Parkinson Research Foundation Spring 2014 Newsletter

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In this issue SPRING 2014 Parkinson’s Disease UPDATE A newsletter devoted to the most current medical, social and psychological aspects of Parkinson’s Disease PARKINSON RESEARCH FOUNDATION 5969 Cattleridge Blvd., Ste. 100 Sarasota, FL 34232 941-870-4438 www.parkinsonresearchfoundation.org Destination Parkinson Place: A Better Life Today Page 1 Chairman’s Column Page 2 Anxiety, Diet and Parkinson’s Disease Page 3 WHO CARES! “Simple Solutions & Success Strategies for Parkinson Caregivers” Page 4 Is a Peck of Pickled Peppers Protective Against PD? Page 5 Non-Motor Symptoms Associated with Sleep Disorder in Parkinson’s disease Page 6 Safinamide Increases “On” Time Without Worsening Troublesome Dyskinesia Page 6 Your Donations, Help Us Help Others Page 8 Help Us Help Others Page 8 Where There’s a Will Page 8 DESTINATION PARKINSON PLACE: A BETTER LIFE TODAY By Marilyn Tait* I f you or someone you love is living with Par- kinson’s disease, Par- kinson Place in Sarasota, FL is the #1 place to be. Since opening in the fall of 2012, with a limited 7,500 square feet of space and an offering of only 10 pro- grams a month, Parkinson Place has grown to encom- pass 11,000 square feet of integrated healing space to include medical, psychology and speech clinics, a physical ther- apy department and over 80 research based participation programs with clinical data prov- en to improve function and cognition for pa- tients in all stages. Membership remains free for Parkinson’s pa- tients and caregivers able to visit and participate in onsite pro- gramming. As Director of Parkinson Place, I acknowledge and ap- plaud the start-up commitment and continued vision of the Par- kinson Research Foundation, who through gen- erous donations from people like you, fund this extraordinary project that continues to grow into the future. Parkinson’s disease, a chronic, degenera- tive neurological disorder impacts every aspect of human life: physical, mental, emotional and social. The uncontrollable physical symp- toms of tremor, rigidity, slow movement and postural weakness added to an altered mental status with bouts of depression, dementia and impaired cognition make daily life an often unbearable challenge. The scope of emotions associated with Parkinson’s are far from positive. Frustration, depression, anger, fear, inadequacy, loss and loneliness are every day words. Sociability of- ten declines with added isolation due to limited function and mobility, exaggerated and of- ten unattractive physical symptoms, difficult speech, depression, apathy and low self-es- teem. What then is the answer for those questioning quality of life and hope for the future with Parkinson’s? The answer is simple and easily accessible at your finger- tips! Parkinson Place Multidis- ciplinary Care Center in Sara- sota, Florida has everything you need for a better life today with Parkinson’s disease. The USF Parkinson Clinic at Parkin- son Place directed by Juan Sanchez-Ramos, MD, PhD, noted Fellowship Trained Movement Disorders Specialist and the General Neurol- ogy Clinic, directed by Patrick J. Madden, MD, Board Certified Neurologist answers medical needs with scheduled appointments available daily. The Psychology Clinic, directed by An- gelo Domingo, Psy.D, Licensed Psychologist, offers treatment and answers for depression, dementia, cognitive changes and emotional concerns for patients, caregivers and families. Our onsite Speech and Swallowing Clinic, directed by Mary Spremulli, MA, CCC/SLP, of- fers a voice strengthening program for those with speech and swallowing problems that Marilyn Tait continued on page 2

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Newsletter for Parkinson's patients, caregivers, family, friends and supporters.

Transcript of Parkinson Research Foundation Spring 2014 Newsletter

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Destination Parkinson Place: A Better Life Today . . . . . Page 1

Chairman’s Column . . . . . . . . . . . . . . . . . . . . . . . . . . Page 2

Anxiety, Diet and Parkinson’s Disease . . . . . . . . . . . . . Page 3

WHO CARES! “Simple Solutions & Success Strategies

for Parkinson Caregivers” . . . . . . . . . . . . . . . . . . . . . . Page 4

Is a Peck of Pickled Peppers Protective Against PD? . . . Page 5

Non-Motor Symptoms Associated with Sleep Disorder in Parkinson’s disease . . . . . . . . . . . . . . . . . . Page 6

Safinamide Increases “On” Time Without Worsening Troublesome Dyskinesia . . . . . . . . . . . . . . . Page 6

Your Donations, Help Us Help Others . . . . . . . . . . . . . . Page 8

Help Us Help Others . . . . . . . . . . . . . . . . . . . . . . . . . . Page 8

Where There’s a Will . . . . . . . . . . . . . . . . . . . . . . . . . Page 8

DESTINATION PARKINSON PLACE: A BETTER LIFE TODAY

By Marilyn Tait*

I f you or someone you love is living with Par-kinson’s disease, Par-

kinson Place in Sarasota, FL is the #1 place to be. Since opening in the fall of 2012, with a limited 7,500 square feet of space and an offering of only 10 pro-grams a month, Parkinson Place has grown to encom-pass 11,000 square feet of

integrated healing space to include medical, psychology and speech clinics, a physical ther-apy department and over 80 research based participation programs with clinical data prov-en to improve function and cognition for pa-tients in all stages. Membership remains free for Parkinson’s pa-tients and caregivers able to visit and participate in onsite pro-gramming.

