2009 Summer Newsltr Parkinson Ali


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2009 Summer Newsltr Parkinson Ali

  1. 1. Southwest Parkinson NEWS Muhammad Ali Parkinson Center at Barrow Neurological Institute® A NATIONAL PARKINSON FOUNDATION CENTER OF EXCELLENCE Summer 2009 Inside The battle against Parkinson’s disease doesn’t only The New MAPC . . . . . . . . . . . . . . . . .Page 3 occur in research laboratories or in your doctor’s The Cost of Long-Term Care . . . . . .Page 4 office. The battle begins at home with you and your families. In order to do well against this progressive Raul Yzaguirre Symposium . . . . . .Page 14 neurodegenerative disease, patients and carepartners The Southwest Parkinson News contains information provided as a service need to be informed about the symptoms it causes, be and is not intended to constitute medical advice or views. Patients should able to communicate these complaints effectively to discuss information regarding medical management with their physician. their neurologist, and to be compliant with the treatments that are prescribed. Taking control of your disease begins with education. Living with Parkinson’s Disease So, I encourage becoming educated about the Dr. Arshia Sadreddin, Movement Disorder Fellow symptoms of PD by attending the educational programs like PD 101 and PD 202 offered by the From Muhammad Ali to Salvador Muhammad Ali Parkinson Center as well as looking Dali…Adolf Hitler to Pope John online or by reading books about Parkinson’s disease. Paul II…actress Mary Jackson to As new symptoms develop, it is important to discuss it politician Janet Reno, Parkinson’s with your physician. It is often useful to attend doctor’s disease (PD) has touched lives of visits with a family member or a carepartner who can people all over the world. communicate with the physician the symptoms you Parkinson’s disease was first formally may be having or difficulties you may be experiencing described by James Parkinson in in day to day activities. Some patients find it useful to 1817 in his famous “An Essay on the keep a log of their symptoms. You should always carry Shaking Palsy”. There are about 1.2 with you an updated medication list including names million people in North America with this disease. of medication, dosages, number of tablets, and the About 50,000 people are diagnosed with PD each year. frequency with which each medication is taken. PD affects men slightly more than women. Parkinson’s disease occurs evenly across all occupations and The goal for each visit with your neurologist is to see if socioeconomic groups. Parkinson’s symptoms include the Parkinson’s disease has progressed and what needs tremor at rest, bradykinesia or slowness of movements, to be done to catch up with the disease in order to rigidity or stiffness and balance and gait abnormalities. optimize quality of life – yours and your family’s. In addition, Parkinson’s disease can have non-motor What we look for on each visit is how the patient is symptoms including mood changes specifically functioning in activities of daily living or things that depression, anxiety, pain, and sleep disturbances such you do each day. Since Parkinson’s disease can affect as vivid dreams with hyperactivity during sleep. As various parts of the body, we look specifically for how symptoms progress, the autonomic nervous system you are sleeping, how capable your memory is, and if which controls the involuntary actions of our organs your mood has changed. In addition, we want to know such as those that regulate blood pressure and heart if there is an activity that you are having more difficulty rate, genitourinary systems and gastrointestinal with compared to your prior visit. This may be change in symptoms, can be affected. Continued on page 2
  2. 2. Living with Parkinson’s Disease Check it Out Continued from page 1 John Argue’s new DVD “Parkinson’s Disease & Activities of your swallowing, handwriting or worsened Daily Living tremor or stiffness. We want to know if you The “Activities of Daily Living” DVD is a great tutorial with clear, have fallen or if you get lightheaded when easy to follow demonstrations to help with every day movement you standup. In addition, your neurologists situations- including getting in and out of the car, getting up and need to know if there have been changes in down from the floor, in and out of a chair, in and out of bed and your urinary control or frequency as well as changing sleeping positions- to name a few. The DVD also changes in your bowel movements or sexual addresses tips for caregivers to help with verbal cuing and hands on function. Moreover, with each visit, we want assistance when necessary. It is a nice complement to the to know if the medications are lasting movement strategies John developed in his “Art of Moving” between each dose or do they wear off program, as the DVD translates his exercises and movement earlier. If you are experiencing large principles into functional, day-to-day activities. The DVD is full of involuntary movements after taking your helpful tips for people with PD and their caregivers- and when put medications, this might be a sign of into practice, these tips will help make life easier and safer. The dyskinesias which tell us we may need to cut