Doctors' Answers to "Frequently Asked Questions" - Parkinson's Disease

These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

Parkinson's Disease Treatment [posted 1/12/99]
Question: I am asking this for my mother who is 56 years of age and was diagnosed for Parkinson's 5 years ago. She had been on a combination of Eldepryl, Cogentin and Lorazepam for the last year or so and, while experiencing some discomfort, was still able to lead a relatively normal life. She recently visited the Mayo and, per their advice, switched to Sinemet to try and decrease her level of discomfort. She was up to 12 tablets (25-100) / day and has had an extremely bad reaction. She is no longer able to function at anything like a normal level and is in great discomfort. Her regular doctor is lowering her level of Sinemet slowly (9 a day now) and has begun trying her on Mirapex as well. Should my mother decide that her previous (pre-Sinemet) level of discomfort was something much more acceptable, and can she go back? Once you have begun Sinemet treatment is there a need to stay on that track and work solely with dosages and other drugs?

Answer: No, you can stop it. As to the discomfort versus the sinemet, that is her value judgement.

Pramipexole / Mirapex for Parkinson's Disease [posted 12/02/98]
Question: I'm looking for information on Pramipexole. It is used for Parkinsons.The drug name is Mirapex.

Answer: Pramipexole is a drug used in Parkinson's Disease because of its partial agonist characteristics at the D2 receptor site. This class is used due to less extra-pyramidal effects.

Parkinson's Disease Treatment [posted 7/27/98]
Question: I have had Parkinson's for the past seven years and have just started to progress to the point of disabling me. Listening to President Clinton on TV, he mentioned that there is a new breakthrough in Parkinson's. They now know the cause and have protracted a cure. I have not seen or heard anything in the media. Would you provide me with as much information as possible.

Answer: I didn't hear the speech, so I'm not sure what he is referring to. I'd write the White House and ask for information, I'm sure they would be happy to supply it.

Parkinson's Disease - Fetal brain grafting
Question: Based on the obstacles that are hindering the field of fetal brain grafting, about how long will it be until fetal brain grafting becomes readily available to all Parkinson’s Disease Patients?

Answer: This is a political problem. Probably when the right wing gets Parkinson’s.

Depression and Parkinson’s
Question: I have Parkinson's and took medication for depression. First I tried Zoloft and had trouble sleeping and stiffness in the joints. Doctor put me on Paxil , and I gained weight while on both medications. Very disturbing to me. Tremor increased. I have stopped both medications. Hoping to lose weight. Also the tremor was increased by the drugs. I am feeling depressed, stressed, tired, lack of concentration. Is there an antidepressant that does not cause these side effects?

Answer: Each class of antidepressants has certain typical side effects. Within each class there is usually variability in the side effects. Zoloft and Paxil are essentially in the same class of serotonin reuptake inhibitors. I would try a completely different class like Wellbutrin. Also, Serzone might be of use.

Parkinson’s Disease - hip joint pain
Question: My left hip socket is in pain. Exercise helps, but is it caused by the rigidity? It never seems to relax. Sometimes it works pretty good (especially after my personal trainer puts me through my exercises). Except for some loss of dexterity in my left hand and left arm not swinging normally when I walk, I'm doing pretty well. I was diagnosed with Parkinson’s Disease in December 1994 at age 63. I take Eldepryl (5 mg twice per day). I recently added 1/2 tablet Sinemet 25/100 twice a day. I tried a whole tablet, but I felt so bad and nausea was bad that I dropped back to 1/2 tablet. Would Pramixapole, Pardodel help if added to Eldepryl? I really like Eldepryl because it has no side effects for me and I can take it on an empty stomach.

Answer: Parkinson's Disease commonly affects one side of the body over the other. The question is whether the rigidity would be improved with extra medications vs. the side effects. Amantadine might be helpful with few side effects. Pardodel might also be, but will probably cause nausea. There are two or three new drugs coming out in Parkinson’s Disease, which should be available in 4 to 6 months. However, I'm not sure of the side effect profile without using them.

Parkinson Skinpatch
Question: on the Drug InfoNet FAQ page for Parkinson’s Disease, there is a question which asks about a skinpatch for Parkinson's disease. Your answer says to send you more information and you would check it out. Well, I found the following on another WWW page somewhere else and it states:

"After 3 years of research, Virginia Commonwealth University physicians are optimistic that a new skin patch which secretes a steady stream of dopamine-line medication into the bloodstream could be used to treat Parkinson’s Disease more effectively. Neurologist Vincent Calabrese points out that his study was small and results only preliminary and more testing is needed."

Answer: I would contact the physician at the VCU medical center. This has not been released yet, although it is promising. There will be two new treatments for Parkinson’s disease due out this summer, which may make older drugs nearly obsolete.

