People with young onset forms of Parkinson’s disease (PD) face unique challenges – among them raising children and maintaining partnerships and relationships while coping with a progressive and chronic illness. Of course, these sorts of challenges also occur for older people with PD, but they may be more pressing for those with young onset PD. An older person with PD may not have a young child calling him ‘Dad’ or ‘Mom’ and may not be in the initial and building stages of a sexual and romantic relationship with a partner. People with young onset PD, however, often are just starting families or are still building families and so their challenges are different than those of older people with PD. Recent studies of sexual and relationship satisfaction in couples with young onset PD show that levels of dissatisfaction were prevalent among young onset PD patients. PD patients were similar to their partners in their level of sexual and relationship dissatisfaction. The degree of dissatisfaction did not correlate with disease characteristics. Instead, depression seemed to be fueling the dissatisfaction in sexual and romantic relationships. These findings underlie the importance of treating depression aggressively in people with young onset forms of PD.

_{Source: Wielinski, C. L., Varpness, S. C., Erickson-Davis, C., Paraschos, A. J., & Parashos, S. A. (2009). Sexual and relationship satisfaction among persons with young onset Parkinson’s disease. Journal of Sexual Medicine. [Epub ahead of print]}

The English philosopher, Thomas Hobbes (1588-1679), is best known for his political philosophy, although during his day he was more widely known as a scientist, a mathematician, a translator of the Greek classics (such as Thucydides’ History), and a fierce and passionate writer on religious questions. He developed the ‘shaking palsy’ sometime in his 50s or early 60s…sometime in the mid-1640s. By the 1650s or 1660s, we know he was using secretaries to do his writing as he had lost that ability. He would dictate his works to his secretaries. It is fascinating that Hobbes wrote his most influential works right before the estimated onset of his Parkinson’s disease (PD) and right after onset of the disease. For example, he wrote the De Cive [On the Citizen] (1642) right before the onset of his PD and he wrote his most famous work, Leviathan, in 1650-1651 right after onset of the disease. His disease onset and progression also coincided with some of the most momentous events in English history: The terrible Civil Wars of 1642-1646 and 1648-1651 occurred coincidently with the onset and early progression of his disease. Those civil wars involved the most fearsome forms of religious fanaticism and ended in the execution of the King. Through all of this and with his disease progressing, Hobbes was forced to leave the country for his personal safety and lived in France from 1640 to 1651. It is difficult to travel with PD now in the modern era. Imagine what it was like for Hobbes to travel with the disease in the 1650s – all while seeing his home country engulfed in religious fanaticism of the most extreme and deadliest kind. Did his PD influence his political philosophy? It is impossible to say. The disease, however, clearly did not slow him down intellectually. On the contrary, he produced his best most creative work just when the disease was trying to claim his body.

Some forms of familial Parkinson’s disease are linked to loss of function of the genes called Parkin, or PINK1, but, until recently, it was not understood why. Why did these genetic defects lead to PD in some families? Recent evidence suggests that these genes are important for normal functioning of the mitochondria. Mitochondria are those cellular processes in every cell of your body that produce energy for the body’s functions. The mitochondria produce energy in the form of adenosine triphosate. Cells, particularly cells that produce dopamine, need this energy molecule in order to perform their normal functions. Scientists have long suspected that damage to the mitochondria in your cells can contribute to the onset of PD. When mitochondria are damaged in animals, it can produce a form of parkinsonism. Now scientists have discovered that Parkinson-associated genes like PINK1 and Parkin functionally interact to maintain mitochondrial function. Loss of Parkin or PINK1 function impairs the morphology and activity of mitochondria, which then produce less adenosine triphosphate. Slowly, the pieces to the puzzle are being put together. Already scientists are talking about creating drugs or genetic products that can protect mitochondria and thus treat or ameliorate PD.

