Read Summer2008PDNews text version

The Parkinson's Bulletin

June-August

Summer 2008

INSIDE THIS ISSUE:

New Onset Parkinson's Disease: Questions for the Neurologist

New Onset Parkinson' s Disease Insomnia and PD Study March 29 Parkinson's Conference Back in Action Assistive Technology The Science and

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Dr. Lawrence Golbe, UMDNJRWJMS Professor of Neurology, UMDNJRobert Wood Johnson Medical School

If you have recently received a new diagnosis of Parkinson's disease, you have a lot of homework to do. Although the emotional side of you will want to ignore or minimize the illness, the intellectual side of you should tackle it head-on. In fact, taking intellectual control of your PD can help you deal with the emotional stress. malfunction and die off in PD, and where in the brain those cells are. Is there a way to slow, stop or reverse the loss of brain cells?

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Not that we know of, but there are clinical Practice of Speaking trials of drugs that we hope will do this. Loud You should learn something about these Stand Straight, Sit PD is a complicated illness. It eventually may drugs and the likelihood of success from affect many parts of the brain. Even at the point them or others like them over the next few Straight, Feel Better that the classic symptoms such as slowness, years. Parkinson's Unity stiffness and tremor first appear, there is eviWalk-April 26 What does the medication for PD do? dence that the disease has already affected many Upcoming Summer lower parts of the brain that control such func- It conceals the symptoms without, as far as and Fall Events tions as mood, smell ability, blood pressure, we know, affecting the course of the underlying brain cell loss. Your neurologist bowel function, bladder function, erectile funcshould explain which symptoms are likely tion and sleep. Depression and Social to respond to the available drugs, as far Support Study So here are a few questions to ask your neurolo- from all of them do. gist over the course of the first two or three visDiet and Parkinson's What side effects could the medication its. At this stage of PD, visits should occur no Disease cause? less frequently than every two or three months The answer is different for each medication in order to allow you to ask questions of the and in each age bracket. doctor even if no medication is required. Could this be a different Parkinsonian condition that is treated differently than PD or may even be curable? Treatable conditions that can mimic PD include multiple, tiny strokes, the effect of drugs such as certain anti-nausea agents or tranquilizers, normal-pressure hydrocephalus, masses such as tumors or blood clots, and a rare hereditary condition called Wilson's disease. Does the medication's benefit really only last five years, like I read on the Internet? This is a myth, but there is a kernel of truth that produced the myth. Your doctor should explain this complicated issue.

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Scenes from Living Well With Parkinson's Spring Conference Pages 4 and 5.

Are there any exercises I should do? In general, the goal of exercise for PD is to maintain range of motion of the joints and to stay in good aerobic condition. You doctor can suggest ways to do this that are What is causing the symptoms? Your neurologist should explain our current consistent with your age and general medical condition. knowledge of what is making brain cells Continued on page 6

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Coordinator CornerElizabeth Schaaf

Dear Friends, The Summer season is here but I wanted to take a moment to reflect on our spring Parkinson's awareness activities. On March 29, we had our highest attendance to date at our Annual People with Parkinson's and Family Spring Symposium at the Pines Manor in Edison, NJ. Topics included Medical Management with Dr. Michele Tagliati (Mt. Sinai), Lighten up with Laughter: Leslie Gibson (The Humor Project, Inc.), 2008 Unity Walk: Stacie Mishler, and Potential Psychiatric Complications and Parkinson's with Dr. Daniel Weintraub (University of Pennsylvania). For those of you who were unable to attend the program, the conference is now available on loan in DVD or VHS format. You may borrow a copy from our library for a two week period. meeting.

Upcoming Falls events are: Ask the Neurologist About Parkinson's (Oct and Nov) , Newly Diagnosed seminar (Oct 3) , Living Well With Parkinson's Telephone Series (Nov/Dec), Caregiver Conference (October 11) and Parkinson's Disease Management Conference (November 8). More The Fourth Annual Excellence in details to follow in the September Service Awards were presented. Newsletter. During the spring conference. I want to wish you a happy and safe sumThis years recipients of this award mer. I hope to see you soon in the Fall! were Lucile Gleason( Montclair Support Group) and Rose DeFeo Warm Regards, (Cape May Support Group). Rose will be presented with her award Elizabeth Schaaf in June during her support group Coordinator, NJ APDA I and R Center

March 31, 2007 Conference-Special Thanks To:

Staff

Kathleen Johnson RWJUH, Community Education Department

Gift Certificates and Prizes

Ariang, Sayreville, NJ Bonefish Grill , East Brunswick, NJ Carrabas, East Brunswick, NJ Clarion Hotel, Edison, NJ Christies Steakhouse at the Clairon, Edison, NJ Ihop, East Brunswick, NJ Legends Deli & Catering, Milltown, NJ Movado Group Old Man Rafferty's, New Brunswick, NJ ShopRite-Old Bridge, NJ Skylark, Colonial, & Americana Diners Stop and Shop, Old Bridge, NJ Soho on George, New Brunswick, NJ Stress Factory Comedy Club, New Brunswick, NJ

Volunteers

Sheila Aronberg, Lisa Bodner and South Brunswick Girl Scout Troop, Peter Buckley, Anna Buckley, Anne Dalin (photographer) Debbie Hargiss, Annie Konopka, Shirley Hom, Louis E. Imhof, III., Karen Powers, Dick Powers, Barbara Ringk, Claire Salamon, Barbara Tanz, Nikki Taussig, Benton Yip, and Fen Yip. Claire Salamon secured the many, many fabulous door prizes for our conference. Thank you, Claire!