Parkinson's Disease
Question: I understand that as Parkinson's Disease progresses, more medication is required to control symptoms effectively. Is this solely because increased symptoms require more medication? Is it because the body needs higher doses as it desensitizes to the therapeutic effect? Or is it some combination of these two? Would it be advantageous to postpone using medication for as long as possible so that it will continue to be effective longer at lower doses, or is this fallacious reasoning?

Answer: The reason that some patients have more symptoms with time is that there are more nerve cells that die off. This is the primary reason that more medication is needed. However, if you think of the nerve cells that die off as being like a factory processing raw material(Sinemet) and turning out a product (Dopamine) then you can see that once the number of factories gets sufficiently reduced, and that simply giving it more Sinemet may not help. Also, there is the problem of receptor hypersensitivity, which means that the nerve cells that work with the dying population change to become more receptive to diminishing amounts of dopamine, and therefore, any slight or abrupt change in dopamine levels tends to produce a major change in these secondary nerve cells. This may, in part, lead to the "on - off" phenomenon. For these and other reasons, some neurologists tend to hold off using Sinemet until there are sufficient symptoms to warrant treatment. Also, there is a tendency to use other drugs, such as Parlodel or Permax, which act directly on these secondary nerve cells and do not rely on the pre-processing that is done by the cell population that is dying off. Therefore, it may be wise to hold off on using Sinemet until symptoms become bothersome. However, if you let the symptoms take over the patient's life, then this is not good either. It is also worth noting that some patients find that the first 6-18 months on Sinemet to be very gratifying and some have had sustained benefit from small doses of Sinemet, so I would not advise becoming overly afraid of Sinemet.

Parkinson's Disease
Question: Is there any connection to Parkinson's in relation to your nerves? I have had a problem with my nerves - I can't think clearly and I can't relax even when I am doing something I enjoy. It has, at times, even interfered with my learning now, and possibly earlier on in my life. The problem appears to be more frequent lately. I was newly diagnosed with Parkinson's a year ago.

Answer: It is possible that your problems with 'nerves' could be a symptom of Parkinson's, but without knowing more about your case, medications and other medical history I would not feel comfortable excluding other possible problems. You should mention how you feel to your doctor and if you haven't seen your neurologist recently you should use this as a reason to make another appointment to discuss these symptoms.

Parkinson's Disease Information
Question: My doctor thinks I have Parkinson's. I am taking L-Dopa in rather small amounts. The medication has restored my balance. At this point I have no tremor any place in my body. I am able to walk rather normally. I have degenerate arthritis in my lower back. Do you have any suggestions for me. I am 71 years old.

Answer: I would suggest that you become knowledgeable about your condition and about the things you can do to improve your overall health. A good place to start is with the different Parkinson's Disease foundations that should be able to send you literature and supply you with reading lists:

         1) American Parkinson Disease Assoc.                      
         1250 Hylan Blvd.                                                     Staten Island, NY 10305                                     
         

         2) National Parkinson Foundation, Inc.                      
         1501 NW 9th Ave., Rm. 4013                                
         Miami, FL 33136                                           
                                                                        
         3) Parkinson's Action Network
         818 College Ave., Suite C                             
         Santa Rosa, CA 95404                                    
                                                                   

         4) Parkinson's Disease Foundation                
         710 W. 168th St.                                  
         NY, NY 10032                                           
                                                              
         5) Parkinson's Support Groups of America                 
         11376 Cherry Hill Rd., No. 204                         
         Beltsville, MD 20705                                

         6) Unite Parkinson Foundation and Internation Tremor                      Foundation
         833 W. Washington Blvd.                                     
         Chicago, IL 60607

Parkinson's- Life Expectancy and Quality Question: What is the life expectancy and quality of life for persons afflicted with Parkinson's Disease?

Answer: Parkinson's Disease, like many neurologic diseases, is a disease that is hard to predict. Its usual course is very gradual so that diagnosis is sometimes difficult because of the slow progression. Often it is only after treatment that the family and sometimes ones physician recognizes that the disease has been slowly progressing for several years. Some patients have rapid progression of the disease, other progress more slowly. Generally, the progression is slow. Treatment does not seem to affect the progression although this has been difficult to accurately test. The quality of life is usually affected by the difficulty with motor activity. Falling and difficulty performing usual daily activities usually frustrate the patient and family. About 10-15% of patients will experience dementia with Parkinson's and this will dramatically affect their life. However, most patients do not experience loss of mental ability.

Levodopa w/Carbidopa Eldepryl
Question: My grandfather has been diagnosed with Parkinson's. The drugs that have been prescribed are as follows: Levodopa w/Carbidopa Eldepryl. Looking in different web sites, I have not found any information, pertaining to Parkinson's, that these drugs are used?! I am curious if these drugs help the disease or just relieve some of the symptoms of the disease. What is the most common drug prescribed for Parkinson's. Also, he is a very small man, he has had many re-occurring asthma and bronchitis episodes. Any information would be greatly appreciated.