_{Source: Lutz, A.K., Exner, N., Fett, M.E., Schlehe, J.S., Kloos, K., Laemmermann, K., Brunner, B., Kurz-Drechsler, A., Vogel, F., Reichert, A.S., Bouman, L., Vogt-Weisenhorn, D., Wurst, W., Tatzelt, J., Haass, C., and Winkelhofer, K.F. Loss of parkin or PINK1 function increases DRP1-independent mitochondrial fragmentation. Journal of Biological Chemistry, 21. August 2009, Vol. 284, Issue 34, 22938-22951.}

One of the hardest symptoms to bear when you have Parkinson's disease is anxiety. Some forms of anxiety in PD are easy to understand. We are anxious over how the complications of PD will affect money and family life—not to mention our own well-being. But there are other forms of anxiety that seem to be an intrinsic part of the disease-not just a reaction to the disease. These intrinsic forms of anxiety can make you feel like you are going crazy. The fear seems irrational and yet uncontrollable. Something horrible is about to happen and I am powerless to do anything about it-or so it feels. Recent studies of anxiety in PD show that up to half of PD patients experience some form of anxiety at one point in their lives. The most common form of anxiety after diagnosis of PD appears to be “Anxiety disorder not otherwise specified”---in other words an anxiety disorder that is atypical and not well studied by the psychiatrists. In short, anxiety disorders of PD are not well understood and because of that they are probably not well treated either. If you are experiencing anxiety, talk to your doctor about it. When fears and worries are shared they lose their hold on us. Its time to bring anxiety disorders of PD out of the shadows and into the realm of rational understanding and treatment.

_{Source:
Gregory M. Pontone, James R. Williams, Karen E. Anderson, Gary Chase, Susanne A. Goldstein, Stephen Grill, Elaina S. Hirsch, Susan Lehmann, John T. Little, Russell L. Margolis, Peter V. Rabins, Howard D. Weiss, Laura MarshPrevalence of anxiety disorders and anxiety subtypes in patients with Parkinson's disease (p 1333-1338). Published Online: May 7 2009 Movement Disorders, Volume 24, Issue 9 (p 1333-1338)}

For years now there have been reports that acupuncture improves Parkinson's disease symptoms including body posture, tremor, and rigidity. Now a recent study in the journal Movement Disorders demonstrates that acupuncture does indeed activate areas in the brain that are normally responsible for movement and that are typically not functioning normally in PD. Specifically the authors used functional magnetic resonance imaging to study brain effects of acupuncture at acupoint GB34—a site traditionally used to improve motor functioning. The investigators found that when the left GB34 acupoint was stimulated, brain activity in the putamen and the motor cortex-two key motor function areas that are impaired in PD, demonstrated a significant correlation with the degree of the enhanced motor function (a finger tapping task) associated with acupuncture treatment in the patients with PD. The findings indicate that acupuncture stimulation can consistently influence those brain regions that are known to be impaired in PD.

In short acupuncture may be construed as a form of deep brain stimulation via systematic stimulation of the skin. It may therefore one day prove to be an effective tool in the battle against PD.

_{Sources:
Lee MS,Shin BC,Kong JC,Ernst E. Effectiveness of acupuncture for Parkinson's disease: a systematic review. Mov Disord 2008; 23: 1505-1515.}

_{Younbyoung Chae, Hyejung Lee, Hackjin Kim, Chang-Hwan Kim, Dae-Il Chang, Kyung-Mi Kim, Hi-Joon Park. Parsing brain activity associated with acupuncture treatment in Parkinson's diseases (p NA) Movement Disorders, Published Online: Jun 16 2009 2:42PM DOI: 10.1002/mds.22673}

Fatigue is a major nonmotor symptom in Parkinson disease (PD) and undermines efforts at coping with the disease. At present there are no known effective treatments for fatigue in PD. Modafinil is a drug originally developed to treat sleepiness and so it seemed reasonable to try it for fatigue in PD. Now a recent study of 19 PD patients who received the drug for several weeks reports only mixed results in terms of the drug’s effectiveness for fatigue. This small study showed that the drug was associated with better endurance performance on a finger tapping task but subjective feelings of overall fatigue did not improve over time. What can we conclude from such an equivocal set of findings. One wishes the investigators had studied more patients before publishing their results so that firmer conclusions could be drawn from their work. But it is difficult to recruit people for these sorts of studies so it was reasonable to publish what they found. Some information is better than none when there is no effective treatment available for this disabling symptom of PD. Modafinil deserve further study.

