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PARKINSON RESEARCH FOUNDATION 5969 Cattleridge Blvd., Ste. 100 Sarasota, FL 34232 941-870-4438 www.parkinsonresearchfoundation.org

WINTER 2013

Keep Your Body, Mind & Spirit Up & Moving in the New Year!

A newsletter devoted to the most current medical, social and psychological aspects of Parkinson’s Disease

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UPDATE

Parkinson’s Disease

By Marilyn Tait Parkinson Educator, Motivator & Advocate Director, Parkinson Place, Sarasota, FL arkinson’s disease, for belief that “I have Parkinson’s, Parkinson’s does both patient and care not have me” will give you the strength, courpartner, can create the age and confidence to face each day and live it challenge of a lifetime af- to the fullest. You can only think one thought fecting the physical, men- at a time and you can choose the thought! tal, emotional and social Think positive! aspects of life. Physical To be your best with Parkinson’s and avoid effects to include tremor, feeling out of control, take control of your life rigidity, slow movements and do everything possible for yourself. Eat and poor balance can right, get adequate rest, take your medications make the simplest task dif- on time, exercise daily, manage stress and most Marilyn Tait ficult requiring non-stop important of all, spend time with those you love energy, effort and motivation. Mental effects doing the things you love to do. such as memory loss and cognitive deficits impact behavior, communication and physical function making the ability to stay engaged in relationships and routine activities difficult and sometimes impossible. Parkinson’s has the ability to put patients and care partners on an emotional rollercoaster that can make for a rough ride. Feelings of frustration, anxiety, anger, apathy, fear, dependency, stress, depression, isolation and hopelessness are common in many effecting emotional wellness and quality of life for both patient and care partner. At Parkinson Place, a program of the ParAll of the above, far from pleasant, chal- kinson Research Foundation, in Sarasota, FL we lenges that for many Parkinson patients are part offer over 80 free programs each month that of everyday life, can negatively impact the hu- keep your body, mind and spirit up and movman spirit and one’s confidence and sense of ing focused on meeting the physical, mental, self making it easy to isolate at home avoiding emotional and social needs of Parkinson papublic exposure and the glances of others. Not tients and care partners. All of the programs feeling normal with the inability to function or are evidence based proven to improve funchide symptoms has the potential to rob one of tion, cognition and sociability. joy, happiness and enthusiasm for life. Please visit ParkinsonPlace.org to see, first The key to living well with Parkinson’s hand, what we do locally as well as our interis to keep your body, mind and spirit up and national outreach via the websites. Please also moving when the disease tries, in every way visit ParkinsonResearchFoundation.org to see possible, to slow you down. Start out each day what you can do to help us contribute to the on a positive note with the belief that you can quality of life for the 1.5 million people around control your thinking. The body will follow the the world wanting a better life today with Parmind! If you want to feel alive, stay out of the kinson’s disease. Your contributions to the Parrecliner! Get up, get dressed and get going if kinson Research Foundation make the world a only in your mind. A positive attitude and the better place.

In this issue Keep Your Body, Mind & Spirit Up & Moving in the New Year!. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Chairman’s Column “We Need Your Help to Give Hope to Others” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stem Cell Transplantation Shows Promise for Parkinson’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Effects of Exercise on Parkinson’s Disease . . . . . . . . . . . . . . . .

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WHO CARES! “Simple Solutions & Success Strategies for Parkinson Caregivers”. . . . . . . . . . . . . . . . . . . . . Parkinson’s Disease and Impaired Gastrointestinal Motility. . . . . Alpha-synuclein Under Your Skin?. . . . . . . . . . . . . . . . . . . . . . . Parkinson’s Disease and Depression. . . . . . . . . . . . . . . . . . . . . Where There’s a Will . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2014 Parkinson Educational Cruise to the Western Caribbean. . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Chairman’s Column

“ We Need Your Help to Give Hope to Others”

