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In a message dated 7/10/00 3:16:49 AM !!!First Boot!!!, [log in to unmask] writes: > > Has anyone experienced action tremors more than at rest tremors? > > I am 36 years of age. I have had parkinson sympoms for 2 years and it > affects the right side of my body only. I experience cog wheel > ratchedness in my wrist and ankle. I also have a great deal of > stiffness in these joints along with fatigue, right side only. I feel > great otherwise. > > Some doctors suggest this is parkinsons others say not. five specialist > in all, no set diagnosis. MRI brain scan shows no abnormality. > > I dont respond to any medication, requip, mirapex, permax, or senemet. > > anyone with similar experience? Thanks, Dave > Dave, yes, my situation is very similar; i have attached a group of frequently asked questions thatnight be helpful Howard CBGD/PSP ------------------------------------------------------------------------------ -- Frequently Asked Questions About Parkinson's Disease From the Experimental Therapeutics Branch, National Institute of Neurological Disorders and Stroke ---------------------------------------------------------------------------- General Questions What are the most common symptoms of Parkinson's disease? What are dyskinesias? What are dystonias? What are motor fluctuations in Parkinson's disease and what causes them? What do "on" and "off" mean regarding Parkinson's disease? What is the Parkinson's diet? Questions About Causative Factors What causes Parkinson's disease? Is Parkinson's disease inherited? Questions About Treatments What are the standard treatments for Parkinson's disease? What are some of the common neurosurgical approaches to Parkinson's disease? Who should get a pallidotomy? Who should get a stimulator? Should I take Vitamin E? What are some of the new drugs which may be coming to market? Why does my Parkinson's medication sometimes not work? How do clozapine, olanzapine, and quetiapine help patients with Parkinson's disease? What can I do for constipation? What about other dietary supplements? Should I take tolcapone in light of the FDA warning? ------------------------------------------------------------------------------ -- What are the most common symptoms of Parkinson's disease? Parkinson's disease has four main features: Rigidity (stiffness), Tremor (shaking), Bradykinesia (slowness initiating movements), and Postural Instability (poor balance). Other symptoms can include freezing, cramps, soreness, depressed mood, memory problems, poor handwriting, disturbed sleep, problems dressing, and speaking difficulties. Fluctuations in movements, particularly with Antiparkinsonian medications, can occur in later stages of the disease. Not everyone with Parkinson's disease will have all of these symptoms. ------------------------------------------------------------------------------ -- What are dyskinesias? With regard to Parkinson's disease, dyskinesias are involuntary movements that occur after the administration of Antiparkinsonian medications. These movements often have a writhing or dancing quality. Two recent studies from ETB suggest that certain medications can greatly improve dyskinesias. For more information, please visit our home page. Many patients with dyskinesias benefit from surgery. To see whether you might benefit from other approaches, please call us for more information at 1-800-362-3479. ------------------------------------------------------------------------------ -- What are dystonias? Dystonias are abnormal fixed (or stationary) postures, such as one's foot turning inward or one's head turning to the side. Dystonias may be painful, though frequently are not. Dystonias often occur in Parkinson's disease, although they may have many other causes. ------------------------------------------------------------------------------ -- What are motor fluctuations in Parkinson's disease and what causes them? Ordinarily, after administration of levodopa/carbidopa (Sinemet), there is a several hour period of improvement of Parkinsonian symptoms. In later stages of Parkinson's disease, the improvement with medication becomes less predictable. There may be incomplete benefit, and new problems may occur, such as dyskinesias and freezing spells. Symptoms can swing markedly from very severe to much improved and back again several times within a very short time frame. While there are many viable theories, the precise cause of motor fluctuations remains unknown. ------------------------------------------------------------------------------ -- What do "on" and "off" mean regarding Parkinson's disease? "On" refers to the improvement in Parkinsonian symptoms after treatment. For example, patients may refer to being "on" when their tremor has disappeared or when their walking is no longer slow. "Off" refers to the untreated condition, such as in the early morning or many hours after the last dose of anti-Parkinsonian medication when Parkinsonian symptoms have returned. ------------------------------------------------------------------------------ -- What is the Parkinson's diet? Many Parkinsonian patients benefit from deferring protein intake until the evening