Conference Sponsors

Teva Neuroscience, Medtronic, NJ Chapter American Parkinson Disease Association , UCB, Valeant and Vernalis.

Conference Exhibitors

Beads for Parkinson's Research, Jersey Coast Chapter of American Red Cross, Buckingham Place, Healthcare Depot of Freehold, JKF Rehabilitation Institute, Kessler Institute for Rehabilitation, Medtronic, Parkinson's Unity Walk, Parker at Stonegate, Potomac Group Homes, Right At Home Healthcare, Teva, UCB, Valeant, Vernalis, NJ Chapter APDA, NJ APDA Information and Referral Center.

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President's Notes: Benton Yip, NJ APDA Chapter President

The Unity Walk on April 26Roll Up Your Sleeves and Make it A Beautiful Day

Regardless of the weather outside, our efforts will remain focused towards easing the burden and finding a cure. Why not have some input towards achieving our cure? It will be an extraordinary beautiful day on that day when the cure is announced.

It's beautiful. The early Sincerely, morning had rain. The Benton Yip, NJ APDA Unity Walk was going Benton Yip Chapter President forward regardless of NJ APDA Chapter President the weather. [email protected] Parkinsonians (people with Parkinson's) and New Donation address is: their supporters turned out by the hundred thousands to raise awareness about the illness and to NJ APDA Chapter raise donations for research. This walk appeared PO Box 2026, Edison, NJ 08818 to have a lot more participants than a year ear(732) 632-1737 lier. It didn't mean there were more individuals afflicted with PD, it shows there is more awareness. Parkinsonians are more open to share their story. As I enter my first year as chapter president, my challenge was to increase awareness: awareness about the illness, awareness about our chapter and events, awareness on updates on scientific and educational research, and awareness about fundraising efforts. A rebuilding effort on the chapter level to increase donations has been planned. I am calling all of us to volunteer on future events that raises the awareness about our chapter. Do you play golf? A golf course is available for NJ APDA in Spring 2009. We need volunteers. Do you have children and grandchildren who plan to attend college in 2010? The scholarship for secondary school students who have a parent or grandparent with PD will be available. Again, volunteers are needed. A walk is planned for Fall of 2009. Can you volunteer? If you can organize, use a computer, make phone calls, or make some tangible contribution to increasing awareness about PD or increasing donations for research, start today! Send me an e-mail or note that you want a cure and that you can help us get to that goal by reaching out to NJAPDA.

A Study of Insomnia in Patients with PD

We invite PD patients who are suffering from sleep problems to find out more about this research study. You must be between the ages of 35-85 years old. By volunteering to be a participant you will be providing valuable information to our understanding of effective treatments for this disorder.

Please call us at:

1-877-795-4673

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Annual People With Parkinson's and Family Symposium March 29, 2008 The Pines Manor, Edison, New Jersey

Barbara Ringk (r), Westfield SG leader and Debbie Hargiss( c), Rahway SG leader welcome conference attendees.

David King, MS, PT, Kessler Rehab Institute interacts with attendees.

Lucile and Bill Gleason chat with Dr. Hooman Azmi, of Hackensack Hospital.

Beads by Barbara along with her daughter sell beautiful handmade jewelry. Proceeds go to Parkinson's disease research.

Stacie Mishler, Event Director of Unity Walk answers questions about the April 2008 walk event.

Stress? What stress? Attendees enjoy seated chair massage.

Speaker, Dr. Michele Tagliati (r) Movement Disorder Specialist, Mt. Sinai Hospital, with attendee, Betty Grindlinger.

Speaker, Leslie Gibson, RN (r) of The Humor Project, Inc ® with program attendee.

Presenter, Dr. Daniel Weintraub (University of Pennsylvania) speaking with attendee.

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2008 Spring Living Well with Parkinson's Spring Symposium

Elizabeth Schaaf, NJ APDA Coordinator and Lucile Gleason (Right), 2008 Recipient of the Excellence in Service Award.

Northern NJ Parkinson's Support Group Members (Montclair, NJ) posing with Lucile Gleason, Award Winner.

Benton Yip, President of NJ APDA Chapter and Elizabeth Schaaf displaying Parkinson's month proclamation.

Annie Konopka (Left) 2nd Vice President of NJ APDA Chapter and Event Director, with Nikki Taussig, Treasurer of the NJ APDA Chapter, proudly display $9,500.00 raised from the Have A Heart Parkinson's dinner dance.

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Young Onset

Are there any dietary recommendations?

Dietary manipulations can help avoid the constipation that can result both from PD and from some of its medications.

Parkinson's Disease Resources:

How long before I experience some disability?