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he Parkinson Research Foundation (PRF) looks forward to moving ahead with gusto in the New Year, focused on our mission to fund research, publish scientific findings, promote Parkinson awareness, sponsor educational conferences and provide funding for Parkinson Place, an 8,500 square foot site in Sarasota, FL dedicated to the physical, mental, emotional and social needs of those living with Parkinson’s disease. With the reality that seniors are living longer and that the number of Parkinson patients continue to grow, we are dedicated to heightened education, awareness and services that support quality of life for patients, caregivers and families facing the overwhelming challenges of life with Parkinson’s. Our premier program is Parkinson Place offering over 80 free educational and participation programs that promote a better life today for those living with this devastating disease. PRF has committed to sophisticated websites (ParkinsonPlace. org and ParkinsonResearchFoundation.org) offering instant availability to the latest research and information available. Professional podcasts bring motivating educational programs and the opportunity to take part in group classes such as Yoga, Tai Chi, Dance, Voice and Exercise programs via videos in the comfort and convenience of homes around the world. This all takes money! The Parkinson Research Foundation’s mission is a great one! We will continue to forge forward. Please help us help others. Donate today! Kind Regards,

Lawrence Hoffheimer, Chairman

Stem Cell Transplantation Shows Promise for Parkinson’s Disease

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any studies going back many years have investigated the possibility of creating neural stem cells in the lab and transplanting them to regions of the brain damaged by Parkinson’s disease. Usually, these studies have been done using mouse models of PD and have involved heavy uses of immunosuppression. Some studies have used cells obtained from the transplanted mouse itself, but results have rarely shown any benefit and are very difficult to duplicate. Now, a researcher at Kyoto University’s Center for IPS Cell Research and Application in Japan has experimentally shown that cells derived from the subject’s own body produced almost no immune response when transplanted into the brains of monkeys and actually resulted in viable neural cells.  Doctors Jun Takahashi and Asuka Morizane are interested in promoting new neural pathways to restore dopaminergic cell function in the hope that this approach will help people with Parkinson’s disease. When cells are obtained from the subject’s own body, they are called autologus. Cells derived from other sources are

called allergenic and evoke a very strong rejection response from the subject that receives them. Autologus transplants are generally better tolerated especially in those with Parkinson’s disease. This study used cells derived from the blood of the donor/subject and grew them into induced pluripotent stem cells (iPSC), which were then differentiated into dopaminergic neural cells. These same cells were then transplanted back to the monkeys’ brain. The monkeys were observed for three months and not given any immunosuppressant drugs. No rejection response was seen and the cells became viable, functioning dopaminergic cells in their new location. This is a radical approach that shows promise, however much more research will be necessary before it can be translated to human applications. CREDITS:

“A direct Comparison of Autologus and Allergenic Transplantation of iPSCDerived Neural Cells in the Brain of a Nonhuman Primate” Stem Cell Reports, 2013. dx.doi.org/10.1016/j.stemcr.2013.08.007

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Effects of Exercise on Parkinson’s Disease

ith the baby-boomers slipping into the age range when the risk of Parkinson’s disease (PD) is high, there is increasing interest in the effects and benefits of exercise to help both motor and non-motor complications of PD. Perhaps this is because the “boomers” have always been interested in health and exercise. More likely it is because the published research on the overall benefits of exercise for general health and well-being Juan Sanchez-Ramos is abundant and convincing. A recent publication in Movement Disorders nicely summaries the scientific knowledge in this field. Here, Dr. Sanchez-Ramos has condensed the extensive review into a brief article.

modalities, whereas balance training improved Unified Parkinson’s Disease Rating Scale (UPDRS) Activities of Daily Living score and physical function. Another study compared 3 months of high-versus low-intensity treadmill training with stretching and resistance exercises and found similar effects on physical fitness with a dose-response relationship (peak VO2), whereas all intervention arms improved in gait speed (6-minute walk test). Significant changes in the UPDRS motor scales, balance (functional reach), non-motor symptoms, and quality of life were not observed in these studies. Balance Training: Poor balance is a common and devastating consequence of PD. Recently, several studies examining the effect of balance exercises in PD showed that balance exercises, either alone or in combination with other training modalities such as strength, joint mobility, or gait training, can reduce the number of falls and improve balance control, overall physical functioning, postural transfers, freezing of gait and functional reach. Previous reports suggested that the combination of resistance exercises and balance training in PD was more effective in improving balance and postural stability compared with balance training alone. Due to differences in balance exercises, combinations with other exercises, duration and intensity of the exercises, and outcome measures, it is difficult to determine superiority of any of the treatments or added value of different modalities. In addition, many balance scales used in trials may be insensitive to the unique deficits found in PD such as difficulty turning or difficulty with dual tasks and may be insensitive to mild balance deficits or mild improvements in balance after training.