As Director of Parkinson Place, I acknowledge and ap-plaud the start-up commitment and continued vision of the Par-kinson Research Foundation, who through gen-erous donations from people like you, fund this extraordinary project that continues to grow into the future.

Parkinson’s disease, a chronic, degenera-tive neurological disorder impacts every aspect of human life: physical, mental, emotional and social. The uncontrollable physical symp-toms of tremor, rigidity, slow movement and postural weakness added to an altered mental status with bouts of depression, dementia and impaired cognition make daily life an often unbearable challenge.

The scope of emotions associated with Parkinson’s are far from positive. Frustration, depression, anger, fear, inadequacy, loss and loneliness are every day words. Sociability of-ten declines with added isolation due to limited

function and mobility, exaggerated and of-ten unattractive physical symptoms, difficult speech, depression, apathy and low self-es-

teem. What then is the answer for those questioning quality of life and hope for the future with Parkinson’s?

The answer is simple and easily accessible at your finger-tips! Parkinson Place Multidis-ciplinary Care Center in Sara-sota, Florida has everything you

need for a better life today with Parkinson’s disease. The USF Parkinson Clinic at Parkin-son Place directed by Juan Sanchez-Ramos, MD, PhD, noted Fellowship Trained Movement Disorders Specialist and the General Neurol-ogy Clinic, directed by Patrick J. Madden, MD, Board Certified Neurologist answers medical needs with scheduled appointments available daily. The Psychology Clinic, directed by An-gelo Domingo, Psy.D, Licensed Psychologist, offers treatment and answers for depression, dementia, cognitive changes and emotional concerns for patients, caregivers and families.

Our onsite Speech and Swallowing Clinic, directed by Mary Spremulli, MA, CCC/SLP, of-fers a voice strengthening program for those with speech and swallowing problems that

Marilyn Tait

continued on page 2

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L ast year was a fantastic year for the Parkinson Research Foundation. The community accep-tance of Parkinson Place and the Parkinson Research Foundation exceeded all projections and expectations. Attendance at our classes and seminars produced overflow crowds and

the repeat utilization by nearly 1,000 patients and caregivers made it clear that Parkinson Place has become THE destination place for Florida’s West coast Parkinson community.

What this means is that we need to reach out to Parkinson communities across the nation. Our web sites, www.parkinsonplace.org and www.parkinsonhope.org are viewed by people around the country and the world. Both sites contain information on the latest developments in the treatment of Parkinson’s disease and related therapies. I urge you to visit the web sites today.

With our large reach through this newsletter, PD Update, and the web sites, we are embarking on a program to attract Parkinson patients and their caregivers to visit Parkinson Place and the wonderful city of Sarasota, Florida. During their stay at a hotel around the corner from Parkinson Place, we will arrange for visits to our most beautiful beaches and the unlimited tourist attractions of Sarasota.

Please call Parkinson Place at 941.893.4188 to learn more about this exciting first of its kind outreach program.

Chairman’s Column

supports improved communication by means of voice classes and in home exercises. Even the Morning Café has a benefi-cial purpose with its fun informal Bistro setting offering com-plimentary cake and coffee at 9:30 am allowing patients and caregivers to start the day off right socializing with others shar-ing their experience.

The Physical Therapy Department at Parkinson Place, directed by Toya Crutchfield, PT, provides full physical therapy services with the focus on LSVT BIG, a 16 session, Medicare approved evidence based program for faster walk-ing, bigger steps and improved balance guaranteed to help Parkinson’s patients stay happy and safe at home doing the things they love to do.

All these exclusive services are customized to meet the needs of Parkinson’s patients and their caregivers. They are all available under one roof, by simply picking up the phone and making an appointment.

Also at your fingertips, is our easy to navigate website ParkinsonPlace.org with detailed information about programs and services, Month-At-A-Glance calendars and top quality video podcasts of participation classes (Exercise, Dance, Yoga, Tai Chi, Humor Yoga, Giant Steps and Ageless Grace) as well as one-of-a-kind educational and empowerment programs to include Ask-The-Doctor and Parkinson Power “Lunch & Learns.” In addition, all educational conferences and special events are available online for viewing, at your convenience, in the privacy of your home.

The ParkinsonPlace.org website is Parkinson Research Foundation’s commitment to serve the homebound and those outside the travel radius of Sarasota, Florida. We are happy to share everything we have with Parkinson patients and families everywhere but feel we can do better.

