Do you want to know more about Parkinson's? PDF's materials provide information about symptoms, medications, resources & more.
Questions and Answers: Parkinson's Secrets, Myths and Misconceptions
The following questions about Parkinson’s were submitted during a Parkinson’s Disease Foundation PD ExpertBriefing, entitled Parkinson’s Disease and Its Treatment: Secrets, Myths and Misconceptions, which took place in September 2009.
During the event, presenter Melissa J. Nirenberg, M.D., Ph.D., answered many questions from members of the online and telephone audience, but was unable to answer all of the questions due to time constraints. The full answers to these questions now appear below.
If you have not already, watch Dr. Nirenberg’s full presentation now from your home computer.
QUESTIONS AND ANSWERS
Q. Some of the articles that I have read about Parkinson’s disease (PD) research suggest that a possible cure is only years away. With the information that is currently published with respect to treatments, do you feel that this is a myth? Please comment on spinal cord treatment specifically.
A. It is very difficult to predict when a cure for Parkinson’s disease will be identified. Many scientists, because of the large amount of research being conducted world-wide, are hopeful that a cure will be found in the near future. Spinal cord stimulation is being investigated in animal models of PD, but it is too early to tell to what extent it might be a useful treatment in humans; of note, spinal cord stimulation is intended to help the symptoms of PD, and not to cure the disease.
Q. Is it better to delay the use of levodopa as a Parkinson’s treatment for as long as possible for someone diagnosed at 49 years old? I am now 54 years old.
A. Age of PD onset is only one of a number of important factors that should influence the decision about when to initiate levodopa therapy. For this reason, it is important to discuss this issue with your personal physician.
Q. At some point, people with Parkinson’s were told that there is a lesser risk of breast cancer for those living with Parkinson's and a greater risk of melanoma for those that use Sinemet ®. Are either of these claims correct?
A. Compared with people who do not have Parkinson’s disease, people with Parkinson’s have been shown to have a higher risk of melanoma. This is an epidemiological association and the reasons for it are not fully understood. The increased risk of melanoma occurs in people with Parkinson’s who have not yet started treatment with levodopa or other PD medications, and therefore does not appear to be caused by Parkinson’s medications. It has also recently been shown that people with a family history of melanoma have a higher risk of PD than those without, suggesting that melanoma and PD may be biologically related. People with Parkinson’s should therefore be vigilant about having abnormal skin lesions evaluated by a dermatologist.
There is a lower risk of a number of other cancers in people with Parkinson’s than those without. This is particularly true for smoking-related cancers such as lung, bladder and laryngeal cancer, partially because people with PD tend not to have smoked in the past; but it is also true to a lesser extent for other cancers. The relationship between breast cancer and PD is less clear, but several studies actually suggest an increased risk of breast cancer in people with Parkinson’s.
Q. What would cause sudden declines in both mobility and balance, which for me, have then led to falls? I thought PD declined slowly, rather than changing extremely over the course of two months.
A. You are correct – Parkinson’s declines slowly, and not over hours, days or weeks. If PD symptoms worsen precipitously over a short period of time, then it is critical to search for secondary causes for these worsening symptoms. Potential causes for worsening Parkinson’s symptoms may include medication changes (which may be intentional changes or due to medication error), infections (such as a urinary tract infection, cold or flu), other medical problems (e.g., dehydration, problems with the heart, lungs, kidneys, liver, etc.), and/or stress, sleep deprivation, etc.
Q. I have heard that there are multiple “types” of Parkinson’s. Just how many types exist? I don’t shake at all, but I do freeze and lose my balance a lot.
A. Parkinson’s disease is very different from person to person – for example, some people may have a severe tremor, and some may have no tremor at all. Similarly some may have more difficulty with gait and balance than others. There are also “cousins” of Parkinson’s that may have overlapping symptoms but represent a different neurological disorder – your neurologist is the best one to help you clarify your diagnosis.