Traditional exercise modalities, such as strength, flexibility, and aerobic or balance training has been reported by many independent investigations to improve some aspects of mobility, strength and flexibility. Compared with their healthy peers, PD patients have reduced muscle strength (i.e. force) and power (i.e. force × velocity), both of which have been associated with reduced walking speed, walking efficiency and postural instability, resulting in a higher risk for falls. Reduced muscle strength and power could be the result of muscle disuse, as PD patients are known to be physically inactive.  However, decreased muscle strength is most likely a manifestation of a central nervous system deficit because muscle strength has been shown to improve with levodopa medication.  A recent review and a recently conducted 2-year randomized controlled trial on the effects of resistance training in PD concluded that resistance training increases muscle strength and endurance and is likely to result in improved gait parameters and functional improvements in mobility. Strength training is also endorsed by the evidence-based guidelines for physical therapy for PD. Furthermore, PD patients have an abnormally flexed posture with resulting shortened flexor muscles such as hip flexors, hamstrings, and pectoral muscles. Trunk and neck range of motion is often reduced, particularly axial extension and rotation. Decreased range of motion of the trunk, in particular, is related to function (i.e. functional reach and both functional reach and gait can be improved by improving available range of motion).

Complex Multifaceted Exercise: Given what we know about the complex nature of PD-specific deficits that contribute to poor balance and gait, it is unlikely that one exercise, for example, aerobic training by itself, will necessarily improve balance control adequately. With greater understanding of the complex nature of balance and gait deficits in PD, people have begun to investigate multifaceted exercise such as Tai Chi, dance, and agility training that may simultaneously target multiple aspects of disability. Tai Chi, known to improve balance in the elderly, has a strong emphasis on maintaining control of one’s center of mass. Tai chi has received attention in the PD community after several randomized clinical studies reported the beneficial effect of tai chi for people with PD on postural control compared with no intervention and compared with stretching or resistance exercise. Furthermore, in the latter study, the tai chi group performed better than the resistance training or stretching group in balance and gait measures, and both resistance exercises and tai chi led to a decrease in falls. Tai chi naturally combines slow control of movement, strength, multidirectional movement, and complex sequential action requiring cognitive attention.

Aerobic Training: A recent randomized clinical trial compared 16 months of balance training versus aerobic exercise (treadmill, stationary bicycle or elliptical trainer) with stretching (control) and found aerobic exercise to improve physical fitness (walking economy) compared with the other

Dance is also receiving much attention as an interesting exercise strategy for PD because it naturally combines cueing, 3

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Effects of Exercise on Parkinson’s Disease (continued from page 3) spatial awareness, balance, strength and flexibility, and physical activity (or even aerobic exercise if the intensity is sufficient). Moreover, it is enjoyable and stimulates social engagement and peer support. Clinically significant improvements were found in balance, gait, and endurance when comparing the tango, waltz, and fox-trot with traditional exercise interventions. A clinical study with a 12-month community-based tango program resulted in significant and clinically important reductions in disease severity (UPDRS), balance impairment, and dual-task walking compared with controls. In addition, freezing of gait occurred more in the control group at follow-up, and the 6-minute walk test deteriorated in the control group at follow-up, whereas the dance group remained stable. Interestingly, upper extremity function in the nine-hole pegboard test also significantly improved in the dance group. Together with the improvement in UPDRS motor score, this implies that the effects are transferred to nonrelated tasks and may suggest a disease-modifying effect. Moreover, it shows that long-term exercise treatment is feasible and that it results in an increase in participation in physical and social activities.

proved. Moreover, functional MRI performed after a single bout of forced exercise revealed the same change in network activation pattern as that seen between medication states. Summary: There is a growing body of empirical evidence documenting the beneficial effects of exercise on gait and balance control in PD. There is also exciting research that demonstrates exercise-induced changes to the brain. There is a need, however, of specific recommendations regarding the frequency, intensity, and type of exercise for people with PD. The experts in this area of exercise research strongly suggest an increased role for exercise and rehabilitation at all stages of the disease and believe that exercise should use a wide variety of movements and address many different constraints on mobility. When designing an exercise program for a PD patient, the following items should be considered: 1. The exercise should be targeted to address patient-specific problems or disabilities. 2. The exercise should be feasible. Unrealistic time-consuming regimens will decrease patient compliance; however, exercise strategies that cover several areas of physiological restrictions simultaneously or combine several exercises into one training session of approximately 1 hour seem feasible time consumption. 3. Exercise-related risks should be assessed. 4. Barriers to exercise should be decreased by, for instance, group classes, home exercise, monitoring and treatment of non-motor symptoms and comorbidities, personal goal setting, and seeking alternative ways to improve exercise participation on a permanent basis.