Dedicated to offering the finest physical, mental, emo-tion and social care and support for Parkinson’s patients and caregivers around the world, PRF has included in the program development plans for 2014, DESTINATION PARKINSON PLACE, a planned trip to Sarasota, to benefit from the pro-grams and services offered at Parkinson Place as well as the beauty, culture, entertainment and leisure amenities that only Sarasota, Florida can offer. Individual packages, travel plans and introductions to Sarasota’s finest hotels, restaurants, the-aters, museums, beaches and fun spots will be available at your fingertips. The PRF team looks forward to helping you plan your once in a lifetime or once a year adventure to Par-kinson Place.

There will never be a better time to stand up for those living with Parkinson’s disease. At Parkinson Place, those who cannot speak, sing! Those who cannot walk, dance! And those who cannot smile, laugh! There is no place like it in the world. There is no place making a greater contribution to quality of life and hope for those living with Parkinson’s disease. Please help us. Donate today!

* Marilyn Tait, Parkinson Place Director, is a noted Parkinson educator, motivator and advocate with forty five years of experience in healthcare management and program development. For the past 18 years, she has dedicated a full time effort to identify and meet the physical, mental, emotional and social needs of Parkinson’s patients, caregivers and families. The Parkinson Research Foundation, under the direction of Larry Hoffheimer, Chairman and Marilyn Tait, Director, has designed and developed Parkinson Place with the intent of creating a paradigm for Parkinson care in the twenty first century.

Destination Parkinson Place: A Better Life Today (continued from page 1)

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ANXIETY, DIET AND PARKINSON’S DISEASE

A nxiety is a common complaint in Parkinson’s disease (PD). Sometimes it is even present several years before motor symptoms appear or a diagnosis of PD can be made. It

is also a common complaint of older people, and it has been sug-gested that anxiety may even be a risk factor for development of PD. Anxiety symptoms in people with PD tend to be more severe than in age matched people without PD. In comparing results of several studies, it appears that about half of the people with PD will have anxiety sufficiently troublesome to cause clinical concern.

In people with Parkinson’s disease, symptoms of anxiety may be difficult to discern from symptoms of PD. Sleep distur-bance, restlessness, increased tremor and motor prob-lems may be part of Parkinson’s disease, but with anxiety, they are considerably worsened. Anxiety in Parkinson’s disease can lead to social phobia, obsessive-compulsive disorders or even panic disorders. Anxiety affects the quality of life of people with PD. It affects their relation-ships with other people, their overall sense of well-being and lowers substantially their emotional sense of well-being. This, in turn, can affect their activities of daily living; their interac-tions with loved ones and lead to feelings of isolation and depres-sion. Cognitive function is also affected by excessive worry, and anxiety is often a predictor of future cognitive decline. Depression is another factor that is common between older people and people with PD. In people with PD, there is a much stronger correlation between depression and anxiety and this can make treating the mo-tor symptoms more difficult. People with Parkinson’s disease may be reluctant to discuss these symptoms with their physicians, not wishing to discuss their worries and if they do, hurried physicians may see them as minor problems in their overall treatment.

Given the dopaminergic changes in the brain, the responses of serotonin and norepinephrine to those changes may drive the effects of anxiety and depression in people with Parkinson’s disease. There may even be a genetic predisposition. Some of the characteristics of anxiety may cause cognitive impairment which may in turn cause more anxiety as tasks such as problem solving in certain situations are anxiety producing in and of them self. Parkinson’s drugs have also been suggested as possible causes of anxiety as the relationship between dopamine and anxiety has not been fully investigated. The relationship of anxiety and PD is an important area needing more research. Because anxiety and motor symptoms are interconnected, that relationship will affect the outcome of treatment.

THE REALITY OF DIET AND PARKINSON’S DISEASERemember the diet affects anxiety as well. Many tend to ig-

nore the need for truly good nutrition. The chemistry of the body needs to be addressed as it is affected by the chemistry in our food. A lack of the essential vitamins and minerals in our diet can compli-cate anxiety issues.

WHAT FOODS HELP WITH ANXIETY?It is important that everyone get enough Magnesium in their

diet but especially those challenged with neurodegenerative issues. Magnesium relaxes muscles and nerves. Magnesium rich foods like: Raw Cocoa 50%, Pumpkin Seeds 47.7%, Spinach 39.1%, Swiss Chard 37.6%, Soybeans 36.9%, Sesame Seeds 31.5%, Halibut 30.3%, Black Beans 30.1%, Sunflower Seeds 28.4%, Cashews 25%, Almonds 24.6% can be added to the diet to help keep up magnesium levels to assist in minimizing anxiety.

SPECIAL NOTE ON RAW CACAO AND PARKINSON’SWhat is Cacao? Cacao is the seed of a fruit of an Amazonian

tree that was brought to Central America during or before the time of the Olmecs. Cacao beans were so revered by the Mayans and Aztecs that they used them as money! Cacao beans contain no sugar and between 12% and 50% fat depending on variety and growth conditions. Nature’s First Law cacao beans are around 40% fat con-tent (low compared to other nuts). There is no evidence to implicate

cacao bean consumption with obesity. The raw cacao bean is one of nature’s most fantastic super foods due to its wide array of unique properties, many of which are destroyed or corrupted by cooking.