DVD is conveniently formatted so it can be viewed in its entirety, or back on your dosage or possibly add another if people choose, they can click on a specific chapter (section) they medication. Some patients may develop are working on (or wish to review) and scroll through that chapter’s cramping. The timing of these symptoms in relation to your medication doses is very menu and select their desired topic. The 55 minute DVD is important. If there are changes in patients’ available for $27.00. For more information, please call (510) 985- behavior such as hallucinations or 2645 or www.johnargue.com. compulsive behaviors, your doctors need to know, as it may be the side effect of one of Renee Le Verrier’s book “Yoga for Movement Disorders: your medications. Rebuilding Strength, Flexibility and Balance for Parkinson’s Disease and Dystonia” Although Parkinson’s disease is a progressive Renee is a yoga instructor in the Boston area who has Parkinson’s disorder, it is not fatal. If complications from disease. Renee has accomplished adapting traditional yoga poses to PD are controlled or minimized such as people with specific challenges. For instance, balance issues are infections or falls, people with Parkinson’s addressed through chair support, and many of the exercises are disease can do well for many years. The field done from the chair rather than standing. Her book is easy to of neurology and our understanding of understand with its clear directions and large photos and its binding Parkinson’s disease are expanding every day. In addition, the number of research studies allows the book to lay flat and open on the desired page. As Renee being done throughout the world is too many testifies “Practicing yoga can help you get back in balance to count. Any day there may be a new emotionally and physically. The non-judgmental, peaceful center medication coming to market that may slow within yourself is a healing place. Yoga is a path to that center. It down the progression of Parkinson’s disease won’t cure the disorder, but it can bring you gently back to yourself.” or be able to tackle its symptoms more The book is available at www.amazon.com and sells for $14.95. effectively. With advances in neurosurgery, deep brain stimulation surgery may be a very Mary Spremulli’s “Vocie Aerobics” ™ DVD good treatment option for some patients. Mary Spremulli, MA,CCC-SLP, is a medical speech pathologist and licensed nurse, with over 25 years of health care experience. Mary The take home message here is that there is developed Voice Aerobics™ - an exercise program focused on breath definitely hope for people with Parkinson’s support, posture and vocal function exercises for improved vocal disease. It is a battle each day for the performance. The DVD combines vocal function exercises with a patients, their carepartners and families. But general workout and provides individuals with an opportunity to the battle can only be won if you have a work-out and strengthen their voice and communication strategies positive attitude, and if you arm yourself on their own, in their own home. The 3-part DVD is available for with information. $20.00. For more information, please go to www.voiceaerobicsdvd.com 2 Summer 2009 • Southwest Parkinson News
  3. 3. The New MAPC orthostatic hypotension. The expanded MAPC will include the addition of dedicated Physical, Occupational and Speech therapists to the team The Muhammad Ali Parkinson Center (MAPC) will accompanied by the necessary treatment areas and a move into a new facility in the Fall of 2009. The 9100 balance lab, a multipurpose room for education and square foot space will be located on the third floor of recreation classes, a resource room with books, videos the Muhammad and Lonnie Ali Pavilion which is and computers and a store featuring educational located on the northeast corner of 3rd Ave and material and adaptive equipment. The Center will Thomas Rd. It will house one of the most offer one-stop shopping for patients. comprehensive Parkinson’s centers in the country. “The new space will allow us to be a model for the rest The clinical side of the center will include 10 exam of the country to demonstrate how integrated care can rooms, a tremor exam room, a Botox treatment room make a difference” says Margaret Anne Coles, MAPC and a tilt room to help evaluate patients with program manager. Welcome Nancy Bivins My name is Nancy Bivins and I Although I am a native of Colorado, I have lived in Phoenix consider it such an honor to be the 29 years. I was definitely destined to live in the desert, because social worker at the Muhammad Ali I don’t mind the heat and I find the desert to be amazing. Parkinson Center. The Center is an Hiking has become one of my favorite activities since there is exciting place, offering programs, and a mountain only 1.5 miles from my house. In the summer I educational opportunities that are usually hike at least a couple times per week before going to helpful and encouraging for those work. As soon as the parking lot at the mountain is open at 5 facing the challenges of PD. a.m. I will be there. One of the benefits of being out that early is getting to see a spectacular Arizona sunrise. I have already been involved in the multidisciplinary clinic, support groups at three different sites and I am scheduled to My door is always open, so the next time you are in the teach Powerful Tools for Caregivers in the West Valley. These Center please stop in and introduce yourself. It will be a are all things that I enjoy very much and I look forward to pleasure to meet you. getting acquainted with the patients and their families. Summer 2009 • Southwest Parkinson News 3