Exercise-Induced Changes to the Brain: There is strong evidence from the animal literature that aerobic training not only improves functional performance but also creates changes at the level of the brain itself. Experimental rodent models of PD showed that high-intensity aerobic training produces many changes in dopamine receptors and transporters and reduces glutamate neurotransmission (a beneficial effect). Along with these brain changes, high-intensity treadmill running was shown to improve motor symptoms in rodent models of PD.  Neurochemical and neuroplastic changes are less straightforward when studying exercise intervention for humans. Recently, a pilot study reported that intensive aerobic exercise in early PD patients resulted in better postural control and increased postsynaptic D2 receptor binding potential on PET imaging with radio-labeled fallypride, an indicator that dopamine neurotransmission was im-

*This article was selectively condensed for readers of Parkinson Update from an extensive review published by N. van der Kolk and L. King in Movement Disorders Vol .28: pages 1587-1596, 2013. Readers who want more details and references can request a copy of the original article by contacting Laurie King, PhD, PT at Kingla@ohsu.edu.

WHO CARES!

“Simple Solutions & Success Strategies for Parkinson Caregivers” By Marilyn Tait, Parkinson Educator, Motivator & Advocate

AVOID CLUTTER – Take time to go through your home

Life for a caregiver is crazy enough. Organization is the key! To do it all and do it well, try these easy and effective ways to make life easier.

and tidy up the rooms you use the most, kitchen, bath and bedroom for sure. No need to ditch and pitch just put away items collecting dust. Keep handy only what you need. If the bathroom shelf is lined with non-essentials, remove and replace with toiletries you use every day. If the bedside table is home for a potted plant remove to make room for necessities. Focus your home set-up on simplicity, convenience and need. If the space around you is tidy, so is your mind!

RELY ON ROUTINE – Routine can be

boring and monotonous but necessary to save time and stay on track. A daily ritual guides you through the day and announces what’s coming next. Create a timeline for the activities of daily living that works for you. Set a time to wake, Marilyn Tait eat, sleep, bathe, dress, nap and take medications. Replay it every day. When you wake each morning assume your routine and anticipate your day but always be ready for change. Life happens!

SET UP – To avoid running back and forth, keep the things you use routinely at arm’s length. Leave a pile of clean towels in the bathroom and reusable clothing folded neatly on the dresser top. Keep medications and supplies close at hand. Set a table next to your loved one’s bed and favorite chair stocked with essentials like beverages, snacks, phone, favorite book, news4

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Simple Solutions & Success Strategies for Parkinson Caregivers (continued from page 4) MAKE A LIST – Keep it accurate and up to date.

paper, magazines, tissues, medications and remote control. This will save time and energy and help you feel less like wait staff.

•E  mergency Contacts to include name, relationship, address and phone number •D  aily Contacts to include Pharmacy, Medical Supply Company, Home Healthcare Agency, Transport Service, Therapists, Counselors, Clergy and providers you routinely call •P  hysicians to include name, specialty, address, phone, nurse and key staff members •C  urrent Medications to include name of drug (brand & generic) and daily dosage •K  nown Allergies to include medications, foods and other adverse reactions •M  edical Problems to include diagnosis, hospitalizations, diagnostic tests, surgeries, special procedures and current treatments; include dates and locations if possible

MEDICATIONS MADE EASY – Organize medications

in a daily/weekly medicine box http://www.ariannabelle.com/blog/category/ that eliminates dosing mistakes organize/bathroom-organization and the need to remember. posted in bathroom organization, Look into those with timers if linen closet organization need be. Restock weekly with or without your loved one. This makes it easy for those medicating throughout the day and gives forewarning when time to renew prescriptions. Why run to the pharmacy in the rain?