This will be a gradual process that will depend not only on Did You Know? your response to medication, but also on what new medications will become available over the next few years. How- APDA operates the nation's only full-time, free-standing, ever, your neurologist can provide statistics based on past information and resource center specifically designed to meet experience in large numbers of patients. the needs of young people with Parkinson's disease. APDA's National Young Onset Center is dedicated to How do I know when it's time to start taking helping young people "Live Well and Stay Strong," despite medication? the physical as well as emotional impact of the disease. Neurologists differ on this issue. Some feel that medication should start at the time of diagnosis, and others wait In addition to expanding current programs and services, the for important interference in one's daily activities. There center is committed to developing new opportunities for eduare pros and cons for both views. cation, networking, and wellness that will help young people, their family members, friends, and healthcare providers manIs PD hereditary? age the disease as effectively as possible. The answer is, "a little." Your neurologist should take a detailed family history. If you have any relatives with PD, Education the risk to your healthy siblings and children is greater than APDA publishes many informational booklets and suppleif you are the only one in your family with PD to date. ments about Parkinson's disease and various aspects of living with the disease. All publications, including the new Young Should I get a genetic test? Parkinson's Handbook and the center's recently re-designed There are commercially available tests for only two of the newsletter, are available free of charge. Another primary several known genes that can cause PD. These account for educational tool is our Web site: www.youngparkinsons.org only a tiny fraction of all PD. You should discuss with through which you can access a wide range of resources and your neurologist what you and your family would do with articles that allow you and those you love to stay informed, the knowledge that you carry one of these defects, should connect with others, and prepare and plan for the future. Visit our Web site often as we will soon re-launch the site in the test be positive. order to provide you with a more interactive and dynamic What should I read to learn more about PD? way of learning about the disease. There are several excellent books on PD for patients and their families. Your doctor may know one or two to recommend or may refer you to one or more of the national PD organizations, which each have detailed printed material that you can download or have mailed to you.

Networking

Our Person-to-Person program offers young people with Parkinson's the opportunity to connect with others who have situations or experiences similar to their own. We also maintain a calendar of events and can connect you with support activities in your area.

SAVE THE DATE!

Getting a Good Start: Newly Diagnosed Parkinson's Disease Program Friday, October 3, 2008 1:00 p.m. to 3:00 p.m. at RWJUH New Brunswick

(more details to follow)

Wellness

Through its newsletter, informational booklets, and Web site, the center offers current information on nutrition, fitness, and treatments--both traditional and alternative--of interest to young people living with PD. For more information call or to register with us, call 1-877223-3801 or visit our Web site at www.youngparkinsons.org. We look forward to hearing from you!

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Assistive Technology Is "Back in Action" for NJ Residents

People with disabilities who want to buy, sell, trade or donate assistive equipment that can enhance daily lives now have access to an Internet site that enables them to exchange their useful devices. New Jersey Protection & Advocacy, Inc.'s Assistive Technology Advocacy Center (ATAC) has launched Back In Action (http://BackInAction.njpanda.org). The interactive website provides a way for New Jersey residents to exchange devices, such as walkers, wheelchairs, power scooters, text telephones, adaptive computer software, and even transport vans. Such devices can enable individuals with a disability to more fully participate in their communities, including at work, in school, and within their home environment. "Our site is designed to put assistive technology (AT) equipment back into the hands of someone who can benefit from it," explains NJP&A program director, Curtis Edmonds. "Let's say `Jeff' in Essex County had a skiing accident last year. He recovered and now, his crutches are collecting dust in his basement. Maybe `Alice' in Cape May has been diagnosed with multiple sclerosis and needs a pair of crutches, but her health insurance won't pay for durable medical equipment. If Jeff lists his crutches on the Back In Action website, he can help Alice get the AT equipment she needs." "Spreading the word about this site is crucial," says Edmonds. "Approximately 1.9 million New Jersey residents have some sort of disability and many of these individuals use AT to help in their daily activities. Since the website launched, 26 people have obtained devices through Back In Action. Yet we feel that is just the tip of the iceberg. Many more people need AT and perhaps as many people have unused equipment that can be put to good use to help others gain greater independence." Kathy Wood, director of the Hudson Branch of Heightened Independence and Progress, Inc., concurs: "Back In Action may be the only game in town for those who need AT but lack the funding. Many individuals with disAbout half of the items are available for $100 or less, with 20 percent being offered at no charge, including shower chairs, amplified telephones, and hospital beds. Anyone can post free classified ads through Back In Action with a description and/or picture of the item for sale. Additionally, individuals may search for needed items and post want ads or e-mail alerts when a necessary item is not listed. Residents without Internet access can visit a local library for assistance with accessing Back In Action online. For a print copy or additional assistance, contact NJP&A's Assistive Technology Advocacy Center at 1-800-922-7233 (in NJ), 609-292-9742, 609-633-7106 (TTY) or use the NJ Relay 711. For additional information about Back In Action, please e-mail the program at [email protected] or visit the website http://BackInAction.njpanda.org. About New Jersey Protection & Advocacy: NJP&A is the private, non-profit agency serving as New Jersey's federally funded protection and advocacy system for persons with disabilities. Its mission is to advocate and advance the human, civil and legal rights of persons with disabilities. NJP&A, which administers eight statewide P&A programs, is part of a nationwide network of federally funded protection and advocacy systems.

abilities who are not in vocational rehabilitation face a major challenge in obtaining AT devices. On the other hand, many AT equipment purchases end up unused because they don't meet the purchaser's need or the disability was temporary. Back In Action is the means for getting AT off the shelf and into the hands of people who need it."