FIVE REASONS FOR EATING RAW CACAO

1) CONTAINS NEARLY HALF OF YOUR DAILY MAGNESIUM

Cacao is remarkably rich in magne-sium. Cacao seems to be the #1 source of magne-

sium of any food. This is likely the primary reason women crave chocolate during the menstrual period. Magnesium balances brain chemistry, builds strong bones and is associated with more happiness. Magnesium is the most deficient major mineral on the Standard American Diet (SAD); over 80% of Americans are chroni-cally deficient in Magnesium! Raw chocolate has a good amount of magnesium, which has many benefits. You need a certain amount of magnesium every day to keep your body functioning properly. Raw chocolate can have anywhere from 100 to 170 milligrams of magnesium per 100 grams of raw chocolate. Men need around 400 milligrams per day, while women need a little over 300 milligrams. This makes it a good source for magnesium, and an easy way to consume the amount you need daily.

2) BRAIN CHEMISTRY AND RAW CACAOThere is a chemical in chocolate called tryptophan. This is an

essential amino acid that the body uses to help produce serotonin in the brain. Serotonin is important neurotransmitter in your brain that is involved in your behavior and moods. It is an important part of the functioning of your body, which is why you need a certain serotonin in your brain. Tryptophan can raise those levels, because it gives a small boost to serotonin production.

Phenylethylamine (PEA) is found in chocolate. PEA is an adrenal-related chemical that is also created within the brain and released when we are in love. This is one of the reasons why love and chocolate have a deep correlation. PEA also plays a role in in-creasing focus and alertness.

Anandamide (The Bliss Chemical) – A neurotransmitter called anandamide, has been isolated in cacao. Anandamide is also pro-duced naturally in the brain. Anandamide is known as “The Bliss Chemical” because it is released while we are feeling great. Ca-cao contains enzyme inhibitors that decrease our bodies’ ability to breakdown anandamide. This means that natural anandamide and/or cacao anandamide may stick around longer, making us feel good longer, when we eat cacao.

3) RICH IN HEART HEALTHY ANTIOXIDANTSThe flavonoids in cacao are what give it the antioxidant prop-

erties. Antioxidants help fight heart disease and can lower the risk of some types of cancer. They help protect your body’s cells against the threat of free radicals. Free radicals are harmful to your health

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WHO CARES!“Simple Solutions & Success Strategies for Parkinson Caregivers”By Marilyn Tait,Parkinson Educator, Motivator & AdvocateDirector, Parkinson Place Multidisciplinary Care Center, Sarasota, FL

ASK FOR HELP! Why do it alone? Try the following “Super Simple Success Strategies” to make life easier!

NEED TO ASK – Asking for help is a new feat for some. If you’ve never done it, because you’ve always been inde-pendent and able, you must start now. Trying to carry your caregiver’s load alone, down a long, rough road, is an exer-cise in futility. Accept it and start out right! Flank yourself from the “get go” with good caring people who are willing to step up and stick with you from beginning to end.

WHEN TO ASK – When you tell someone that you have a problem, what’s the auto-matic first response? Most often it’s “I’m so sorry. What can I do to help?” This might be lip service but at least it’s an offer. You will never have a better time to ask for help. Simply reply, “I don’t know today but may I call on you in the future if need be?” If the answer is yes, add their name and number to the “Super Star Support Team” list on the side of your refrigerator! HOW TO ASK – When it comes to giving a helping hand there’s no gift too small but realize that not everyone can do everything. A senior can sit and read to your loved one while the teenager next door can take out the trash. Des-ignate up front what your volunteer is willing and able to do. Make sensible requests accordingly. Determine time availability especially for those who work full time. To help yourself and make life easy, take all the help you can get. Ask for it in a gracious manner and express sincere appre-ciation with every word.

ASK OTHERS – Don’t do time consuming big jobs that can easily be accomplished by someone else. Your time is taken up caring for yourself and your loved one. Do you have extra time to clean the house, wash the windows, vacuum the pool, manicure the yard, detail the car and groom the dog? If possible, hire out these tasks for a tem-porary time or ask your “Super Star Support Team” to lend a hand. Those who love you will gladly help when given the chance.

BIG HELP – Long term care giving is exhausting especially when it requires hands on physical care.

Bathing, grooming, dressing, feeding, transferring and toileting take time and energy. If possible, rely on profes-sional help. Benefit from Home Health Care services if you qualify. Aids and other providers are available for private pay. If funding is not available, ask appropriate family mem-bers and friends to assist with physical tasks whenever pos-sible for the relief and support you need to stay standing.