  4. 4. The Cost of Long-Term Long-term care insurance: If long-term care insurance was purchased while the Parkinson’s patient was healthy this would Health Care be a solid financing option. I have many clients who have purchased policies who are now using these policy benefits to By Richard A. White, Esq. pay for care. However, because only healthy individuals with JacksonWhite Elder Law the means to pay the premiums will qualify, individuals with a Parkinson’s diagnosis will not usually qualify or the premium The cost of providing long- would be cost prohibitive. If you are healthy prior to the term health care benefits to purchase of a policy, do your research and carefully read and Parkinson’s patients is a review the policy to see exactly what you are getting prior to major concern to those the purchase. Remember the benefits you can rely on will be afflicted with this disease contained in the written policy and not on what you thought and their families. In-home the insurance agent told you. It may be a good idea to have an care providers can cost independent professional who is familiar with long-term care between $15 to $25 per policies review the policy before you make the purchase. hour, while full-time care at skilled nursing facilities Self-funding: Those individuals who are financially costs on average between independent can utilize savings and pensions to pay for care. I $5,000 and $6,500 dollars generally do not see these individuals until such time as they per month in Arizona. Most of us would find have spent down a significant portion of their savings. I would it difficult, if not impossible, to pay for this suggest that even if the individual is financially well off, a care on a sustained basis without some review of future financing alternatives with a professional assistance. Fortunately, there are program knowledgeable in what is available to supplement the cost alternatives that will assist with these would be a wise investment. For example, there is a necessary medical expenses. considerable effort to market reverse mortgages and inappropriate annuities to seniors under the theme of paying The purpose of this article is to provide a for long-term care. These products may be totally brief review of the major long-term care inappropriate and an independent perspective from someone financing options available to Parkinson’s other than the salesman may be beneficial. patients and their families. To be fair and in the spirit of full disclosure let me first qualify Medicare: Many individuals have the misconception that my remarks by advising you that I am an Medicare will pay for long-term custodial care because this attorney that practices in this area of the law. entitlement program may, and I stress “may”, provide up to 100 Our firm has consulted and worked with days of coverage in a skilled nursing facility. Long-term benefits thousands of clients over the past decade and that exceed these covered Medicare days are not covered under I am slightly biased in what I think provides the program and will require alternative financing. the best means to assist a family struggling Veterans benefits: Veterans who served during a wartime with the cost of care. However, by evaluating period and who were discharged from services under anything the various available options and applying other than dishonorable conditions may also be eligible for those options to your particular monetary benefits under the disability pension and aid and circumstances you should be able to conclude attendance programs. These programs can help pay for the what route is best for you. costs of long-term care. Veteran’s spouses may also be eligible. The dollar amount a veteran receives is based on the type of benefit (i.e. disability pension or aid and attendance), income “It is my hope that with tools like limits, and other objective resources limitations. The highest these, families will be armed with the amount I’ve seen a veteran receive was about $1,800 a month. knowledge necessary to receive the The lowest amount was about $90 a month. The difference in assistance they require.” awards is based on income levels and level of care required. If you think you may qualify, it’s in your best interest to discuss your financial information with someone familiar with Veteran’s benefits so you obtain the maximum amount for your situation. 4 Summer 2009 • Southwest Parkinson News