Mayor Kennedy O'Brien (right), Sayerville, NJ Mayor and town council present Claire Salamon (left), NJ APDA Vice President with a Parkinson's month proclamation and to honor Claire for her work in the Parkinson's community.

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The Science and Practice of "Speaking LOUD"

Lorraine Ramig, Ph.D., CCCSLP and Cynthia Fox, Ph.D., CCCSLP

"If you don't talk loud enough ­ people stop Speech therapy: LSVT® LOUD listening." "My voice is alive again!" "If I have no voice, I have no life." - A person with Parkinson's from Denver, CO These are direct quotes from two individuals who live with ParkOver the past 20 years, studies supported by the National inson disease (PD). Research shows that 89 percent of people Institute for Deafness and other Communication Disorwith PD experience speech disorders, including soft voice, monoders (NIDCD) of the National Institutes of Health have tone, breathiness, hoarse voice quality and imprecise articulation. demonstrated that LSVT LOUD is an effective speech As a result, people with PD report that they are less likely to partreatment for people with PD. Those who have used it ticipate in conversations, or to have confidence in social settings, have improved their vocal loudness, intonation and voice than healthy individuals in their age group. quality, and maintained these improvements for up to two years after treatment. Recent research studies have also For years, speech disorders in PD were resistant to treatment. documented the effectiveness of this therapy to improve The effects of conventional treatments ­ whether medical or surarticulation, facial expression and swallowing in some gical ­ were neither significant nor lasting. The development of a people with PD. In addition, two brain imaging studies speech therapy tailored to the specific problems of the person have documented evidence of positive changes in the with PD ,the Lee Silverman Voice Treatment (LSVT® LOUD), brain following the administration of LSVT LOUD. has helped many individuals with PD, giving them new hope for improved communication for work, family and social activities. LSVT LOUD exercises improve vocal loudness by stimulating the muscles of the voice box (larynx) and Speech and Voice Disorders in PD speech mechanism through a systematic hierarchy of exThe inadequate muscle activation that leads to bradykinesia (slow ercises. Focused on a single goal - "speak LOUD!" ­ the movement) and hypokinesia (small movements) in the limbs can treatment improves respiratory, laryngeal and articulatory also trigger a speech disorder. For speaking, the problem with function to maximize speech intelligibility. It does not muscle activation can result in reduced movements of the respira- train people for shouting or yelling; rather, the treatment tory system (reduced breath support), larynx (reduced vocal loud- uses loudness training to bring the voice to an improved, healthy vocal loudness level with no strain. ness), and articulation (reduced clarity of speech). Another cause of speech disorders in PD is a deficit in the sensory processing related to speech. Clinical observations suggest that people with PD may not be aware that their speech is getting softer and more difficult to understand. When "soft speaking" people are told of this, they will often reply " My voice is not too soft! My spouse complains all the time, but he/she needs a hearing aid!" Furthermore, if people in this situation are asked to bring their voice to normal loudness, they will often complain that they feel as though they were shouting, even though they are perceived by listeners to be speaking normally. A third cause of this condition is that people with PD may have a problem with internally cueing themselves to produce speech with adequate loudness. Individuals with PD can respond to an external cue (e.g., an instruction from someone else to "speak loudly!"), but their ability to cue themselves internally to use a louder voice is impaired. These motor sensory and cueing problems have made people with PD particularly resistant to speech treatment. The program is administered in 16 sessions over a single month (four individual 60 minute sessions per week). This unique mode of administration is consistent with theories of motor learning, as well as with principles of neural plasticity (i.e., the capacity of the nervous system

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SAVE THE DATE!!!

Fall Parkinson's Conference in Southern New Jersey

Saturday, November 8, 2008 10:45 a.m. to 3:00 p.m. The Mansion Voorhees, New Jersey Look for details and registration in the Fall Newsletter.

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to change in response to signals), and it is critical to attaining optimal results. The treatment also incorporates sensory awareness training to help individuals with PD recognize that their voice is too soft, convincing them that the louder voice is within normal limits, and making them comfortable with their new louder voice. Patients are trained to internally cue the adequate amount of loudness to make their speech understood. While LSVT LOUD has been successfully administered to individuals in all stages of PD, it has been most effective among those who are in the early or middle stages of the condition. Recently principles of LSVT LOUD were applied to limb movement in people with PD (LSVT BIG) and have been documented to be effective in the short term. Specifically, training increased amplitude of limb and body movement (Bigness) in people with PD has documented improvements in amplitude (trunk rotation/gait), that generalized to improved speed (upper/lower limbs), balance, and quality of life. In addition, people were able to maintain these improvements when challenged with a dual task.

Speech disorders can progressively diminish quality of life for a person with PD. LSVT LOUD empowers people with PD to participate in their treatment in fundamental ways and to gain control over one important and burdensome aspect of their PD ­ the ability to communicate. Dr. Ramig is a Professor at the University of ColoradoBoulder, Senior Scientist at the National Center for Voice and Speech (Denver), Adjunct Professor, Columbia University, New York City and President of the LSVT Foundation and co-founder of LSVT Global. Dr. Fox is a Research Associate at the National Center for Voice and Speech in Denver and Research Lecturer in the Department of Neurology at the University of Arizona. She is also Executive Vice President of the LSVT Foundation and co-founder of LSVT Global. For information on LSVT® LOUD, contact LSVT Global by calling (888) 438-5788 or email [email protected] For a full list of the research studies referenced in this article, please visit www.lsvtglobal.com.

