Parkinson Research Foundation PD Update

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In this issue WINTER 2013 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 Keep Your Body, Mind & Spirit Up & Moving in the New Year! Page 1 Chairman’s Column “We Need Your Help to Give Hope to Others” Page 2 Stem Cell Transplantation Shows Promise for Parkinson’s Disease Page 2 Effects of Exercise on Parkinson’s Disease Page 3 WHO CARES! “Simple Solutions & Success Strategies for Parkinson Caregivers” Page 4 Parkinson’s Disease and Impaired Gastrointestinal Motility Page 6 Alpha-synuclein Under Your Skin? Page 6 Parkinson’s Disease and Depression Page 7 Where There’s a Will Page 7 2014 Parkinson Educational Cruise to the Western Caribbean Page 8 Keep Your Body, Mind & Spirit Up & Moving in the New Year! By Marilyn Tait Parkinson Educator, Motivator & Advocate Director, Parkinson Place, Sarasota, FL P arkinson’s disease, for both patient and care partner, can create the challenge of a lifetime af- fecting the physical, men- tal, emotional and social aspects of life. Physical effects to include tremor, rigidity, slow movements and poor balance can make the simplest task dif- ficult requiring non-stop energy, effort and motivation. Mental effects such as memory loss and cognitive deficits im- pact 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 frus- tration, anxiety, anger, apathy, fear, dependen- cy, stress, depression, isolation and hopeless- ness are common in many effecting emotional wellness and quality of life for both patient and care partner. All of the above, far from pleasant, chal- lenges that for many Parkinson patients are part of everyday life, can negatively impact the hu- man spirit and one’s confidence and sense of self making it easy to isolate at home avoiding public exposure and the glances of others. Not feeling normal with the inability to function or hide symptoms has the potential to rob one of joy, happiness and enthusiasm for life. The key to living well with Parkinson’s is to keep your body, mind and spirit up and moving when the disease tries, in every way possible, to slow you down. Start out each day on a positive note with the belief that you can control your thinking. The body will follow the mind! If you want to feel alive, stay out of the recliner! Get up, get dressed and get going if only in your mind. A positive attitude and the belief that “I have Parkinson’s, Parkinson’s does not have me” will give you the strength, cour- age and confidence to face each day and live it to the fullest. You can only think one thought at a time and you can choose the thought! Think positive! To be your best with Parkinson’s and avoid feeling out of control, take control of your life and do everything possible for yourself. Eat right, get adequate rest, take your medications on time, exercise daily, manage stress and most important of all, spend time with those you love doing the things you love to do. At Parkinson Place, a program of the Par- kinson Research Foundation, in Sarasota, FL we offer over 80 free programs each month that keep your body, mind and spirit up and mov- ing focused on meeting the physical, mental, emotional and social needs of Parkinson pa- tients and care partners. All of the programs are evidence based proven to improve func- tion, cognition and sociability. Please visit ParkinsonPlace.org to see, first hand, what we do locally as well as our inter- national outreach via the websites. Please also visit ParkinsonResearchFoundation.org to see what you can do to help us contribute to the quality of life for the 1.5 million people around the world wanting a better life today with Par- kinson’s disease. Your contributions to the Par- kinson Research Foundation make the world a better place. Marilyn Tait

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News and helpful information regarding Parkinson's disease.