MONTH-AT-A-GLANCE – Keep a large block “Month-At-A-

TAKE NOTES – Keep up front for easy access

Glance” calendar by the phone or on your desk. Guard it with your life! Write down every appointment to include name and contact number. This offers an accurate overview and forecast for today and the weeks to come. Your customized calendar will reduce the risk of missed appointments and over-booking. Why remember when you can write it down?

•N  on-Emergency Medical Issues: Make note of subtle changes that need to be reported at your next doctor’s appointment. Include date and description, e.g. Poor Appetite; Problems Sleeping; Loss of Interest; Mild Memory Loss; Occasional Confusion; Periods of Incontinence; Skin Issues; Poor Balance or anything else that appears different. •P  ertinent Questions: Keep a list of questions that you want to ask the doctor at next visit. It’s easy to forget when face-to-face or feeling rushed. •F  uture Medical Appointments: Write down newly scheduled and upcoming appointments with name, address, phone number and reason

DAILY AGENDA – Utilize a daily planner or e-calendar to or-

ganize your day and prevent over scheduling. Use a pencil that you can erase. Schedule sensibly to avoid running like a chicken. Prioritize appointments and decline what merely wastes your time. Mark Special Events, Birthdays and “My Time” in ink. Do not try to pack 36 hours into a 24-hour day!

EASY ERRANDS – Keep a list of the things you need and

where to go to get them. Bank, post office, grocery, pharmacy, convenience store, dry cleaner, bakery, hardware store, gas station, etc. To avoid bouncing back and forth all over town, put your errands in order then work your way to and from home stopping as you go. Ask a willing family member or friend to pick up what’s too far out of your way.

KEEP RECORDS – Make copies of legal documents; Keep

MINUTE MEALS – Try to make meal planning simple and

IN ADDITION – Don’t forget!

NO LAST MINUTE – Make plans early to avoid last minute

Message from Marilyn …

originals in a secure safe spot • Save all medical reports and correspondence • Keep a copy of Living Will, Healthcare Surrogacy, Power of Attorney, DNR status and other legal paperwork

• Pick up or ask for a business card at every new appointment • Take your notebook to every appointment for reference and additional notes • Keep handy in a convenient spot in your home • Maintain your notebook so its organized, accurate and up to date • Realize your notebook could save your loved one’s life if home alone, facing an emergency situation and unable to respond. The rescue squad can gain instant information if you’re not there, so keep your notebook in an obvious spot where others can find it.

preparation easy. When you wait on someone all day, do you want to stand and prepare a turkey feast for dinner? • Rely on quick fix meals & casseroles that you can make in advance & heat in a hurry •M  ake double amount of one-pot meals, soups and stews •K  eep tossed green and pasta salads up front and center •P  urchase fruits and veggies already cut and cleaned •H  it the deli hot section and the cold salad bar •A  ccept all meals handed to you and never say no to take out or reservations • S hould you have a sudden urge to cook a six-course meal, tune in to the food network and get over it! confusion. If you need someone to stay with your loved one next week, secure a sitter today. If you need transportation next month, set it up now. Stay focused on your Month-At-A-Glance calendar and stay way ahead of the game. Take control over last minute frenzy by securing coverage and making necessary arrangements well in advance. Be organized for once!

If you have never before made an effort to be organized, this might be a good time to start. Organization saves time and energy and offers a sense of control. The need to merge your life with your loved one’s doubles your day in every way. The key is to cut your time in half so you have time to do everything twice! Short cuts and simplicity are the solution. To handle everything you must stay focused and sure-footed. It’s not enough to keep all the balls in the air. You must do it with style and grace!

INFO FOLDER – To avoid the stress of searching for what

you need and not finding it, organize a heavy-duty folder or notebook to keep medical information filed at your fingertips. 5