How to get LSVT LOUD

LSVT treatments are specific, standardized, research-driven protocols. Only therapists who have completed 12+ hour training program can deliver LSVT LOUD and use LSVT name associated with their therapy. LSVT LOUD is offered by trained LSVT speech therapists in over 40 countries world-wide. If you are experiencing any changes in your speech or voice, be sure to tell your doctor. Ask for a referral and a prescription for a speech evaluation and treatment. The sooner you obtain a speech evaluation and start speech therapy, the better. To locate a speech clinician in your area, contact the American Speech-language and Hearing Association (ASHA) www.asha.org, or find an LSVT-certified speech clinician by visiting www.lsvtglobal.com.

For a listing of Parkinson's Support Groups in NJ please call

(732) 745-7520.

NJ APDA Chapter's New Mailing Address

Parkinson Disease Clinical Trials

Do you want to learn more about current trials for Parkinson's disease?

Donations may be sent to: NJ APDA Chapter PO Box 2026 Edison NJ 08818 Or call (732) 632-1737

Go to www.pdtrials.org

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Stand straight, sit straight, feel better.

David C. King, PT, MS Kessler Institute for Rehabilitation

Poor posture can lead to a host of problems. It hastens degeneration of the spine, it decreases capacity of the lungs, it can lead to pain or injury in the back and neck and it can degrade your balance to name a few. The problem is that there are forces in play trying to pull you out of good postural alignment. shoulders and neck answer this position by leaning forward, putting pressure on your neck, making it difficult to swallow, difficult to expand your lungs and difficult to speak loudly.

By getting your hips back in the chair (figure A) the back rest of the chair can better support you. You now sit on the part of your pelvis called "the sit bones" with Three reasons your posture may be poor. your low back straight and your head and shoulders First, Parkinson's disease has more effect on the muscles more centered over your body. Pressure is relieved that bend our body (called flexor muscles) than those that throughout the spine, breathing is deeper and more restraighten our body (extensor muscles). Flexor muscles be- laxed`, swallowing and digestion made easier. come tight and want to close down your joints. This pulls your trunk and neck forward, curves your shoulders inward While standing you should not be looking to maintain and bends your legs towards your body. People with Parkin- the "military posture" once taught as good posture. Inson's are basically being slowly folded back into the fetal stead you should try to assume a relaxed neutral posture. One with your head directly over your pelvis and with a position. slight curvature to the spine. Think of having a small Second, the changes that occur with aging primarily occur in puppet string coming out of the top of your head just a the front half of the spine. With osteoporosis the large cylin- little behind the center of your head elongating you. drical bone that comprises the front half of each vertebra Your jaw should feel neutral and your shoulders should (called vertebral bodies) suffer "crush fractures" and lose roughly line up with your ears. height. Then the discs, the dense fibrous material that cushion the spine, dry and lose height as well. If you take height If osteoporosis has already begun to degenerate your out of two structures in the front half of a column, like the spine and pull you forward it's not too late to start working on your posture. If you can even pull yourself a few spine, inevitably that column will arch forward. degrees back towards a neutral posture you will relieve Finally, the lifestyle of us as humans is that of a "flexion pounds of pressure from your spine and slow the degenlifestyle". Most everything we do is oriented to our hands, erative process. our mouths and our eyes. So most everything we do is in What exercises can help? front of us and we lean forward to get close to it. We slouch forward at our computers, we lean closer to the television, Exercises that "open" your chest and help bring your we lean in over our food. shoulders and head back towards neutral can help. All three of these actions work together against the person Strengthening muscles of the upper back with "rowing" with Parkinson's with gravity pulling downward ever faster. exercises begin to pull your shoulders back. Learning to stretch the muscles of your abdomen and the chest and front of the shoulders help lengthen the front of your So what can you do? trunk and relax your shoulders and neck back towards a neutral posture. First, learn to sit correctly. Most people will sit with their hips several inches away from their chair back and then A Physical Therapist can teach you several different exround out their spine to lean back for support (figure B). ercises to strengthen your postural support and stretch This means you sit on your "tail bone", put pressure on your muscles made tight by Parkinson's Disease or by habit. low back and compact your abdomen making it difficult to In the meantime, sit straight, stand straight and begin to digest your food and for your diaphragm to descend to take a feel better. deep breath. The problem is further compounded when your Continued on page 13

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14th Annual Parkinson's Unity Walk New York Central ParkApril 26, 2008

Although the weatherman predicted rain, that did not impede more than 10,000 people from joining together in New York's Central Park on Saturday, April 26th to unite as a passionate and dedicated community to raise money and spirits for Parkinson's disease research. firsts for the Walk. It was announced that the Ubell Prize for Parkinson Journalism Award, an annual $10,000 award, would be given to a journalist for outstanding contributions to the public understanding of Parkinson's disease and related movement disorders. The award was established to honor the memory of Earl Ubell, a distinguished science and medicine writer who died last year of Parkinson's at the age of 80.