Answer: Levodopa w/ carbidopa is Sinemet, and is perhaps the most frequently used medication in the treatment of Parkinson's disease. It does not cure the patient of the condition, but it can be very helpful in reducing the symptoms of stiffness, slowness of movement, and tremor. Eldepryl likewise is a very common medication used in the treatment of Parkinson's disease. It is used in hopes of preventing much progression of the disease though this assertion is still somewhat controversial. It has some minimal Sinemet-like action but is used not so much for what it can do for the patient, but rather for its potential to possibly slow down the process whereby nerve cells are dying. Any medication that one anticipates using must be checked for its appropriateness for the situation and whether it would interfere with any other medications that are already being used.

Parkinson's- Emotional Support
Question: I have a close friend with Parkinson’s Disease. He is going to have to quit working because of the debilitative effects of this illness. He is understandably upset about this turn of events. As a kidney transplant patient and a person with a degenerative muscle disease, I do understand how difficult it is to deal with these major life changes. What can I do to provide him with emotional support and add to his feelings of dignity.

Answer: When I am trying to provide emotional support in my practice, I always focus on how I would prefer to be treated. First, I acknowledge that I cannot ever truly understand the feelings if I have not "walked in those shoes". This does not, however, prevent me from feeling empathy. Second, I try to validate any feelings that an individual has. This means accepting without criticism any feeling as OK and valid. This approach will commonly allow an entry into ones emotional side. The most common problem I see is a difficulty by most people to discuss their feelings. This can sometimes be addressed by starting conversations in the "I" mode. That is, a statement like "When I had my kidney transplant I felt very_______". This is an approach that often works for me in my practice.

Parkinson's Treatment
Question: I am early onset PD, 43 years old, diagnosed 4 years, taking Artane and Eldepryl. My tremor is becoming more noticeable socially and writing at work a problem. I worry about starting a levadopa based treatment because of the side effects, eg dysninesia. What options do I have?

Answer: The treatment of Parkinson's Disease has over the years had certain fads; drug holidays, high dose Parlodel. Currently there is much enthusiasm to avoid using Sinemet until it is absolutely necessary. Using Amantadine, Artane and Eldepryl represent ways of treating the Parkinson's patient without using Sinemet. The question that the patient must always answer for the physician is whether these methods work, and are you, the patient, satisfied with the level of treatment? While Sinemet is not good at treating tremor (as compared to the anti-cholinergic) it, nonetheless, has some ability to reduce tremor. Other options for the tremor patient is to explore other anti-cholinergic medications and to be examined to make sure that you have not developed an action tremor which is treated differently.

NADH Treatment and Parkinson's Disease
Question: On an Internet Parkinson's Disease newsgroup, I keep reading about something called NADH. There have been favorable comments from those who've tried it. As a long-term patient with PD, I am very interested in it. Is it "snake oil" or is there something to it? Any info would be greatly welcomed.

Answer: Few literature citations are found in regards to this treatment. NADH is a co-enzyme found naturally in the body. There have been a flurry of reports of its benefits to Parkinson's patients when given intravenously. Of note, these reports seem to come from primarily the Birkmayer Institute for Parkinson's Therapy, Vienna, Austria. A report in 1994 from the Dept. of Neurology, University Hospital, Linkoping, Sweden, found no sustained benefit from this therapy. The reviewer had actually never heard of this therapy prior to researching this topic. I would consider this therapy is as of yet an unproven benefit.

Parkinson's Disease
Question: What is the benefit of waiting for as long as possible to start using Sinemet when the patient is 43 years old? If the patient does start Sinemet how soon can he hope to see results in lessening of the tremor and more fine motor control and increased writing ability?

Answer: Sinemet does nothing to arrest or slow the progression of Parkinson's Disease. In some patients, side-effects develop which appear to be either dose or time-related. These side-effects are usually difficult to treat. Consequently, most physicians delay the treatment of Parkinsons until the tremor is disabling. Once begun, the medication works within one to two days if at the correct dosage.

Skinpatch
Question: I heard that there is a kind of skinpatch which can control the tremor of the Parkinson's disease.Would you please tell me more information about it? Thank you very much.

Answer: I am unaware of any FDA approved transdermal product for the tremor of Parkinson's. For that matter I have not heard of any transdermal product that has been used off of FDA approval for this condition. Send us more information such as a name (product or generic) or the manufacturer and we'd sure be happy to look into it.

Cure/Relief
Question: Is there any cure that has been created to relieve people of parkinson’s disease? Or is there anything that can help to prevent it from continuing it's progress?

Answer: The most exciting treatment in Parkinson's Disease is the use of implantable stimulators in the brain. These send electrical signals to affected areas and can "turn off" the tremor of Parkinson's Disease. It does not seem to affect the rigidity and facial stiffness seen in the disease. New treatments are coming very rapidly in this disease entity.



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