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Parkinson’s Disease and Impaired Gastrointestinal Motility

he affliction of Parkinson’s disease slows the muscle function of all bodily systems, including the smooth muscles of the bowel. Impaired gastrointestinal motility means ingested food remains in the body longer than normal, providing a luxuriant environment for bacteria to thrive. An investigative group of eighteen Italian researchers undertook a study to clarify the role of infectious proliferation in people suffering from Parkinson’s disease, their aim to probe whether small intestinal bacteria overgrowth (SIBO) contributes to motor complications. Under normal physical conditions, the body prevents SIBO by a combination of actions: gastric acid, pancreatic enzymes, the physical barrier of the ileocecal valve and the continual movement of foodstuffs through the intestine, all preventing attachment and proliferation of microorganisms. In people with PD, impairment of smooth muscle function in the gastrointestinal tract is evident in delayed gastric emptying — a disorder that slows or stops the movement of food from the stomach to the small intestine — and constipation. Patients and controls underwent glucose, lactulose and urea breath tests to detect small intestinal bacterial overgrowth (SIBO) and infection with Helicobacter pylori infection. Those with PD also had ultrasounds to evaluate their gastric emptying. Researchers assessed patient’s clinical status and plasma concentrations of levodopa after they were given a standard dose of levodopa. Investigators gauged motor complications using section IV of the Unified Parkinson Disease Rating Scale, and patient 1-week diaries detailing their motor condition in the week prior to each visit. They considered total off-time duration in hours/day, daily episodes of wearing off, delayedon and episodes of no-on time. Examiners treated patients who harbored bacterial overgrowth with rifaximin and re-examined the patients 1 and 6

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months later. The team of investigators found the prevalence of SIBO was significantly higher among PD patients than controls, 54.5% versus 20.0%, though the prevalence of infection with Helicobacter pylori was not significantly greater (patients 33.3% vs. controls 26.7%). When comparing PD patients without SIBO to those infected with overgrowth and Helicobacter pylori, those with both infections had significantly higher prevalence of unpredictable motor fluctuations (8.3% PD patients without SIBO vs. 87.5% PD patients with SIBO and Helicobacter pylori). Comparing patients without SIBO to those who harbored SIBO — those with SIBO had longer daily offtimes and more episodes of delayed-on times and no-on times. With the elimination of intestinal overgrowth by treatment with the antibiotic rifaximin, researchers saw improvement in motor fluctuations. Patients receiving the drug reported no side effects related to antibiotic therapy and 14 of the 18 SIBO+ patients were free of SIBO one month after antibiotic treatment. The relapse rate of infestation of bacteria at 6 months was 43% in PD patients and 27.5% in controls. To examine the effect of SIBO eradication independently, investigators postponed the possible extinction of Helicobacter pylori until the end of the study. When performed, researchers used three types of antibiotics — amoxicillin, clarithromycin and lansoprazole as recommended by the Maastricht Consensus Conference 2000. The authors confirmed an increased prevalence of SIBO in people with PD, establishing an association between SIBO and motor fluctuations, and showing with SIBO elimination, patients experienced clinical improvement. CREDITS:

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/ Fasano A. et al. The Role of Small Intestinal Bacteria Overgrowth in Parkinson’s Disease. Mov Disord. 2013; 28: 1241-1249.

Alpha-synuclein Under Your Skin?

lpha-synuclein has been the subject of so many articles, it does seem to get “under your skin”, so to speak!  Now a research team from Beth Israel Deaconess Medical Center in Boston has found that the alpha-synuclein found just under the skin may be a potent biomarker for Parkinson’s disease.  Non-motor symptoms such as changes in body temperature, bowel habits, and skin coloration often occur long before other symptoms that lead to the diagnosis of Parkinson’s disease.  Finding a way to know who is at risk to develop Parkinson’s disease early in the process could enable earlier treatment and delay onset of the disease, or possibly lead to finding a cure.  This is the search for a biomarker,

and it is the basis of many current studies. Dr. Roy Freeman and his team are one group involved in this search.  Their research has focused on autonomic and peripheral nervous functions in Parkinson’s disease, so they naturally looked at autonomic skin functions and reactions in this disease.  They surmised that a skin biopsy might provide information that could identify a biomarker for Parkinson’s disease.  In a small study funded by a grant from the National Institutes of Health (NIH) they examined 20 people with a diagnosis of Parkinson’s disease and 14 non-Parkinsonian controls.  They took skin biopsies from three different locations on their legs and found … alpha-synuclein.  Even higher levels of alpha-

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synuclein were found in the skin biopsies of people in more advanced stages of Parkinson’s disease. The next steps in this study will be to measure alpha-synuclein in skin of people known to be at risk for Parkinson’s disease, and to see if depositions of alpha-synuclein in the skin can differentiate Parkinson’s disease from other neurodegenerative diseases.  A small skin biopsy is a safe and simple procedure that could be a big breakthrough as a biomarker to predict Parkinson’s disease. Article by Marcia McCall N. Wang, C. H. Gibbons, J. Lafo, R. Freeman. Synuclein in cutaneous autonomic nerves. Neurology, 2013; DOI 10.1212/ WNL.0b013e3182a9f449 


