopa that has to be consumed a day. There are many unanswered questions about levodopa. First, is whether levodopa is harmful in the long run. Second, is whether an advantage exists in using the sustained-release (more expensive) form of Sinemet® over the regular form. Doses: Most patients start on a low dose such as ½ tablet of Sinemet® 100/25 (levodopa/carbidopa ratio) and it is slowly increased to where the patient is taking ½ - 1 tablets 2-3 times per day. For fast onset of action a dose of Sinemet® can be chewed or placed under the tongue where it is absorbed quickly. Later in the course of the disease, sustained release Sinemet® may be advantageous in treating increased unpredictable fluctuations in mobility. The CR form may be helpful at bedtime to maintain good mobility and prevent "OFF" periods that may result in frequent trips to the bathroom to urinate. The regular carbidopa/levodopa may be more helpful to patients with more predictable onset of action. As the disease progresses, development of fluctuations in mobility occurs (good "on" mobile periods and bad "off" immobile periods). More frequent, smaller doses of levodopa can be given, especially if the patient develops peak-dose dyskinesias. For example some individuals experience wearing off 5 hours after a dose should take their doses 4 ½ hours apart before the effect of the last pill is gone. Liquid Sinemet (1000 mg carbidopa/levodopa in 1 liter water with 2 grams ascorbic acid) is sometimes helpful in advanced cases because patients can take an exact number of milligrams in a certain number of milliliters of fluid every 45-90 minutes. This is cumbersome however, and usually not tolerated in the long-term. Side-effects of Sinemet® can often be addressed by taking the pill with food or by taking additional carbidopa (Lodosyn®) which is provided by Dupont. If these strategies fail to decrease nausea domperidone (motilium®) may be helpful. Ten or 20 milligrams of domperidone, which is made and shipped from Canada, is taken 30-60 minutes before scheduled doses of Sinemet®. If lightheadedness occurs with Sinemet®, common sense should be employed to prevent alterations in blood pressure that occur when getting up suddenly. Hot showers and excessive amounts of alcohol should also be avoided. Additional information is also available in the section on light-headedness. 4.Dopamine agonists Dopamine agonists are medications which work directly on brain cells and act like dopamine. These compounds do not need to be taken up into dopamine producing neurons in order to act. They bypass two steps of levodopa/carbidopa which requires that levodopa be taken up into brain nerve cells and then converted into dopamine. Dopamine agonists also last hours longer than levodopa. Also, there is some evidence that dopamine agonists may be better in the long run for dopamine neurons, but this is controversial. For these reasons dopamine agonists have been used increasingly in the treatment of PD. Unfortunately, the effects of the available dopamine agonists used alone are often less effective than levodopa. Thus, they have been used primarily in combination with levodopa in patients not deriving enough benefit from levodopa, or those who have developed motor fluctuations and dyskinesias. The side-effects of agonists are similar to those of levodopa/carbidopa and include lightheadedness, confusion, nausea and increased dyskinesias. The dose of an agonist needs to be adjusted to the point of optimal benefit without disabling side-effects. There are currently 3 commercially available agonists: bromocriptine (Parlodel®) and pergolide (Permax®) and Pramipexole (mirapex®). Pramipexole (Mirapex®) is one of the recently developed agonists which may be used in early PD or later when patients require medications in addition to Sinemet®. This medication may also alleviate depression in some patients. Ropinirole (Requip®) is the other new agonist which will soon be available on the market. Whether or not these new dopamine agonists will provide any additional benefit over Permax® and Parlodel® remains to be seen. 5.COMT Inhibitors Catechol-O-methyltransferase (COMT) enzyme inhibitors will soon be approved by the FDA for use in PD. COMT is one of the two enzymes that degrades dopamine, the other being monoamine oxidase (MAO) which is inhibited by Selegiline. By blocking COMT with an inhibitor less levodopa is degraded and more gets absorbed into the blood stream and enters the brain where it is converted into dopamine. COMT inhibitors as a result improve the duration of mobile periods (or "ON" time) and decrease immobile or "OFF" periods. Side effects seen with these medications are dyskinesias, hallucinations, and nausea. The two COMT which will soon be available are tolcapone (Tasmar®) and entacapone (Comtan®). 6.Selegiline (Eldepryl®) Selegiline (Eldepryl®) is a monoamine oxidase (MAO) type B inhibitor which was thought to slow the progression of Parkinson's Disease. However, an international study involving over 800 patients failed to show that selegiline changed the course of PD. Selegiline does provide a symptomatic benefit from its blockade of the enzyme MAO which breaks down dopamine. Typical doses of selegiline is 5 mg twice a day. Night time use of selegiline is to be avoided as it may alter sleep so most take this medication in the morning and afternoon.