Also for the first time this year, the Unity Walk was broadcasted through a live webcast, allowing people around the country not The crowd has been growing since 1994, when Margot Zobel founded the Walk to raise awareness of Parkinson's only the chance to experience the spirit and compassion of the community, but also the opportunity to be engaged and active in disease and funds for Parkinson's research. "There were the day's celebration. The webcast can be viewed for a year on only 200 people walking that day- but we felt we were the Unity Walk website. making history. We raised $16,000, and, as we had pledged, every penny was turned over to research," stated And, as pledged since the inception of the Walk, every penny Margot. raised continues to go directly to Parkinson's research. This is made possible through the Unity Walk's Premier Sponsor and After inspiring speeches from Former Attorney General Proud Partner, Boehringer Ingelheim Pharmaceuticals, the NaJanet Reno and Maryum "May May" Ali, Muhammad tional Sponsor, The Weather Channel, Our Double Diamond Ali's daughter, among others, prize drawings and an- Sponsor, Teva Neuroscience, Our Diamond Sponsors, UCB nouncement of the top teams and individual fundraisers, Group and Valeant Pharmaceuticals International, and others inthousands of people and more than 400 teams carrying cluding: Advanced Neuromodulation Systems (ANS), LSVT signs of support and hope, walked along the tree-lined, Global, Medtronic, Novartis and PatientsLikeMe. wheelchair-accessible, 2-mile circular path under blue All funds raised from the Walk are designated for research and skies, sunshine, and gentle breezes. will be distributed among the major U.S. Parkinson's disease Since its inception, the Unity Walk has built upon the success of each previous year, increasing Parkinson's awareness, and much-needed funds for research, making it the largest grassroots event for Parkinson's disease. This year's Walk is proving to be the most successful yet, and with still another full month left for people to donate for 2008, there is no doubt that the amount raised will continue to increase. foundations, including the American Parkinson Disease Association, the National Parkinson Foundation, The Parkinson Alliance, Parkinson's Disease Foundation, The Parkinson's Institute, Michael J. Fox Foundation for Parkinson's Research, and Parkinson's Action Network.

Parkinson's disease is a gradual neurodegenerative disease that affects more than one million Americans. To find out more about Parkinson's disease and the Walk, please visit our website: www.unitywalk.org. You may also call us at 1-866-PUWCredited with helping increase awareness and the amount WALK (1-866-789-9255) or email us at [email protected] of money raised this year is the "One Step Closer" fundraising guide, which provides helpful tips and tools to support fundraising efforts. Designed in partnership with SAVE THE DATE! Boehringer Ingelheim Pharmaceuticals Inc., the proud partner and premier sponsor for the eighth year, the guide 3rd Annual Taking Care of You, provides information and tools to assist individuals in Taking Care of Me Caregiver Conference their mission to raise awareness and increase support of the Parkinson's Unity Walk in their own community. Saturday, October 11, 2008 This unique tool is available free for download at www. Robert Wood Johnson University Hospital unitywalk.org, and includes creative fundraising ideas, 10:00 a.m. to 3:00 p.m. flyers and additional communication template materials.

More details in Fall (September) newsletter.

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Upcoming Educational Events and Support Group Meetings

Summer/Fall 2008

Parkinson's Support Group Meetings

Evening Parkinson's Support Group Location: RWJUH, New Brunswick 7:00 p.m. to 9:00 p.m.; Hospital Auditorium (unless otherwise noted)

Wednesday, June 19, 2008 Topic: Pathways to Wellness...Using Guided Imagery, Meditation & Breathwork for Stress Management, Healing & Relaxation Speaker: Nadine Roberts, BA, CCLS Robert Wood Johnson University Hospital Wednesday, July 16, 2008 Open Discussion Meeting Wednesday, August 20, 2008 Open Discussion Meeting Wednesday, September 17, 2008 Speaker: John J. Ross, Attorney at Law, Elder Law Attorney Topic Details to Follow

Getting a Good Start: Newly Diagnosed Parkinson's Disease Program

This program is for newly diagnosed persons with Parkinson's disease (diagnosed within the past three years) and their family and friends. Friday, October 3, 2008 1:00 p.m. to 3:00 p.m. at RWJUH New Brunswick, NJ More details to follow.

3rd Annual Taking Care of You, Taking Care of Me Caregiver Conference

Saturday, October 11, 2008 Robert Wood Johnson University Hospital 10:00 a.m. to 3:00 p.m. More details to follow.

Afternoon Parkinson's Support Group Location: RWJUH, New Brunswick 12:30 p.m. to 2:00 p.m. Hospital Auditorium (Unless otherwise noted)

Thursday, June 18, 2008 Topic: Creating Your Positive Environment Are You Encouraging Yourself or Discouraging Yourself? Speaker: Jan Collins, M.Ed., Enhanced Well-Being and Bodywork, LLC

Southern New Jersey Fall Conference Living Well With Parkinson Disease: Fall Symposium

Saturday, November 8, 2008 The Mansion, Voorhees, New Jersey 10:45 a.m. to 3:00 p.m. More details to follow.