PARKINSON’S DISEASE AND DEPRESSION

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wo new research studies focused on Parkinson’s disease and depression were published recently. One studies the increased risk of developing Parkinson’s disease after bouts of treatment resistant depression. The second study was an analysis of several studies of antidepressant medications used in Parkinson’s disease. Depression is a serious risk in people with Parkinson’s disease; some studies have shown that as many as 60% of people with PD are depressed. The first study looked at 10 years of records and found correlations between age of onset of depression and development of PD. In younger patients, depression did not always lead to Parkinson’s disease, however more senior patients were twice as likely to be diagnosed and seniors whose depression did not respond to treatment were found to be three times more likely to develop PD. While this study is not proof-positive that depression necessarily leads to Parkinson’s disease the correlation does bear serious weight for future research.  It may be that depression could be an early symptom or biomarker, like loss of the sense of smell; but since 60% of people with Parkinson’s report feeling depressed, it may simply be a symptom.  One limitation of this study was that the population studied did not provide any information about family history or other environmental factors.  These factors will need careful evaluation in future studies. The second study examined the effects of common antidepressant treatment in Parkinson’s disease. They based their study on 11 clinical trials of treatment for depression in Parkinson’s disease held between 1986 and 2013. These trials used medications that are standard treatment for depression in PD as well as standard treatments for PD that have shown efficacy for treating depression. These medications included

Tricyclic Antidepressants (TCAs), Selective Serotonin Reuptake Inhibitors (SSRIs), Serotonin and Norepinephrine Reuptake Inhibitore (SNRIs) and Dopamine agonists, which have also been promoted as relieving depression in PD. The research was very thorough, examining not only the effect on depression, but also on troublesome side effects, such as nausea, dry mouth, headache, dizziness, hallucinations, somnolence and excessive dyskinesia. They also compared the rating scales used to evaluate depression. Their basic findings were that dopamine agonists were no more effective than placebo in relieving depression, and sometimes had more serious side effects. SSRIs and SNRIs were used as a first choice to avoid the side effects of tricyclic antidepressants, such as dry mouth, dry eyes and constipation. Ultimately, it was found that tricyclic antidepressants were more effective than SSRis or SNRIs, and were often very well tolerated, suggesting that tricyclic antidepressants might well be a better first choice for depression in PD. The authors caution that this study has several serious limitations, such as the age of the participants and the stage of the disease.  Motor fluctuations and other co-morbidities and medications also need to be accounted for.  Larger studies are needed to clarify and confirm the data that this early study has begun.   C.-C. Shen, S.-J. Tsai, C.-L. Perng, B. I.-T. Kuo, A. C. Yang. Risk of Parkinson disease after depression: A nationwide population-based study. Neurology, 2013; DOI:10.1212/WNL.0b013e3182a956ad    Liu J, Dong J, Wang L, Su Y, Yan P, et al. (2013) Comparative Efficacy and Acceptability of Antidepressants in Parkinson’s Disease: A Network Meta-Analysis. PLoS ONE 8(10): e76651. doi:10.1371/journal. pone.0076651

Where There’s a Will … Our Federal ID number is 20-0205035.

… there is increased hope for victory over Parkinson’s disease! Many individuals have asked the Parkinson Research Foundation for advice on ways to include the Foundation as a beneficiary in their wills. It goes without saying that such bequests are of great value to the Foundation and play a key role in its ongoing efforts to improve the quality of life for those affected by Parkinson’s and their families.

Some additional bequest options would include the bequest of a specific object of value or of the remainder of an estate after provisions for debts, general and specific bequests, and administrative expenses, including taxes. Also, there are Charitable Remainder Trusts, which make annual payments to a beneficiary for a specific period of time (including a lifetime), after which the trust remainder is transferred to another designated organization, and Charitable Lead Trusts, which work in the exact reverse order.

The following language has been reviewed and is deemed a legally acceptable form for including such a bequest in a will: “I give and bequeath to the Parkinson Research Foundation, 5969 Cattleridge Blvd., Ste. 100, Sarasota, FL 34232 for discretionary use in carrying out its aims and purposes, (the sum of $____) OR (a sum equal to ____% of the value of my gross estate at the time of my death under this will or any codicil hereto).”