meal. This phenomenon is due to the fact that certain amino acids, the components of proteins, compete with levodopa for metabolism in the brain. Therefore, all medications for Parkinson's disease lose some effectiveness if taken with protein. If you are interested in a Parkinson's diet, you should consult a dietician to ensure that you receive adequate nutrition, as each person's dietary protein requirements vary. ------------------------------------------------------------------------------ -- What causes Parkinson's disease? Parkinson's disease has no known cause. Most researchers feel that Parkinson's disease results from the interplay of multiple factors, both genetic and environmental. Parkinsonian symptoms can be due a toxin, namely MPTP (N-Methyl-4-Phenyl-1,2,3,6-TetrahydroPyridine), certain medications, head trauma, strokes, and other neurological conditions. ------------------------------------------------------------------------------ -- Is Parkinson's disease inherited? Parkinson's disease is more common in relatives of patients with Parkinson's disease than in the general population, which suggests some genetic component. In at least two large European families, a Parkinson's gene has been discovered. This gene appears to be necessary to have the disease. However, this gene has not yet been linked to the majority of Parkinson's disease cases. ------------------------------------------------------------------------------ -- What are the standard treatments for Parkinson's disease? Most patients in the USA with Parkinson's disease are treated with a combination of levodopa and carbidopa (Sinemet). Levodopa is used by the brain to make dopamine, the principal neurotransmitter that is deficient in Parkinson's disease. Carbidopa is given to block some of the side effects that can occur from levodopa. Other anti-Parkinsonian medications mimic dopamine's effect in the brain; these types of drugs are called, "dopamine agonists." Two of the commonly prescribed types of dopamine agonists are pergolide (Permax) and bromocriptine (Parlodel). Two newer dopamine agonists are pramipexole (Mirapex) and ropinirole (Requip). Amantadine (Symmetrel) may mimic dopamine effects as well as increase the release of dopamine. Amantadine has other, more complex actions which may also be important for Parkinson's disease patients. Selegiline (Eldepryl or Deprenyl), another type of anti-Parkinsonian medication, prevents existing dopamine from being destroyed by normal metabolism. Tolcapone (Tasmar) is a newly approved medication which also prevents existing dopamine from being destroyed by normal metabolism. However, selegiline and tolcapone act through different biochemical pathways. Certain medications are directed specifically against tremor. These medications are generally blockers of acetylcholine, another neurotransmitter. Common medications in this class include trihexyphenidyl (Artane), benztropine (Cogentin), diphenhydramine (Benadryl), and biperiden (Akineton). Parkinson's patients with fluctuations in their response to anti-Parkinsonian medications often benefit from a low protein diet as well. Ordinarily, the total protein content of breakfast and lunch is restricted to under 5 grams, and the remaining daily protein requirement (usually 50-100gm) is eaten after 6pm. ------------------------------------------------------------------------------ -- What are some of the common neurosurgical approaches to Parkinson's disease? Many neurosurgical approaches are available for Parkinson's disease. Common procedures include pallidotomy, thalamotomy, and thalamic deep brain stimulation. Experimental procedures include deep brain stimulation of the subthalamic nucleus and fetal transplantation. Pallidotomy and thalamotomy involve the ablation of certain areas of the brain believed to contribute to Parkinsonian symptoms. The procedure is usually done with the patient awake, using guidance by stereotactic imaging. Deep brain stimulation involves the placement of electrodes into the brain which are connected to a pacemaker device that is usually implanted in the chest. Tiny electrical impulses are sent to areas of the brain that affect Parkinsonian symptoms. Fetal transplantation involves the placement of fetal neural cells into the area of the brain where dopamine is deficient. A recent study has shown mixed results. ------------------------------------------------------------------------------ -- Who should get a pallidotomy? At this time, pallidotomy should be considered if there is inadequate improvement with anti-Parkinsonian medication, and if there are prominent dyskinesias or other motor complications from anti-Parkinsonian medications. Consult your neurologist if you think that you might benefit from pallidotomy. ------------------------------------------------------------------------------ -- Who should get a stimulator? Many patients with an inadequate response to traditional anti-Parkinsonian therapy may benefit from the placement of a deep brain stimulator. At this time, severe tremor is the only FDA approved indication for a stimulator. Additionally, some patients with early onset Parkinson's disease (symptoms before age 40), who