Thursday, July 17, 2008 Hospital Large Private Dining Room (Please note room change for this meeting) This group is for people with Parkinson's disease and Open Discussion Meeting family and friend caregivers. Facilitator: Elizabeth Schaaf Thursday, August 21, 2008 11:15 a.m. to 1:00 p.m. (please note the time change for Monday Evenings: 7:30 p.m. to 8:20 p.m. November 10, 17, November 24, December 1 and this meeting) December 8. Topic details to follow. Open Discussion Meeting Registration fee is $10 and $15 for each series. Scholarships Thursday, September 18, 2008 are available. To register, or for more information, call 11:30 a.m. (please note the different time) Caregivers' Connections toll-free (877) 819-9147, or Fran Fall Luncheon, location to be announced. Rod, NJ Outreach Coordinator, at (973) 763-1511. Please call (732) 745-7520 for more details and to RSVP. All are welcome to join us!

University Without Walls and Caregiver Connections present: Parkinson Telephone Support Group, Fall Series

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Continued from page 10

Depression and Social Support in Parkinson's Disease (PD)

A study for PD patients and their families funded by the National Institutes of Health (NIH)

Do you have PD and suffer from these symptoms?

A. B. Figure A.-Neutral Sitting Posture Figure B-Slumped Posture

Getting more and more isolated Feel sad or empty most of the day Difficulty falling asleep or staying asleep Loss of interest in daily activities Unable to concentrate Feeling tired all of the time

Figure A shows good "neutral" sitting posture. Figure B shows "slumped" posture sitting on "tail bone" with shoulders and head forward increasing pressure throughout spine and increasing difficulty breathing, swallowing and speaking. Reprinted from "Textbook of Orthopedic Medicine, 7th edit." By James Cyriax.

HELP US FIND ANSWERS

WEB CORNER

http:// www.youngparkinsons.org

Information for those who Young Onset Parkinson's disease. have

Dr. Roseanne Dobkin at the Robert Wood Johnson Medical School in New Jersey is conducting a 10week treatment study of depression in PD. The study treatment does not involve medication and helps people to change thinking patterns and behaviors that may be related to depression. All research care including an extensive psychiatric evaluation is provided at no cost to those who qualify. A friend, family member, or significant other will also be asked to participate in the

http://www.caregiver.org

Information for caregivers from the Family Caregiver Alliance.

http://www.parkinsonaction.org

Learn about advocacy information related to Parkinson's disease.

study. Participants are paid $20.00 for each study evaluation.

http://www.wemove.org

Comprehensive web resource for movement disorder information and the hub of movement disorder activities on the web. Information for patients, families and health professionals.

For more information, please call Dr. Dobkin at:

732- 235-4051

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TH E PA RKI NS ON'S BU LL ETI N

Diet And Parkinson's Disease

By Nan Millette

The most important dietary advice for a person with Parkinson's is to eat a healthy, balanced diet that includes a variety from the main food groups ­ plenty of fruit, vegetables, complex carbohydrates (like cereals, grains, fruits and vegetables), some protein and fluids. Current general dietary recommendations include maintaining an intake of 25-30 calories per two pounds of body weight, with additional calories if dyskinesias are present. The carbohydrate to protein proportion should be at least 4 or 5:1, and the protein allowance of 0.03 ounces per pound of body weight. Three balanced meals a day are recommended, although some people with Parkinson's may find it easier to manage more frequent smaller meals. If people with Parkinson's already eat a healthy, balanced diet, they may not need to make any dietary changes. end of the day. Foods low in protein should make up the bulk of other food intake. These include, breads and cereals, vegetables and fruit, clear or vegetable soups (not creamed or containing lentils or peas), spreads (honey, jam, vegemite) and sweets. Another way to avoid the protein effect is to take levodopa on an empty stomach (one hour before or after a meal) as long as this does not cause nausea. However, this does not help in all cases and some doctors will not recommend this change in diet. The diet should never be altered in this way without advice from a doctor or registered dietitian. Although protein may be taken amount of protein should not be reduced, as the body needs it for tissue repair and to build the immune system. Most other Parkinson's medications do not have specific instructions about whether they should be taken with or without food.

Weight Management

Having Parkinson's may have an effect on body weight. In some people, movement problems mean less exercise so they put on weight. Excess weight can put a strain on the joints and make movement difficult, worsening Parkinson's problems. If people do put on a lot of weight or are overweight already, they may be advised to go on a calorie controlled diet. However, in most cases, people with Parkinson's find that they lose weight because of loss of appetite, difficulty eating, the extra energy needed to cope with the symptoms and the body absorbing fewer nutrients. Therefore, people with Parkinson's often need to be encouraged to eat more calories. Rather than having bigger portions, smaller tempting meals and snacks at regular times during the day may be more acceptable. High calorie foods like peanut butter, biscuits/desserts and milkshakes can help to increase weight.

Carbohydrates and Sugar

People with advanced disease may find that their dyskinesias become worse after eating foods high in carbohydrate and sugar. However, carbohydrates should not be excluded from the diet, as they are needed to maintain body weight and energy levels.

Fluids

Drinking plenty of fluids (8-10 cups a day) is an essential part of healthy diet and helps to relieve constipation ­ coffee and tea do not count because they are dehydrating. A dry mouth is a common problem in Parkinson's. This can be eased by drinking more fluids, taking frequent sips of water, sucking ice chips, using a mouth spray or an oral rinse. Sucking a sweet or chewing gum can also help to produce more saliva and relieve a dry mouth. Unless advised otherwise by a doctor, people receiving Parkinson's medication can drink moderate amounts of alcohol.

