WE MOVE - Parkinson's Disease - Web Chat Transcript 9/30/1999 <http://www.wemove.org:/par_pdwc9_30_99.html> On September 30, 1999, WE MOVE hosted a Parkinson's disease Web chat "Parkinson's Disease: Understanding Your Treatment Options" at AllHealth on America Online. This informative chat offered a unique opportunity to learn more about living with Parkinson's disease as well as current treatment options. AH Moderator: Welcome to the Parkinson's disease Web chat, the fifth in a series of online conferences about movement disorders. Tonight's conference is presented by WE MOVE through an unrestricted educational grant from Athena Neurosciences. WE MOVE is a not-for-profit organization dedicated to increasing awareness of movement disorders among health care professionals and the public. Parkinson's disease (PD) is a neurological movement disorder associated with slowed movements, tremor, rigidity, and postural instability. PD affects at least 750,000 people in the United States. While PD most commonly affects people beginning in their 60s, it can occur as early as age 20, and as many as 10% of cases occur before age 40. AH Moderator: This evening we are proud to have in attendance two leading experts in the treatment of Parkinson's disease: * Dr. Kapil Sethi, of the Department of Neurology at Medical College of Georgia, in Augusta * Dr. Mark Stacy, of the Barrow Neurological Institute in Phoenix, Arizona Dr. M Stacy: It's a pleasure to be here :) Dr. K Sethi: I am delighted to be here. I hope this is informative and educational for everyone. Dr. M Stacy: We are ready for your questions. AH Moderator: How do you make the diagnosis of Parkinson's disease? Dr. M Stacy: The diagnosis of PD is difficult because there are really no confirmatory tests. The diagnosis is made on clinical findings, and as neurologists we look for resting tremor, slowness of movement (bradykinesia), stiffness of the limbs (rigidity) and walking difficulty. Sometimes a neurologist will use a response to an anti-Parkinson medication as a "confirmatory" test to assist in diagnosis. AH Moderator: I heard that Dudley Moore was diagnosed with Progressive Supranuclear Palsy. Is this a cousin of PD, and what does this mean? Dr. K Sethi: Yes, when you see someone with the clinical features resembling Parkinson's disease, there are several other conditions to consider. I call them the "bad brothers" of Parkinson's. There are other clinical findings that may help differentiate these conditions of Parkinson's disease. In general, these diseases do not respond well to therapy. In PSP, eye movements are impaired early on. Patients cannot look down. AH Moderator: My father and brother had PD. Does this increase my chances of getting the disease? Dr. M Stacy: The genetics of PD are not yet well understood. There are 4 large families who have PD in several generations, and a gene associated with PD has been isolated in these 4 families. Although we frequently see PD in relatives in our clinic, if you do not belong to one of these 4 families we cannot say you definitively carry a gene for PD. However, there are a number of trials in which we are looking for family members with PD, to see if we can isolate another gene for this condition. Although it is my suspicion that having a family member with PD increases your risk, this not proven. If anyone wishes to participate in a genetic study they may contact the NIH at http://www.nih.gov. AH Moderator: What is the relationship between essential tremor and Parkinson's disease? Dr. K Sethi: The relationship between essential tremor and Parkinson's disease is controversial. While some believe that Parkinson's disease is more common in patients with essential tremor, others believe any occurrence of these two diseases is merely coincidental. It is very common for physicians to misdiagnose patients with essential tremor and Parkinson's disease and vice versa. Unfortunately there is no definitive test for either of these two conditions. The diagnosis can only be made by a neurologist with expertise in movement disorders. AH Moderator: I've been newly diagnosed with PD. How will I know when I need to start taking medication, and what will my choices be? Dr. M Stacy: Beginning medications in PD is dependent on a patientÕs relationship with his/her physician. If a patient is having difficulty with employment or other daily activities, the initiation of anti-PD therapy would be quite reasonable. There are a number of choices for treating symptomatic PD, but most parkinsonologists would usually begin with a dopamine agonist or levodopa. The decision regarding which type of drug to use is most often dependent on the patient's age and degree of disability. In a young patient without balance difficulties a