may be more susceptible to the side effects of Sinemet, may be good candidates for this and other neurosurgical approaches to Parkinson's disease. If you think that you may benefit from a stimulator, you should consult your neurologist. ------------------------------------------------------------------------------ -- Should I take Vitamin E? There is little clinical evidence that any vitamin supplements help patients with Parkinson's disease. Circumstantial evidence suggests that oxidative processes contribute to cell death; however, whether antioxidants, such as vitamin E, can prevent cell death due to Parkinson's disease is uncertain. Therefore, vitamin supplements are not routinely recommended for patients with Parkinson's disease. ------------------------------------------------------------------------------ -- What are some of the new drugs which may be coming to market? Entacapone (Comtan) is a COMT blocker similar to tolcapone (Tasmar) which may come to market in the future. Cabergoline is a new dopamine agonist which has a longer duration of action than the currently available drugs in this class. Cabergoline is currently used to treat certain endocrine disorders, and is not specifically approved for Parkinson's disease. Many other drugs continue to be tested. ------------------------------------------------------------------------------ -- Why does my Parkinson's medication sometimes not work? Many factors influence the effectiveness of anti-Parkinson's medication. A major factor is protein intake, which often causes medication to be less effective after a meal. Additionally, many Parkinson's patients have bowel dysfunction that affects the absorption of levodopa or other medications. Some medications which are given for sedation or to prevent vomiting such as haloperidol or metoclopramide block the action of levodopa, and can cause Parkinsonian symptoms. Your doctor should be made aware of your Parkinson's disease before any new medications are prescribed. Many patients notice that crushing regular (not CR) Sinemet helps to improve their response to Sinemet. Generally the effect is faster, but may also be somewhat shorter. Sinemet can be easily dissolved in ginger ale. ------------------------------------------------------------------------------ -- How do clozapine, olanzapine, and quetiapine help patients with Parkinson's disease? Some patients with Parkinson's disease are unable to tolerate L-dopa due to intolerable psychiatric side effects, such as hallucinations (sensing things that are not actually present), paranoia (unjustifiable suspicion), or confusion. These patients often benefit from atypical neuroleptic medications such as clozapine, olanzapine, or quetiapine. In contrast to "typical" neuroleptic agents, these drugs can have a beneficial effect on Parkinsonian symptoms, as well as an anti-psychotic effect. Traditional neuroleptic medications are usually avoided in patients with Parkinson's disease due to intolerable effects on movement. ------------------------------------------------------------------------------ -- What can I do for constipation? Constipation is a very bothersome symptom for many patients with Parkinson's disease. The best long term treatment is to increase fiber and fluid intake. Simple things such as eating more fruits and vegetables are best. Bran cereals and fruit juices are also very good, although you should be careful about adding milk to your cereal due to the protein content. Commercial psyllium items such as Fibercon, Konsyl, Metamucil, or Mitrolan can also be helpful. Methylcellulose compounds such as Citrucel also act to increase bulk. Note that some of these compounds contain a lot of sugar. Docusate compounds such as Colace or Surfak are marketed as stool softeners, and can be added to the above therapies. It is best to avoid laxatives such as Milk of Magnesia, Cascara, or senna except in emergency situations, as their effectiveness tends to wane with continued use, and side effects can be more severe. ------------------------------------------------------------------------------ -- What about other dietary supplements? Many dietary supplements have become popular due to isolated reports of effectiveness, generally in poorly designed studies. At this time, there is insufficient information to make a general recommendation on these compounds. ------------------------------------------------------------------------------ -- Should I take tolcapone in light of the FDA warning? Some patients taking tolcapone have developed serious liver toxicity. Tolcapone remains a useful medication for some patients with moderate to advanced Parkinson's disease. Under the new FDA guidelines, blood tests will be required to monitor for the development of liver problems. ------------------------------------------------------------------------------ -- This page will be updated periodically. ------------------------------------------------------------------------------ -- To return to top of page For information about Parkinson's disease research at the Experimental Therapeutics Branch ------------------------------------------------------------------------------ -- Last modified May 9, 1999