_{Source:
Lou JS, Dimitrova DM, Park BS, Johnson SC, Eaton R, Arnold G, Nutt JG. Using Modafinil to Treat Fatigue in Parkinson Disease: A Double-blind, Placebo-Controlled Pilot Study. Clin Neuropharmacol. 2009 Jun 10. [Epub ahead of print].}

C.G. Goetz is one of the world's premier Parkinson's disease specialists and he has an avid interest in the history of medicine-particularly the history of the scientific study of the movement disorders. His recent investigations into the treatment of movement disorders at Paris' famed Salpêtrière Hospital has turned up some interesting facts about J.-M. Charcot's work with PD patients. Charcot was one of the most famous neurologists of the 19th century. He trained or influenced many of the best and brightest of the physicians of that century including Sigmund Freud. Charcot claims to have noticed that PD patients slept better and felt better after a bumpy train ride or carriage transport and then surmised that the vibrations caused by these rides had a therapeutic effect of some kind. Charcot developed a vibration chair for patients with PD where patients sat in the chair each day for 30 minutes and then felt better. Another 19th century famous movement disorders pioneer (and colleague of Charcot), Gilles de la Tourette (after whom Tourette's syndrome is named) developed a helmet that vibrated the head on the premise that the brain responded directly to the pulsations. Goetz notes that various forms fo vibratory therapy are in use in various branches of medicine today and he seems to leave open the possibility that vibratory medicine for selected PD symptoms might be worth looking at again today.

_{Source:
Goetz CG. (2009). Jean-Martin Charcot and his vibratory chair for Parkinson disease. Neurology. Aug 11;73(6):475-8.}

Most hospitals with specialized Parkinson's disease programs also have education programs for patients and their families. Sometimes these education programs seem boring and pro forma. only basic information is presented and it is usually stuff patients and their families already know. But all that is changing. Education programs have been evaluated by the scientists and the scientists have begun forcing changes in the content of these programs so that patients and their families can actually learn something from them. The new and improved programs typically consist of eight weekly sessions of 90-minute duration with content covering very practical issues of symptoms, medications, insurance, support networks and the like. Studies show that these educational programs improve quality of life for both patients and caregivers so please consider availing yourself of the ones in your area.

_{Source:
A'campo LE, Wekking EM, Spliethoff-Kamminga NG, Le Cessie S, Roos RA. (2009). The benefits of a standardized patient education program for patients with Parkinson's disease and their caregivers. Parkinsonism Relat Disord. Aug 10. [Epub ahead of print]}

Having many years struggled with a chronic disorder, I am now fairly confident that one of the most important things I must do each day is to remind myself that the disease does not own me--that I am not my disease. I am sure that most people with Parkinson's disease have to do the same. Although the disease may invade virtually all parts of my life, it nevertheless cannot touch me--who I really am--unless I give my consent--unless I allow it to do so. The disease can limit me, hurt me, even cripple me but it cannot break me or bring me to give into despair. It can tempt me, sorely sometimes, with despair, but it cannot make me give up to despair. To keep the disease at bay, to keep it from 'owning me', alls I have to do is to remind myself on a daily basis that I am not my disease. it is a simple act of with-holding my consent to the disease's invitation to despair. A smiple act yes, but not an easy thing to do each day. I need all the help I can get from as many sources as i can muster. But each day alls I really need to do is to remind myself I am not my disease and then it can never really control me. perhaps that is one of the best things we can do for one another--to remind one another that we are not reducible to a disease-no matter how serious or severe that disease is. We are always bigger than anything that can happen to us.