Transcript of Parkinson Research Foundation PD Update

Page 1: Parkinson Research Foundation PD Update

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Keep Your Body, Mind & Spirit Up & Moving in the New Year! . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 1Chairman’s Column “We Need Your Help to Give Hope to Others” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 2Stem Cell Transplantation Shows Promise for Parkinson’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 2Effects of Exercise on Parkinson’s Disease . . . . . . . . . . . . . . . Page 3

WHO CARES! “Simple Solutions & Success Strategies for Parkinson Caregivers” . . . . . . . . . . . . . . . . . . . . Page 4Parkinson’s Disease and Impaired Gastrointestinal Motility . . . . Page 6Alpha-synuclein Under Your Skin? . . . . . . . . . . . . . . . . . . . . . . Page 6Parkinson’s Disease and Depression . . . . . . . . . . . . . . . . . . . . Page 7Where There’s a Will . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 72014 Parkinson Educational Cruise to the Western Caribbean . . . . . . . . . . . . . . . . . . . . . . . . . . . . Page 8

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

By Marilyn Tait Parkinson Educator, Motivator & Advocate

Director, Parkinson Place, Sarasota, FL

Parkinson’s disease, for both patient and care partner, can create the

challenge of a lifetime af-fecting the physical, men-tal, emotional and social aspects of life. Physical effects to include tremor, rigidity, slow movements and poor balance can make the simplest task dif-ficult requiring non-stop

energy, effort and motivation. Mental effects such as memory loss and cognitive deficits im-pact 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 frus-tration, anxiety, anger, apathy, fear, dependen-cy, stress, depression, isolation and hopeless-ness are common in many effecting emotional wellness and quality of life for both patient and care partner.

All of the above, far from pleasant, chal-lenges that for many Parkinson patients are part of everyday life, can negatively impact the hu-man spirit and one’s confidence and sense of self making it easy to isolate at home avoiding public exposure and the glances of others. Not feeling normal with the inability to function or hide symptoms has the potential to rob one of joy, happiness and enthusiasm for life.

The key to living well with Parkinson’s is to keep your body, mind and spirit up and moving when the disease tries, in every way possible, to slow you down. Start out each day on a positive note with the belief that you can control your thinking. The body will follow the mind! If you want to feel alive, stay out of the recliner! Get up, get dressed and get going if only in your mind. A positive attitude and the

belief that “I have Parkinson’s, Parkinson’s does not have me” will give you the strength, cour-age and confidence to face each day and live it to the fullest. You can only think one thought at a time and you can choose the thought! Think positive!

To be your best with Parkinson’s and avoid feeling out of control, take control of your life and do everything possible for yourself. Eat right, get adequate rest, take your medications on time, exercise daily, manage stress and most important of all, spend time with those you love doing the things you love to do.

At Parkinson Place, a program of the Par-kinson Research Foundation, in Sarasota, FL we offer over 80 free programs each month that keep your body, mind and spirit up and mov-ing focused on meeting the physical, mental, emotional and social needs of Parkinson pa-tients and care partners. All of the programs are evidence based proven to improve func-tion, cognition and sociability.

Please visit ParkinsonPlace.org to see, first hand, what we do locally as well as our inter-national outreach via the websites. Please also visit ParkinsonResearchFoundation.org to see what you can do to help us contribute to the quality of life for the 1.5 million people around the world wanting a better life today with Par-kinson’s disease. Your contributions to the Par-kinson Research Foundation make the world a better place.

Marilyn Tait

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The 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

Chairman’s Column “We Need Your Help to Give Hope to Others”

Stem Cell Transplantation Shows Promise for Parkinson’s Disease

Many 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 iPSC-

Derived 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

W ith the baby-boomers slip-ping into the age range when the risk of Parkin-

son’s disease (PD) is high, there is increasing interest in the effects and benefits of exercise to help both motor and non-motor com-plications of PD. Perhaps this is because the “boomers” have al-ways 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 is abundant and convincing. A re-cent 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.

Traditional exercise modalities, such as strength, flexibility, and aerobic or bal-ance training has been reported by many independent investiga-tions to improve some aspects of mobility, strength and flexibil-ity. 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 associ-ated with reduced walking speed, walking efficiency and pos-tural instability, resulting in a higher risk for falls. Reduced muscle strength and power could be the result of muscle dis-use, as PD patients are known to be physically inactive. How-ever, 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 function-al 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 mo-tion 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).