LITTLE HELP – Small, yet necessary, tasks can fill your day. If others care enough to visit, they care enough to help. When someone asks “What can I do?” tell them! “Would you please fold the towels in the dryer and empty the dishwasher?” are sim-ple requests that can easily be performed in no time. Don’t ask drop by visitors to clean the bathroom if you want to see them again! If a friendly neighbor asks if

he/she could bring you something from the store simply reply, “I need milk and bread.” If you give up a few of your many duties, you’ll gain a lot more time for you!

GIVE & TAKE – Depending on physical and mental abil-ity, allow your loved one to do as much as possible to help you. If he/she can get up and go to the kitchen for a drink, ask for one too. If your loved one can set the table for two, that’s one less thing you need to do. Encourage independence because the more your loved one does the less demand on you. If your loved one is totally depen-dent, graciously accept that his/her days of helping you are over. Give yourself away in loving service and focus on a temporary time.

Message from Marilyn…Caregivers have a heart of gold and a mind full of good intentions but they sometimes lack common sense. Take good advice from a good friend and take all the help you can get. You, like others like you, will go until you drop. There’s no need. Allow caring family members and friends to come forward and carry you when need be. The only way you will do it all and do it well is with the love and support of others. Your burden will be twice as light if you give half of it away.

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Research on environmental factors that impact disease has long been and contin-

ues to be an important focus for many PD neuroscientists. Typically, researchers are looking for toxic substances or occupational hazards in the environment that increase the risk or even cause PD. One of the most important methods for uncovering risk factors is to con-duct epidemiological studies that examine patterns and frequency of disease in defined populations. These studies most commonly

identify factors that are deleterious to health, but occasionally neuroprotective substances are identified in the data. For ex-ample, many epidemiological studies have demonstrated that smokers of tobacco, and even those exposed to environmental “second-hand” tobacco smoke, have a lower risk of developing Parkinson’s disease (PD). Tobacco smoke contains thousands of chemicals but experimental studies in the lab have shown nicotine is, by itself, neuroprotective. Nicotine is also found in many plants besides tobacco, especially those of the Solana-ceae family, which includes peppers, tomatoes, potatoes and eggplants. All these plants contain nicotine but the amount ob-tained from these foods is negligible compared to the amount taken in from active smoking and likely lower than that from environmental tobacco, “second-hand” smoke. It is known that even nicotine blood levels obtained from second-hand smoke is sufficient to saturate a substantial portion of specific nicotine receptors found in the human brain. It is also known that stimulation of these nicotine receptors protects dopamine neurons in animal models of PD. With such a strong asso-ciation between environmental tobacco smoke and decreased chances of having PD, a group of investigators from the Pacific Northwest set out to study whether nicotine from the diet might also show an inverse relationship with PD.

The researchers used a case-control study population consisting of 490 cases of newly diagnosed with idiopathic PD. The control population consisted of 644 subjects en-rolled at Group Health Cooperative, a health maintenance or-ganization in the Puget Sound region. These control subjects did not have PD, were cognitively normal and did not suffer from other neurodegenerative disorders. The investigators as-certained dietary and tobacco use information with question-naires administered to each subject. The dietary history relied on a version of the Willet food frequency questionnaire to elicit information on typical frequency of consumption during adulthood of 71 foods and beverages covering all major food groups and sources of caffeine.

The principal finding was that the frequency of consump-tion of edible Solanaceae (peppers, tomatoes, tomato juice and potatoes combined) was inversely related to PD risk. Statistical analysis showed this lowered risk of PD in consumers of these

plants was only a “trend” and not of high statistical significance. However, this inverse relationship (i.e. more peppers, less PD) was strengthened by weighting for nicotine concentration of the specific plant. In this analysis, there was a strong inverse rela-tionship for peppers, but not for potatoes. Eating peppers 2 to 4 times or more per week was consistently associated with a greater than 30% reduction in risk of developing PD.

Several other epidemiologic studies have reported that a Mediterranean diet high in vegetables including tomatoes and peppers decreased the risk of PD. However, no other studies had focused on dietary nicotine or consumption of Solanacea, other than tobacco. There was some specificity of the inverse association between eating Solanacea plants and decreased risk of PD because it held up only for this family of vegetables and not all other non-Solanacea vegetables. In addition, the PD–Solanaceae association was largely confined to men and women who never used tobacco or only did so for a relatively short period.

The researchers were cautious with the implications of these results. 1) Compared to active tobacco use, diet is a very modest contributor to daily nicotine use. 2) The bio-logical effects on the human brain from dietary nicotine con-sumption are not yet established. 3) Tomatoes and potatoes are probably more important than peppers with regard to the absolute amount of nicotine ingested, yet the PD-Solanacea association was largely due to peppers. 4) Peppers contain many more constituents than nicotine that may be neuropro-tective. For example peppers contain anatabine, which has anti-inflammatory properties and capsinoids which may affect survival of midbrain dopamine neurons. It is unlikely that lycopene or vitamins A and C (all of which are found to be high in tomatoes) accounted for these findings because of the relatively weak association between ingestion of tomatoes and risk of PD.