  5. 5. ALTCS: This is the program that provides the greatest benefit to the individual and is the program Walking with Poles we recommend to most of our clients who require Darolyn O’Donnell, assistance in obtaining and paying for long-term care Recreation Therapy Coordinator benefits. ALTCS stands for the Arizona Long Term Care System. It is Arizona’s Medicaid program. ALTCS provides a way for Parkinson’s patients to receive the assistance they need. A wide variety of services are Approximately 75 people attended MAPC’s available through ALTCS, including: interactive workshop on how to walk safely with poles and use poles correctly for mobility and • Full coverage of acute care services: This includes balance. Jayah Faye Paley, a trekking and doctors, hospitalization, prescriptions, lab work, x- walking expert and author of the DVD “Poles for rays, tests, and specialist treatments. Balance and Mobility”, arrived on the scene with 70 plus pairs of high quality poles which were • Nursing home care: This includes care provided individually fitted to each participant. People in a licensed nursing facility, residential care with PD and their caregivers practiced not only facility, or intensive care facility. the basic essentials of pole walking but also • Home and Community Based Services: This learned mobility techniques for navigating includes home health nursing, rehabilitation, adult challenging elevation changes such as stairs, daycare, personal and respite care, medical ramps, and curbs. Once participants were in transportation, mental health services, stride with their poles, many were pleasantly homemaker services, attendant care, home health surprised how poles helped increase their aids, and delivered meals. confidence with the extra points of contact to • Services for developmentally disabled adults and the ground for balance and how the poles helped children: ALTCS has a branch specifically them to stand taller and facilitate the swinging of designed for developmentally disabled adults and both arms. children, which provides special benefits. The MAPC, in conjunction with Banner Health To qualify for ALTCS, individuals must meet medical and Arizona State University, is currently and financial eligibility requirements. Parkinson’s recruiting people for a pole striding research patients generally meet the medical requirements, but it study to be held in Sun City West with a possible sometimes requires planning to satisfy the financial second location in Scottsdale. Participants will requirements. Because the financial requirements are walk for 45 minute three days a week for 12- complicated, individuals may require professional weeks. The purpose of the study is to determine assistance to guide them through the process. if regular exercise that involves walking with Although I was able to touch briefly on all of the above poles can reduce PD severity and cause favorable methods of helping to finance long-term health care, changes in brain function. If you are interested this should only be the beginning of educating yourself in participating, please call Darolyn O’Donnell on these options. Please take a look at our Web site, at the MAPC - 602.406.6903. If you are www.arizonaseniorlaw.com. This site contains a wealth interested in purchasing Paley’s DVD, please go of information for families who want more information to www.polesformobility.com. on long-term care. In May of 2009, JacksonWhite Elder Law will also be releasing MyALTCS (www.myaltcs.com), a web-based ALTCS application “An early morning walk is a blessing program that guides you through the eligibility process. for the whole day." It is my hope that with tools like these, families will be armed with the knowledge necessary to receive the —Henry David Thoreau assistance they require. Summer 2009 • Southwest Parkinson News 5
  6. 6. Walk the Fight playing music and Registration started. By John Yonushonis Then the part that made us all happy - everyone President Parkinson’s Network of AZ started coming. SCAN LTC Corporation brought 45 employees to support our cause. A wonderful lady People care about us and our ability to enjoy life! As gave a large gift of cash and wished no recognition – president of any organization, one gets very nervous only that the money be used to help Parkinsonians. putting on an event like a Walk in these turbulent financial times. I must say that as a testament to the Before the Walk started, we had the traditional “...the Walk was the most successful we have had...” strength of our Parkinson community, the Walk was speeches. After my thanks to everyone and a word the most successful we have had and the most fun. from Jack, we had a moment that moved everyone to tears. Dr. Lieberman spoke of Rosebelia, a People came from all stages of life either to walk in Parkinsonian who has not walked in two years. That solidarity or join their fellow team members to walk is, she had not walked until she got involved with the in unity for an afflicted person. Creating a team is a Muhammad Ali Center. Not only can she walk but she great way to show the respect one has for the walked up to the microphone and spoke in both individual whose daily challenges are only known by English and Spanish of her thanks and love for the those of us who have Parkinson’s. Muhammad Ali Center. Everyone had tears of joy. The day started beautifully. When I arrived early on Tom Lescault, CEO or SCAN then spoke and started Sunday, the clouds were dissipating and the sun was the Walk. The net result, we will be awarding a check shining brightly. The volunteers, twenty of whom of $20,000 to the Center on April 14th and everyone is were pre-Med students from Arizona State University welcome. arrived and within minutes they had the health fair, registration and the course areas marked. With a little I thank everyone involved – the Board, ingenuity, the Start sign was erected, donated again the volunteers, the sponsors but most of all, this year by the Coors Brewing Company and the the participants. food, donated by Basha’s was laid out. The DJ began 6 Summer 2009 • Southwest Parkinson News
