Dancing, dystonic, discombobulated, distraught these are all ways people with Parkinson’s feel when contemplating the possibility of a life with dyskenesias after the initial shock of receiving a diagnosis. Yet, the reality is very different in my experience and to those who have studied dyskenesia epidemiology. Patients have been so fearful of Levodopa to the point of either avoiding medications all together or worse seeking help from a physician thus prolonging their diagnosis and making their disease symptoms worst and decreasing their chances for a good quality of life. Even when patients agree to start medications some have had have great trepidation in increasing the doses or stayed only with Dopa agonist despite severe side effects as some of you might have read the story of a young man with PD who was afraid of starting Levodopa compounds so even though he was experiencing severe side effects in the form of unprecedented gambling with the Dopa agonist, he continued to take the point of almost losing everything including his marriage. It was until he was on the verge of losing it everything that he cherished that he reluctantly agreed to stop taking the Dopa agonists and go on Levodopa to find out it made all the difference in the world. He is now putting back his life together and his symptoms seem to be better controlled according to his blog. Few things that might help you as a patient or caregiver decide which path to take early on when deciding on agonists vs. Sinemet or a Levodopa compound by whatever name you may know it in your country. First, remember Levodopa is your friend NOT your enemy! As I have stated in previous blogs and according to all of the new literature release on the subject- Levodopa is both neuroprotective and neurotrophic. By starting early treatment with this compound in the disease can actually be extremely beneficial since it appears to retard disease in ways that agonists do not. But, like I mentioned in my previous blog this like dopa agonists all have their own unique side effects. The key is learning how to balance their intake and when to use what and in what amounts. Dopa agonists have more sleep attacks, blood pressure problems over all as well as more potential for weight gain and water retention and in men gambling and other OCD behaviors but less risk of dyskenesias. As far as dyskenias are concerned it is interesting to note that the concern and fear is highest for all patients men and women alike independent of age at time of diagnosis or at early onset but as time goes on and disease progresses the concern with dyskenesias decreases. Even in the face of dyskenesias, patients who have these do not seem to mind them when asked out right, it is actually the wearing off and suddenly being unable to move that causes the anxiety and trouble when the disease advances. Dyskenesia look bad as do tremors but if you ask a patient are they bother most do not even notice them or care they have them is the spouses or family members or doctors which get concerned. I have set across many patients and friends with varying degrees of dyskenesia all of whom had told me that the movements did not bother them in the least and some were not even aware until I pointed out as to what I was referring to as an involuntary moment known as a dyskenesia. They all then proceed to state however, they did not like the feeling of being stiff and unable to move so rather be like this. Tremors like dyskenesia should be treated only when they are causing problems for the patient and interfering with activities of daily living. The excess movement is okay unless causing severe weight loss or gait balance difficulties…but what worries most physicians about dyskenesia is that once a patient develops these fluctuations, this is an indication of poor medication regulation by the body and brain which can result in sudden wearing off leading to more devastating problems like falling, chocking, and pain. The truth is that the fear is greater than the actual reality once it sets in and although it is believed that 80% of PD patients develop these within 5-10 years after diagnosis, it is important to know that women are more likely to develop this phenomena compared to their male counterparts secondly these can be delayed if agonists are started early or in combination with Levodopa compounds, other risks are younger onset of disease and duration and doses of Levodopa. Since, young onset PD in women seems to have the highest risk of developing dyskenesias, perhaps these are the ones to delay levodopa some and /or give much smaller doses in combination with dopa agonists or use levodopa with COMT inhibitors to prolong or extend the life of Levodopa compounds thus reduce the total amount consumed and decrease fluctuations. This has worked well for me in treating patients in past. Further, maybe we as physicians need to change our early treatment strategy based on gender and potential for dyskenesias weighting the risk compared to other more serious side effects like gambling. Next time you know of someone diagnosed with PD or a physician suggest that you or a friend start taking Levodopa don’t shy or run away from idea simply on the basis of being afraid of developing dyskenesias. Discuss the issues in detail with your physician most importantly the need for combination therapy to maximize medications benefits and minimize side effects of each always taking into account your gender and what we have learned thus far about how different genders respond to different medications. But above all, remember that NO TREATMENT is ONLY going to Harm you in the long run and shorten your independence and DECREASE your Quality of life. So imperfect treatment is BETTER than No TREATMENT at all!!
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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at defeatparkinsons101@yahoo.com contributor http://www.assisted-living-directory.com
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Even at their worst, my dyskenisia never bothered me!! It bothered my hubby and my Doctors and of course the lab technicians when I had imaging scans.