The major limitation of this study, inherent to all ques-tionnaire-based research, is that diet data was obtained retro-spectively by self-report. In other words, subjects were asked to recall not only what he/she ate decades ago, but also the frequency of consuming specific foods and beverages. Another potential confounder may be that individuals with PD may be more likely to have heart-burn and thus limit their intake of peppers in particular. The authors conclude:

“It remains unknown whether nicotine reduces PD risk and whether nicotine agonists, including those in peppers, are neuroprotective or neurotoxic. Replication of our findings will be needed to strengthen causal inferences that might eventu-ally lead to dietary or pharmaceutical interventions designed to help prevent PD.”

Source: Nicotine from Edible Solanaceae and Risk of Parkinson Disease. Nielsen et al., ANN NEUROL 2013;74:472–477

Juan Sanchez-Ramos

Is a Peck of Pickled Peppers Protective Against PD?By Juan Sanchez-Ramos, PhD, MD

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A study done in Great Britain found that patients who re-ported more severe non-motor symptoms such as de-pression, constipation, or hallucinations also reported

having serious sleep behavior problems. While it is impossible to say that the sleep disorder is causative of the other non-motor symptoms, it appears that there is some common underlying pa-thology shared between them.

Rapid Eye Movement Sleep Behavior Disorder (RBD) is usually experienced by men and often is present for many years before any other symptoms of Parkinson’s disease become ap-parent. They have frequent terrifying nightmares, such as being chased by wild animals or being pursued by armed thugs and they violently act out their defense, often hurting themselves in the process or actually injuring their bed partners. They may yell or scream, punch or kick and actually jump out of bed during the nightmare. What causes RBD is not really well understood, but it often foreshadows the development of neurodegenerative diseases such as Lewy body dementia or Parkinson’s disease.

The study done at the Oxford Parkinson’s Disease Center by researcher Michele Hu, M.D., Ph.D., looked at 475 patients who had been diagnosed with Parkinson’s disease in the last 3 and a half years, they found that almost half of them had prob-able RBD based on responses to questionnaires. These same patients also reported more problems with non-motor symp-toms and had more orthostatic hypotension (low blood pressure on rising from a sitting or lying position) as well as more de-pression. They scored lower on Mini-Mental State Examination

and while there was no significant dif-ference in cognitive testing scores in the early stages, patients with RBD did show earlier cognitive de-cline as the disease progressed than non RBD patients. They also reported more problems with swallow-ing, chewing, turning in bed and walking and balance earlier than patients without RBD.

Patients with RBD saw themselves as having more difficul-ties with their motor functions and also as having a poorer quality of life. Fortunately, there is a medication that helps at least 90% of the patients affected by RBD. Clonazepam is the drug that has shown effectiveness within less than a week of beginning the medication. It needs to be taken continuously. The advice of a skilled movement disorder specialist needs to determine which medication is appropriate, as some medications can actually cause the condition to develop or worsen over time.

REM Sleep behavior disorder is associated with poor quality of life and other non-motor features in early Parkinson’s disease; Michele Hu et al; J Neurol Neurosurg Psychiatry doi:10.1136/jnnp-2013-306104

Review by Marcia McCall

Non-Motor Symptoms Associated with Sleep Disorder in Parkinson’s disease

Finally, there is a new medication for Parkinson’s disease (PD). Safinamide, known chemically as an alpha-aminoamide, has been under development for many years. It was conceived

as a medication to add onto a regimen of L-dopa (Sinemet) or do-pamine agonists (Requip, Mirapex) in patients with early or mid- to late-stage Parkinson’s disease (PD). It has been found to increase the benefits of L-dopa without worsening dyskinesias in animal models of PD and in some earlier Phase II clinical studies in patients. To clarify the language in this article, “on” time refers to the ability of patients with PD to perform motor activities without difficulty. “Off” time is typically noted when the effects of L-dopa have worn “off” and the patients have difficulty or inability to perform motor activi-ties. Dyskinesias are involuntary movements that develop in many patients after 3-5 years of L-dopa or dopamine agonist treatment. Dyskineisas are characterized by irregular involuntary dance-like (chorea) or twisting (dystonia) movements and posturing of a limb or multiple limbs. The dyskinesia can also affect face, mouth, jaw, head and trunk. Dyskinesias can be mild and non-troublesome but they can also be severe enough to interfere with motor function.

The results of a randomized trial of Safinamide (at 50 mg or 100 mg per day) were recently reported in the latest issue of Move-ment Disorders, a neuroscience journal dedicated to PD and other movement disorders. The primary objective of the study was to determine if adding Safinamide to L-dopa in the treatment of PD patients with motor fluctuations would improve on-time with no

or non-troublesome dyskinesia. Of course, the study evaluated potential adverse effects that might emerge from the experimental treatment.

This study design was a dou-ble-blind, placebo-controlled trial, considered by clinical scientists to be the gold-standard of clinical trials. Patients were randomly assigned to receive the active drug (either 50 mg per day or 100 mg day) or placebo (non-active look-alike pill). Neither patients nor investigators knew if the patient received the active drug or placebo until the end of the study when the “blind” was broken to analyze the data.