  7. 7. Survey Results • The overall satisfaction with the newsletter was rated 4.3 on a 5 point scale Margaret Anne Coles, Program Manager MAPC • 32% of respondents regularly attend Support Groups; 56% knew where their nearest Support group meets A few months ago the Muhammad Ali Parkinson Center • 80% favored monthly Support Group meetings with sent out a survey to people with PD and their the majority of people supporting afternoon meetings carepartners. The survey asked questions about current • Top topics to be addressed in Support Group programs and services offered by the MAPC, future meetings: Medical/Research Updates, Coping needs and about their carepartner experience. A big techniques, Medication, Exercise and Psychological thank you to all of you who responded. This issues such as depression and anxiety information is invaluable to us as we begin to review our • Most people receive their information about PD from current programs and plan for next year, which for us physicians, books, the internet and MAPC courses; begins in September. people indicated that they would like to learn more about PD through the newsletter and education Here are the highlights of the survey responses. We courses. hope you find them interesting. Carepartners People with PD • The average age of the carepartners that responded to • The average age of the people that responded to the the survey was 70 years and the average length of time survey was 71.9 years and the average length of time since diagnosis of the person they were caring for was since diagnosis was 8 years. 7.6 years. • 64% of the respondents were male • 72% of the respondents were female • 78% of respondents were living with their spouse • 53% rated their health as “Good” or better • 70% rated their health as “Good” or better • The average numbers of hours a day that help, care or • Knowledge about PD was rated at 6.7 on a 10 point supervision was required was 8 hours although scale responses ranged from 0-24 hours. • 64% of respondents had attended educational • 58% of carepartners reported that the person they programs- mostly PD 101 and the Mo Udall annual cared for could be left alone educational symposium; the majority of respondent • Most common problems experienced as a result of have attended more than 1 program carepartnering: Meeting personal needs such as • Usefulness of the information for dealing with PD on personal time and exercise, dealing with dangerous, a day to day basis was rated at 7.8 on a 10 point scale unwanted or difficult behaviors, understanding • 42% of respondents would prefer morning education government programs and communication with programs; 62% morning recreation programs professional providers • 90% were willing to drive at least 20 miles to attend • Services that would be of the most value: Central place education programs; 56% 0f people were willing to to call to find out what help is available and where to drive less than 10 miles for recreation programs get it; PD specific information about cognitive • The top 5 topics of interest: Medical/Research changes, dealing with dangerous, unwanted or Updates, Managing disease progression, Medications, difficult behaviors. Changes in my life , Coping techniques and exercise • Most carepartners were unaware of the specific • 44% of respondents have attended recreation carepartner services provided by the MAPC ( programs, primarily Art of Moving Powerful Tools for Caregivers course, Carepartner • Improvement in symptoms as a result of attendance Support Groups and Social Work Services) was rated at 6 on a 10 point scale • Barriers to receiving carepartner services: Location of • Additional classes of interest: Strengthening, programs, unaware of programs, feeling overwhelmed, stretching and relaxation time of day and depression. • The main reason people did not attend programs was • Carepartners receive their information about PD from that they were unaware of them books, MAPC education programs and Support • 49% of people indicated that their level of interest in Groups. They would like to learn more from the the newsletter was “high” and 52% rated the newsletter and conferences. importance of the newsletter as “Very Important” Summer 2009 • Southwest Parkinson News 7