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

modalities, whereas balance training improved Unified Par-kinson’s Disease Rating Scale (UPDRS) Activities of Daily Liv-ing 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 dev-astating consequence of PD. Recently, several studies examin-ing 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, over-all physical functioning, postural transfers, freezing of gait and functional reach. Previous reports suggested that the combi-nation 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, dura-tion 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.

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 necessar-ily improve balance control adequately. With greater under-standing 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 simultane-ously 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 exer-cise. Furthermore, in the latter study, the tai chi group per-formed 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.

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

Juan Sanchez-Ramos

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WHO CARES!“Simple Solutions & Success Strategies for Parkinson Caregivers”

By Marilyn Tait, Parkinson Educator, Motivator & Advocate

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

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 an-nounces what’s coming next. Create a timeline for the activities of daily living that works for you. Set a time to wake, 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!

AVOID CLUTTER – Take time to go through your home 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!

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, news-

Marilyn Tait

continued on page 5

spatial awareness, balance, strength and flexibility, and physi-cal activity (or even aerobic exercise if the intensity is suffi-cient). Moreover, it is enjoyable and stimulates social engage-ment and peer support. Clinically significant improvements were found in balance, gait, and endurance when comparing the tango, waltz, and fox-trot with traditional exercise inter-ventions. 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 fol-low-up, and the 6-minute walk test deteriorated in the con-trol 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.

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. Neuro-chemical 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-

proved. Moreover, functional MRI performed after a single bout of forced exercise revealed the same change in network activa-tion pattern as that seen between medication states.

Summary: There is a growing body of empirical evi-dence 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-specif-ic problems or disabilities.

2. The exercise should be feasible. Unrealistic time-consum-ing 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.

* 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 [email protected].

Effects of Exercise on Parkinson’s Disease (continued from page 3)

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

MEDICATIONS MADE EASY – Organize medications in a daily/weekly medicine box that eliminates dosing mistakes and the need to remember. Look into those with timers if need be. Restock weekly with or without your loved one. This makes it easy for those medicat-ing 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-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?

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 chick-en. 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 sta-tion, 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.

MINUTE MEALS – Try to make meal planning simple and 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

• Make double amount of one-pot meals, soups and stews• Keep tossed green and pasta salads up front and center• Purchase fruits and veggies already cut and cleaned• Hit the deli hot section and the cold salad bar• Accept all meals handed to you and never say no to take

out or reservations • Should you have a sudden urge to cook a six-course

meal, tune in to the food network and get over it!

NO LAST MINUTE – Make plans early to avoid last minute 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!

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.

MAKE A LIST – Keep it accurate and up to date.• Emergency Contacts to include name, relationship,

address and phone number• Daily Contacts to include Pharmacy, Medical Supply

Company, Home Healthcare Agency, Transport Service, Therapists, Counselors, Clergy and providers you routinely call

• Physicians to include name, specialty, address, phone, nurse and key staff members

• Current Medications to include name of drug (brand & generic) and daily dosage

• Known Allergies to include medications, foods and other adverse reactions

• Medical Problems to include diagnosis, hospitalizations, diagnostic tests, surgeries, special procedures and current treatments; include dates and locations if possible

TAKE NOTES – Keep up front for easy access• Non-Emergency Medical Issues: Make note of subtle

changes that need to be reported at your next doc-tor’s appointment. Include date and description, e.g. Poor Appetite; Problems Sleeping; Loss of Interest; Mild Memory Loss; Occasional Confusion; Periods of Incon-tinence; Skin Issues; Poor Balance or anything else that appears different.

• Pertinent 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.

• Future Medical Appointments: Write down newly sched-uled and upcoming appointments with name, address, phone number and reason

KEEP RECORDS – Make copies of legal documents; Keep 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

IN ADDITION – Don’t forget!• Pick up or ask for a business card at every new appoint-

ment• 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 informa-tion if you’re not there, so keep your notebook in an obvious spot where others can find it.