After 6 months of the study, the investigators analyzed the data and found significant increases in “on” time with no or non-troublesome dyskineas. Patients consider “on” time with no or non-troublesome dyskinesia as “good” on time and it corresponds to patients’ perceived duration of a good response throughout the day. Patients receiving Safinamide showed no increase in troublesome dyskinesia despite the significant increase in “on” time. Dyskinesia is the most disabling side effect of current PD medications and can have a significant impact on patients’ quality of life. This study also showed Safinamide treatment produced improvements in motor function and patients’ overall clinical status, activities of daily living,

continued on page 7

Safinamide Increases “On” Time without Worsening Troublesome Dyskinesia

By Juan Sanchez-Ramos, PhD, MD

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Safinamide Increases “On” Time without Worsening Troublesome Dyskinesia (continued from page 6)

and some aspects of quality of life. Patients who received 100 mg per day of Safinamide experienced more benefits, in general, than that group of PD patients who received the lower dose of 50 mg per day. Both high and low doses produced benefits that were significantly superior to placebo pills. The drug did not produce adverse effects beyond those observed in the placebo-treated group, hence it was considered to be safe. These findings are consistent with previous clinical data on the effects and tolerability of Safinamide when add-ed to L-dopa. Additional studies will address the efficacy of Safin-amide in early PD patients who are only taking dopamine agonists.

Additional information: The mechanism of action of this drug is very different from all other medications used in PD. In fact the drug has multiple mechanisms of action that combines those of an MAOB inhibitor (like rasagiline or Azilect), of a gluta-mate release inhibitor (like Riluzole and Lamotrigine, anti-epileptic drugs) and a dopaminergic drug (by extending the duration of dopamine at the synapse). The MAOB effect is similar to that of

rasagiline (Azilect), which has been reported to significantly im-prove “on” time without increasing troublesome dyskinesia. The antiparkinsonian effects at Safinamide 50 mg/day may be related to MAO-B inhibition, but the superiority of the effects at 100 mg/day cannot be ascribed to this mechanism as MAO-B because inhi-bition is virtually complete at a dose of 50 mg/day. This suggests that the enhanced benefit at this higher dose and its antidyskinetic effects may be mostly due to nondopaminergic mechanisms, per-haps the glutamate modulating effect.

Review written by Dr. Sanchez-RamosCitation: Borgohain et al., “Randomized Trial of Safinamide Add-On to Levodopa in Parkinson’s Disease with Motor Fluctuations” Movement Disorders Vol. 29: No.2, 2014

Anxiety, Diet and Parkinson’s Disease (continued from page 3)

and may play a role in long-term diseases such as cancer. If you have a high number of free radicals that are not being taken care of by your body, then they will accumulate and cause serious damage over a long period of time.

MAO Inhibitors: Cacao seems to diminish appetite, probably due to its monoamine oxidase enzyme inhibitors (MAO inhibitors) – these are different from digestive enzyme inhibitors found in most nuts and seeds. These rare MAO inhibitors actually produce favor-able results when consumed by allowing more serotonin and other neurotransmitters to circulate in the brain. According to Dr. Gabriel Cousens, MAO inhibitors facilitate youthening and rejuvenation.

4) CAN OPEN YOUR BLOOD VESSELSThe chemical compound Theobromine is an alkaloid, and it

has a few benefits. One is that it has the effect of a mild stimulant. It is used in medicine as a diuretic and a blood vessel opener. It is used to treat high blood pressure because of these characteristics. The diuretic component gives the chemical use as a cleansing aid, because it causes frequent urination. The levels of the chemical in chocolate will give you an extra boost by opening your blood ves-sels a little bit.

5) HAS MULTIPLE VITAMINSCacao is full of vitamins. These vitamins include A, B1, B2,

and B3 are only a few found in cacao. Vitamin A can strengthen im-munity and help with eyesight. Vitamin B1 can help brain function and cardiovascular health. Vitamin B2 protects against carcinogens and may help to prevent migraines. Vitamin B3 can help lower bad cholesterol and protect against heart disease. The combination of these vitamins in cacao can produce multiple helpful benefits for your long-term health.

These five health benefits from eating raw cacao are not to be overlooked. The amount of magnesium is another daily benefit that can help keep you healthy. If you want a reason to eat raw cacao every day, you don’t have to look very far because there are many.

FOOTNOTES AND CREDITSCacao contains subtle amounts of caffeine and theobromine.

However, experiments have shown that these stimulants are far dif-ferent when consumed raw than cooked.

Consider the following: Experimental proving of chocolate by homeopaths indicate its stimulating effect when cooked. One experi-ment conducted with a decoction of roasted ground cacao beans in boiling water produced an excitement of the nervous system similar to that caused by black coffee, an excited state of circulation, and an accelerated pulse. Interestingly, when the same decoction was made with raw, unroasted beans neither effect was noticeable, leading the provers to conclude that the physiological changes were caused by aromatic substances released during roasting.