Protein and Medication

If people with Parkinson's have been prescribed levodopa, their doctors will have given them instructions on how this medication should be taken in relation to food. If a high-protein meal is eaten at the same time as the medication is taken, less levodopa will be absorbed into the intestines. Proteins are broken down into smaller molecules called amino acids, which can compete with levodopa (also an amino acid) for transport from the digestive tract to the bloodstream to the brain. Protein can interfere with the uptake of levodopa into the body and the brain, and therefore, reduce the effectiveness of the medication. Matters may improve if the normal daily intake of protein is taken all together in one meal at the end of the day. Foods high in protein should be taken at

Constipation

Constipation is a common problem with Parkinson's, because the illness reduces the action of muscles in the bowel. Regular mealtimes, a balanced diet, plenty of fluids and regular exercise can provide relief. If constipation becomes a more serious problem, medication will be recommended.

Difficulties With Eating

Practical difficulties with eating food can also contribute to poor nutrition. The following tips can help. Continued on page 15

P AG E 15

Continued from page 14 Meal times

Hot meals can be served on a warming mat, in an insulated bowl, or can be reheated during the meal. This stops the food getting cold if eating is a slow process.

Problems With Swallowing

Swallowing may be helped by: Yawning several times before a meal to relax the throat if it tenses up; keeping the chin tucked down to the chest, taking sips of water, maintaining; good posture and a comfortable position while eating, putting only a small amount of food on a fork or spoon. This prevents spills and helps with swallowing. If a semi-solid or pureed diet is required due to swallowing difficulties, a referral to a speech and language therapist and a dietitian is essential. Not all swallowing problems are due to Parkinson's and the cause of the problem should be confirmed before dietary changes are made.

Marty Tuchman (Parkinson's Alliance) with Former US Attorney General, Janet Reno proudly displaying a proclamation from the Mayor of New York City.

Practical aids

Hot drinks can be served in an insulated cup to stop them getting cold. Cups with a lid and spout can stop spillages and help with drinking. People should avoid overfilling cups. Using a straw may help. Weighted cups can help prevent tremor when drinking. Serve the meal on a raised level, e.g. put the plate on a small box or stand, so that the food is nearer the mouth. This helps with transferring the food from the plate to the mouth. Placing the elbows on the table to steady hands/arms when eating can also help. Using an apron/bib with a plastic or easy-clean cloth for the table may help if spillage is a problem. A plate can be placed on a rubber mat to prevent slipping, and a clip-on ring can be added around the edge, to stop any food being accidentally pushed off the edge. Other eating aids include a combined fork/knife, a `rocking' knife that cuts o n e h a n d e d and cutlery that is easier to hold.

"May May" Ali (daughter of Muhammad Ali) with Claire Salamon (1st VP, NJ APDA Chapter) at the Unity Walk on April 26.

Special Foods and Unusual Diets

Certain foods, vitamins or unusual diets may often be advertised as helpful for people with Parkinson's, but in most cases there will be no proof that this is the case. Anyone with Parkinson's tempted by any unusual `dietary therapies' should be encouraged to discuss this further with his/her medical team.

Nan Millete is a freelance dietician who may be contacted via www.dieticianunlimited.co.uk. This article was originally published in the Stanford, California APDA I & R Center newsletter of March 2007.

George Tromer, Person with Parkinson's (back-center) with his friends and co-workers at the Parkinson's Unity Walk in Central Park.

Page 16

NJ APDA Parkinson I & R Center 120 Albany Street, Suite 360 New Brunswick, NJ 08901

Phone: 732-745-7520 Fax: 732-745-3114 Email: [email protected] New Jersey American Parkinson Disease Association Information & Referral Center

Jacob Sage, MD Professor of Neurology Chief, Movement Disorder Clinic UMDNJ/RWJMS Medical Director NJ/APDA Parkinson Disease Information & Referral Center Elizabeth Schaaf Coordinator & Editor NJ/APDA Parkinson Disease Information and Referral Center, and Coordinator, Community Education Robert Wood Johnson University Hospital (732) 745-7520 (732) 745-3114-fax [email protected] Kathleen Johnson Community Education Department Robert Wood Johnson University Hospital (7322) 418-8110 ______________________________ Benton Yip President, APDA New Jersey Chapter [email protected] (732) 632-1737 Please Note New Address for Donations: NJ APDA Chapter PO Box 2026 Edison NJ 08818 American Parkinson Disease Association National Office 135 Parkinson Avenue Staten Island, NY 10305 Phone: 1-800-223-2732 www.apdaparkinson.org

Painters hard at work on their artwork at a recent Painting with Parkinson's art class series, lead by artists, Sandy Frank and Elena Tuero.

Address/Name Correction Form PD Newsletter

NJ APDA Parkinson's Disease Information and Referral Center 120 Albany Street, Suite 360 New Brunswick, NJ 08901 Name (s) _________________________________________ New Address ______________________________________ ________________________________________________ Old Address _______________________________________ New Phone _______________________________________ Email ___________________________________________ Comments _______________________________________

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