Q. I’ve been told that exercise is important. How truly important is exercise to a person with Parkinsons?
A. Exercise is extremely important for people with PD – it helps to keep people mobile, keep muscles strong and well-toned, maintain overall health and prevent secondary consequences of immobility. Exercise is also known to improve mood and alleviate symptoms of depression and anxiety, and reduce the risk of development of cognitive impairment in the general population. Recent research has suggested that regular, daily exercise may help to slow the progression of PD, but additional studies need to be done to confirm this.
Q. Do vitamins help people with PD or is this just a myth?
A. It is important for people with PD to eat a healthy, balanced diet to maintain their general health. Adequate vitamin D and calcium intake are important in people with low bone density to reduce the risk of fractures. We still do not know whether there are specific vitamins or supplements that affect the progression of PD – this is an active area of investigation in PD research studies, including current clinical trials.
Q. Has Azilect® truly been approved as a modifying drug for Parkinson’s?
A. Currently, Azilect (rasagiline) is only FDA-approved for treatment of the symptoms of PD, and not as a disease-modifying agent.
Q. When I exercise or I am stressed my hand starts to shake a lot more than it does at other times. I have been told this causes more brain cells to die by stressing my brain and making me shake more. Is this true?
A. What you have been told is not true. Exercise and stress can temporarily increase tremor but there is no associated brain damage or cell death. A short time after the stress is relived or you stop exercising, your tremor will decrease back to baseline. Exercise is very important in PD, so you should continue to exercise even if it temporarily increases your tremor.
Q. Does excess protein interfere with medication absorption? Is a diet available to avoid this?
A. Protein in the diet is a problem for only a small percentage of people living with Parkinson's disease, and only for those taking Sinemet (or other medications that contain levodopa). A very small percentage of people living with Parkinson’s who take levodopa notice a decreased level of benefit from a single dose of that drug when taken just before or with a meal high in protein. For the vast majority of these individuals, simply taking the dose 30 minutes prior to a meal or 45 minutes to an hour after the meal eliminates any problem. If this does not solve the problem, then ask your neurologist to refer you to a nutritionist or a dietitian for further recommendations on how to modify your diet to optimize your medications. But for the vast majority of people with Parkinson’s – particularly early in the disease – dietary protein is not problematic.
Q. Does PD always progress?
A. Parkinson’s disease is always progressive, but the rate of progression is highly variable, and can be very slow in some people. If the symptoms do not increase in severity as time (usually years) passes, then other diagnoses may need to be considered.
Q. I have heard that a history of childhood bedwetting and sleepwalking may indicate increased risk for Parkinson's disease. Is this true?
A. There is no scientific evidence to support this myth.
Q. Is it true that taking Sinemet earlier in PD, decreases the medication’s long term usefulness? Does this apply to higher doses also?
A. This is a myth. Levodopa is highly effective for many years, and its loss of efficacy has more to do with the progression of the disease than with the duration of treatment. Not all symptoms of PD respond to levodopa, and over time those symptoms become more prominent. Also, as the disease progresses, people tend to develop more side-effects from levodopa that can limit its use.
Q. I am taking Mirapex®(pramipexole) and Azilect (rasagiline). When should I switch over to Sinemet? I want to wait as long as possible to switch.
A. There are many different factors that influence the decision about when to initiate levodopa therapy. For this reason, it is important to discuss this issue with your personal physician.
Q. When people with Parkinson’s lose sense of smell, sense of taste and loss of appetite, doesn't this result in weight loss, in contradiction of what you stated in your presentation?
A. People with PD often lose weight prior to the diagnosis of PD, for a variety of reasons such as loss of smell and taste. The weight loss usually levels off once people are on appropriate PD medications. For this reason, ongoing, unexplained weight loss in PD should never be attributed to PD until more serious medical issues such as cancer and depression have been excluded.
Do you have more questions about the causes of Parkinson's? Ask the experts your questions directly using our online form, or call our helpline at (800) 457-6676.