EDITOR’S TIP:If you want to eat cacao for its benefits, the product should

be at least 70 percent cacao. But there are products that have a good amount of cacao that do not have as much of a benefit. This is be-cause the process they go through to be produced destroys some of the healthy flavonoids in the process, therefore the reasoning for RAW Cacao.

ALLERGIES?A recent study showed that only one out of 500 people who

thought they were allergic to chocolate actually tested positive. Al-lergies to chocolate are quite rare. It is typically the case that the person is in fact allergic to milk and dairy products.

Vegetarian Answers: Benefits of Raw CacaoRaw Super Foods: Benefits of Raw CacaoArticle by Marcia McCall

Vegetarian Answers: Benefits of Raw Cacao (http://vegetarian.answers.com/vegan/5-health-benefits-of-raw-cacao) Raw Super Foods: Benefits of Raw Cacao (http://www.rawsuperfoods.com/products/other/cacao.htm)

Chocolate and the brain: Neurobiological impact of cocoa flavanols on cognition and behavior

Alexander N. Sokolova, Corresponding author contact informa-tion, E-mail the corresponding author, Marina A. Pavlovab, Sibylle Klosterhalfena, Paul Encka

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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, 2014

… 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.

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).”

Our Federal ID number is 20-0205035.

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 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.

Where There’s a Will …

Your Donations, Help Us Help OthersBy Maureen DeMarks

Have you ever wondered if your dona-tions really make a difference? Everyone knows that research to find a cure for Parkinson’s dis-ease is a very costly venture therefore your do-nations are greatly appreciated by the Parkinson Research Foundation and the Parkinson com-munity. But are you aware of just how important your donations are to those living today with this most debilitating disease?

In September 2012, the Parkinson Re-search Foundation embarked on a life-altering program to assist those living with Parkinson’s disease. Parkinson Place, then a 7500 square foot destination site is now a 11,000 square foot Multidisciplinary Care Center offering over 80 free participation programs to keep those with Parkinson’s and their caregivers up and moving. Parkinson Place also offers on site Neurology, Psychology, Physical Therapy and Case Management clinics. The benefit to the Parkinson community from this pilot project has been overwhelming.

Parkinson Research Foundation recently took a survey of our members to hear first hand how Parkinson Place has benefited them. “Parkinson Place has saved our lives! We don’t know what we would have done without it.” “Parkinson Place has motivated me to keep learning and exercising. We drive here from Englewood. The trip of some 30 miles has always been worth the effort.”

Parkinson Place also sponsors several annual Educational Con-ferences. One attendee said, “This was one of the best seminars we have attended. We have been to numerous seminars in the past few years; Ft. Myers, Sarasota, Port Charlotte and lots of mini-sessions. This program and all speakers were great!” Another attendee stated, “I continue to be impressed at the talented speakers you recruit to speak at your seminars. Keep up the good work. Thank You!”

We invite you to visit Parkinson Place in person and online at www.ParkinsonPlace.org to see how your donations are helping others.

Assisting those with this overwhelmingly challenging disease is costly but the improved quality of life promoted at Parkinson Place at no cost to those facing the everyday challenges of Parkinson’s disease is incalculable. If you have anyone in your life with Parkinson’s you understand. Please help us help others by donating today. You will be glad you did!

Help Us Help OthersWAYS TO DONATE

The Parkinson Research Foundation relies on donations from our gener-ous donors to fund research and services available to the millions here in the US and abroad. We strive to make it convenient for you to donate.

Phone, Mail or OnlinePhone: To speak to our Donor Services Representative, simply call

941-870-4438.Mail: Send your check or money order payable to:

Parkinson Research Foundation, 5969 Cattleridge Blvd. Suite 100, Sarasota,FL 34232.

Online: www.parkinsonhope.org click on the donate link. Or you can navigate directly to our Network for Good page: https://donatenow.networkforgood.org/1416005.

Stocks, Securities, Mutual Funds and IRAsDonating stock and mutual fund shares are wonderful ways to help. Making a gift of securities is simple and offers a number of valuable financial benefits.

Stock Transfer Information:Investment brokerage: Fidelity Investments (Phone: 800-544-6666)DTC#: 0226Account Name: Parkinson Research Foundation, Inc.Account #: Z50054607

Wills, Bequests and Planned GiftsFor more details on Wills, Charitable Trusts, Life Insurance, Appreciated Securities, Real Estate and any other giving opportunities, please call Lynne Henry at the Parkinson Research Foundation 941-870-4438. She will be pleased to assist you.

Workplace Giving: Launch a Giving CampaignWant to get your employees fired up about donating to the Parkinson Research Foundation? Launch a workplace giving campaign!

Ask about Matching GiftsYour company might match your gift! Many employers double, even triple charitable donations. Some companies also match gifts made by retirees and/or spouses. Contact your employer for matching gift eligibility.