The most important aspect considering or making any changes to a will is that the well-being of your own family occupies the top most position in your planning. And, for their and your protection, you should always consult an attorney about any changes you plan to make to your will. 7


2014 PARKINSON EDUCATIONAL CRUISE TO THE WESTERN CARIBBEAN MARCH 9-15, 2014 DISTINGUISHED SPEAKERS & TALK TITLES

Royal Caribbean Luxury Cruise Line’s “Independence of the Seas” sails Sunday, March 9, 2014 from Ft. Lauderdale (Port Everglades) on a grand tour of the Western Caribbean with stops at Grand Cayman, Jamaica and the beautiful private island of Labadee. Please join us for the perfect opportunity to get away and enjoy the luxury of fun, relaxation, sociability, fine food, island shopping, tropical drinks, the finest entertainment and breathtaking sunsets While at sea benefit from Physician Lectures, “Ask-TheDoctors” Interactive Q&A Panel Discussions, Engaging & Empowering Motivational Talks, Fun Fitness Interactive Group Exercise, Sit or Stand Tai Chi and Sensational Parties and Social Events! Special Guests for the entire cruise include our distinguished faculty Juan Sanchez-Ramos, MD, PhD, Thomas N. Chase, SB, MD and Kathleen Clarence-Smith, MD, PhD, all renowned experts in their field. Don’t miss the opportunity to hear them speak as well as 1-1 time during dining & social time.

“Parkinson’s Disease What, Where & How?” Juan Sanchez-Ramos, MD, PhD – Dr. Sanchez-Ramos is a Professor of Neurology at University of South Florida where he holds the Helen Ellis Endowed Chair for Parkinson’s disease research. He directs the USF Parkinson Clinic at Parkinson Place in Sarasota, FL and serves as Medical Director for the Parkinson Research Foundation. “The Untold Story of PD – What Researchers Know but Haven’t Told Their Patients” Thomas N. Chase, SB, MD – Dr. Chase has 40 years of experience in the discovery & development of new drugs for Central Nervous System disease, first at the National Institute of Health (NIH) and then as founding CEO of Hamilton Pharmaceuticals. “Moving Better Medications from Bench to Market – Why Does It Take Too Long & Cost So Much” Kathleen Clarence-Smith, MD, PhD – Dr. Clarence-Smith is an internationally recognized neurologist whose career has been dedicated to developing new pharmaceuticals and moving them forward from early stages onto the market.

For your fun & entertainment, the theme for the social side of the cruise is THE ROARING 20’S showcasing the Charleston and fashions and music of the era plus a “Speak Easy” Dance Party just for you. Get out your flapper dress and spats for a once in a lifetime fun opportunity!

Call TERI today to book your cruise. We would love to have you join us!

(888) 462-1434 or (941) 627-8795 castawaycruises@earthlink.net APPROXIMATE CABIN RATES PER PERSON BASED ON DOUBLE OCCUPANCY

PRF EDUCATIONAL CRUISE 2014 SAILING MARCH 9, 2014 Sunday, 3/9 Monday, 3/10 Tuesday, 3/11 Wednesday, 3/12 Thursday, 3/13 Friday, 3/14 Saturday, 3/15

FT. LAUDERDALE (Port Everglades) FL AT SEA GEORGETOWN, GRAND CAYMAN FALMOUTH, JAMAICA LABADEE (Cruise Line Private Island) AT SEA FT. LAUDERDALE (Port Everglades) FL

--- --- 8:00am 7:00am 10:00am --- 5:30am

5:30pm --5:00pm 4:00pm 6:00pm ---

INSIDE - $830.85 PROMENADE - $875.85 JUNIOR SUITE - $1525.85

OCEAN VIEW - $895.95 BALCONY - $1005.85 - $1050.85

Parkinson’s Disease Update is published quarterly by the Parkinson Research Foundation, a nonprofit organization located at 5969 Cattleridge Blvd., Ste. 100, Sarasota, FL 34232. The material in this newsletter may be reproduced, but credit must be given to the Parkinson Research Foundation. © Parkinson Research Foundation, 2013

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Parkinson Research Foundation PD Update