dopamine agonist such as Mirapex, Permax, or ReQuip would most often be used. In an older patient with balance difficulties Sinemet or Sinemet CR would be used. Dr. K Sethi: In some patients with mild symptoms, Symmetrel may be used. AH Moderator: Would you please comment on combining many PD medications? Dr. K Sethi: It is perfectly appropriate to combine different medications used to treat PD. For example, if one starts with a dopamine agonist and symptoms break through, it is logical to add low doses of Sinemet or Sinemet CR. Also if a patient on Sinemet develops abnormal movements (dyskinesia), then it is logical to decrease the Sinemet and add an agonist. There are other situations where other combinations of drugs are necessary. Dr. M Stacy: I agree. In my practice, the majority of patients who have been treated for PD for more than 3 years are on multiple medications. AH Moderator: I read a lot back and forth that Sinemet or levodopa can be toxic. Is this true? Dr. M Stacy: The question concerns levodopa or Sinemet and whether it hastens the progression of PD. In the 1970's, when carbidopa/levodopa became available, it was suggested to use 750 milligrams of levodopa per day. At this dosage many neurologists noticed side effects from Sinemet. Most often these side effects included "wearing off" and dyskinesias. These side effects led to an assumption that Sinemet was toxic to the nervous system. Increasingly, investigators believe that levodopa may not be toxic to the nervous system. We are now more concerned about limiting motor fluctuations, such as "wearing off" and dyskinesia. In the last year, the NIH has sponsored a study looking at early levodopa and PD to assist in answering the question of levodopa toxicity. AH Moderator: My mother has PD. She's on Sinemet and pergolide. She can't get a good night's sleep. She's waking up every hour. Is this the drugs? Is this the disease? What can she do? Dr. K Sethi: These problems are very common in Parkinson's disease patients, as well as normal elderly. PD patients may have difficulty falling asleep because of tremor and stiffness and may wake up repeatedly because of difficulty turning or jerking of legs. These problems may in some cases be helped by medication, but in some patients medicines can cause sleeplessness during the night and excessive sleepiness during the day. Your mom maybe taking cat naps during the day, and if so, it's extremely important to keep her active and awake throughout the day. If you observe closely, you may find her dozing off repeatedly. Both Sinemet and pergolide can cause sleepiness during the day. Unfortunately there is no antiparkinsonian drug that does not have this side effect. AH Moderator: My husband is newly diagnosed with PD and is taking Mirapex, which makes him a little drowsy. We've heard about falling asleep at the wheelÑdoes he need to stop driving? Should we consider another dopamine agonist? Dr. M Stacy: Recently there was a report at a scientific meeting that found an increased frequency of sleep attacks in several patients on Mirapex and one patient on ReQuip. While excessive sleepiness is a concern with almost all anti-PD medications, the occurrence of a sudden sleep attack poses a potential personal and public safety risk. In your case, since your husband reports sleepiness on Mirapex, I believe it is reasonable to try Permax or ReQuip. However, in general, I believe that Mirapex, Permax, and ReQuip are very well tolerated. These do not usually require any adjustment in patients doing well. I have not advised my patients to discontinue driving when starting a dopamine agonist but it is important to know of this potential problem. AH Moderator: I've been taking Tasmar since it came out without any indication of liver problems. Is there any reason to stop taking it? Are there any new COMT inhibitors coming to the market? Dr. K Sethi: Tasmar is a very useful drug used to extend the duration of action of Sinemet, by blocking its degradation outside the brain by an enzyme called COMT. Unfortunately in a few patients, it causes severe liver damage. The FDA mandates biweekly liver function testing in patients receiving Tasmar. Since the institution of this mandate, there have been no new cases of severe liver damage. Therefore, in an appropriate patient, I still prescribe Tasmar, and if you have no indication of liver damage after using Tasmar for over a year, I would advise you to continue, and get your liver functions tested. A new COMT inhibitor, called Comtan, is pending approval by the FDA. The liver function monitoring will not be required to use that agent, to the best of my understanding. WE MOVE - Parkinson's Disease - Web Chat Transcript 9/30/1999 <http://www.wemove.org:/par_pdwc9_30_99.html>