Message from Marilyn …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!

Simple Solutions & Success Strategies for Parkinson Caregivers (continued from page 4)

http://www .ariannabelle .com/blog/category/ organize/bathroom-organizationposted in bathroom organization,

linen closet organization

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The 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 nor-mal, providing a luxuriant environment for bacteria to thrive. An investigative group of eighteen Italian re-searchers 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 ac-tions: gastric acid, pancreatic enzymes, the physical barrier of the ileocecal valve and the continual movement of foodstuffs through the intestine, all preventing attachment and prolif-eration 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 empty-ing. 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, delayed-on and episodes of no-on time.

Examiners treated patients who harbored bacterial over-growth with rifaximin and re-examined the patients 1 and 6

months later. The team of investigators found the prevalence of SIBO was significantly higher among PD patients than con-trols, 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 with-

out SIBO to those infected with overgrowth and Helicobacter pylori, those with both in-fections had significantly higher prevalence of unpredictable motor fluctuations (8.3% PD pa-tients 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 off-times and more episodes of delayed-on times and no-on times.

With the elimination of intestinal over-growth by treatment with the antibiotic rifaxi-min, researchers saw improvement in motor

fluctuations. Patients receiving the drug reported no side ef-fects related to antibiotic therapy and 14 of the 18 SIBO+ pa-tients 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.

Parkinson’s Disease and Impaired Gastrointestinal Motility

Alpha-synuclein Under Your Skin?

A lpha-synuclein has been the subject of so many articles, it does seem to get “under

your skin”, so to speak! Now a re-search team from Beth Israel Dea-coness 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 be-fore 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 auto-nomic and peripheral nervous func-tions in Parkinson’s disease, so they naturally looked at autonomic skin functions and reactions in this dis-ease. They surmised that a skin bi-

opsy 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 di-agnosis of Parkinson’s disease and 14 non-Par-kinsonian controls. They took skin biopsies from three different locations on their legs and found … alpha-synuclein. Even higher levels of alpha-

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 mea-sure 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 dif-ferentiate Parkinson’s disease from other neuro-degenerative diseases. A small skin biopsy is a safe and simple procedure that could be a big breakthrough as a biomarker to predict Parkin-son’s disease.

Article by Marcia McCallN. Wang, C. H. Gibbons, J. Lafo, R. Freeman.

Synuclein in cutaneous autonomic nerves. Neurology, 2013; DOI 10.1212/WNL.0b013e3182a9f449

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… 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 …

PARKINSON’S DISEASE AND DEPRESSION

Two 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

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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, 2013

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-The-Doctors” 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.

DISTINGUISHED SPEAKERS & TALK TITLES“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.

2014 PARKINSON EDUCATIONAL CRUISE TO THE WESTERN CARIBBEANMARCH 9-15, 2014

APPROXIMATE CABIN RATES PER PERSON BASED ON DOUBLE OCCUPANCY

INSIDE - $830 .85 OCEAN VIEW - $895 .95PROMENADE - $875 .85 BALCONY - $1005 .85 - $1050 .85JUNIOR SUITE - $1525 .85

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

(888) 462-1434 or (941) 627-8795 [email protected]

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!

PRF EDUCATIONAL CRUISE 2014 SAILING MARCH 9, 2014

Sunday, 3/9 FT . LAUDERDALE (Port Everglades) FL --- 5:30pm Monday, 3/10 AT SEA --- ---Tuesday, 3/11 GEORGETOWN, GRAND CAYMAN 8:00am 5:00pm Wednesday, 3/12 FALMOUTH, JAMAICA 7:00am 4:00pm Thursday, 3/13 LABADEE (Cruise Line Private Island) 10:00am 6:00pm Friday, 3/14 AT SEA --- --- Saturday, 3/15 FT . LAUDERDALE (Port Everglades) FL 5:30am