  8. 8. Back in the Game continued to stay in the game- the game of golf and the game of life. Steve remains very active in spite of disease Darolyn O’Donnell, Recreation Therapy Coordinator progression, and has maintained a positive attitude and fun sense of humor. The Sun City Country Club (SCCC) was a buzz this January with lots of putting, chipping, pitching, driving Tradition has it that the last session of the clinic is always and, to be honest, some occasional shanking and slicing a Golf Skills Challenge and this year was no exception, as the Muhammad Ali Parkinson Center sponsored its although this year’s challenge had an unexpected guest-- annual golf clinic for people with PD. Over the course of rain. The skills challenge brought out the usual the five-week clinic, MAPC staff provided participants competitive spirit of the golfers and the unusual (in AZ) with education centered on golfing and living with PD. colorful umbrellas. Real golfers don’t stop for rain - they play through and play on. For some the rain may have been good luck, as there were phenomenal putts and some exceptionally straight and long drives. The goal of the golf clinic is not about making people with PD better golfers, it is really about getting folks back in the game, at any level. The very first week, MAPC staff quickly verbalized a disclaimer releasing responsibility for any guarantee to improve golf scores, yet it wasn’t long before several of the participants found themselves at the top of their game. Golf scores were falling. One golfer boasted that he was able to beat his regular golf buddy, Participants also received golf instruction from SCCC something he hadn’t done in quite a long while. Sweet. golf pro Steve Lackey, who is truly an authority on golf Even sweeter? Every golfer was back in the game. Rain and PD as Steve himself has been living with PD for or shine. Playing through and playing on. several years. Steve is a terrific role model as he has Parkinson’s Disease and sudden obstructions, and confined spaces. Combating Freezing Episodes The causes of these freezing episodes are unknown. However, there are several things a person can do to help Parkinson’s disease is a neurological disorder that often combat them. Something you might want to consider is impairs a person’s motor skills, speech, and other mobility the use of a laser light, which helps guide the person functions. Parkinson’s disease is caused by a loss of through obstacles, move more comfortably, and increase dopamine producing brain cells. While Parkinson’s disease stride length. Products such as the U Step Walker can cause patients to display a variety of symptoms Advanced Walking Aid combined with the U Step Laser throughout the course of the disease, a common symptom Light, and the Laser Cane have effectively helped combat that appears after a few years is a temporary, involuntary freezing episodes in numerous Parkinson’s patients. The inability to move called freezing. Laser Cane projects a red beam on the ground in front of the patient when pressure is placed on it, and can be Freezing can adversely affect the patient’s mobility. When adjusted according to the patient’s height. The U-Step these episodes occur the person’s legs literally freeze and Walker is the ultimate mobility aid for Parkinson’s patient, his/her feet are stuck to the floor. These episodes can last offering the optional laser light along with brakes that are anywhere from a few seconds to several minutes and activated when they let go of the handle. The u-shaped create a large danger of the person falling at the beginning design provides stability in all directions while the padded or end of the episode due to their unpredictability. People seat gives them a place to rest when needed. Both products suffering from the freezing episodes may encounter are available at several places including situations that ultimately lead to these episodes, such as www.ActiveForever.com. fatigue/stress, walking in crowds or narrow hallways, 8 Summer 2009 • Southwest Parkinson News
  9. 9. Summer 2009 Pull-Out Section Recreation and Education In order to plan safe and effective classes, all classes require pre-registration. Exercise classes are only $5 per class. Education classes are free. For further information and/or to register, please call: 602-406-6903. Avondale • Litchfield Park • Goodyear Exercise Exercise The Art of Moving Exercise Class The Art of Moving Exercise Class Wednesdays 1-2 pm; Jan. 7 - April 30 Thursdays 10-11 am; Jan. 8 - July 30 Apache Wells, Room C, 2274 N 56th St. Skyway Church of the West Valley 14900 W. Van Buren, Goodyear Tai Chi Thursdays 2 classes: Carefree • Cave Creek • North Scottsdale 10-11 am, 11 am-12 pm; Jan. 8 - July 30 Exercise Victory Lutheran Church The Art of Moving Exercise Class 5946 E. University Tuesdays 10-11 am; Jan. 6 - May 19 (University & Recker Road) SonRise Community Church 29505 N. Scottsdale Rd. Phoenix (Scottsdale & Dixileta Dr.) Exercise The Art of Moving Exercise Class Chandler Tuesdays 2-3 pm; Jan. 6 - July 28 Exercise Muhammad Ali Parkinson Center The Art of Moving Exercise Class 500 W. Thomas Road, Suite 720 Tuesdays 2:30-3:30 pm; Jan. 6 - July 28 Village Oaks Assisted Living Voice Class 1919 W. Carla Vista Dr. Tuesdays 3-3:30 pm; Jan. 6 - July 28 (Dobson & Chandler Blvd.) Muhammad Ali Parkinson Center Tai Chi East Phoenix • Scottsdale Wednesdays 1-2 pm; Jan. 7 - July 29 Exercise Muhammad Ali Parkinson Center The Art of Moving Exercise Class Tuesdays 2:30-3:30 pm; Jan. 7 - July 29 Ejercicio en Español Shepherd of the Hills Congregational Church En El Arte del Movimiento Español 5524 E. Lafayette Blvd. Sabados del a 10-11 am (56th St. South of Camelback) Enero 17 a Junio 27 Church of Beatitudes Fountain Hills 555 W. Glendale Ave., Room #14 Exercise The Art of Moving Exercise Class Prescott Fridays 9-10 am; Jan. 9 - July 17 Exercise Fountain Hills Senior Center Mondays, Wednesdays & Fridays; 10-11 am 13001 N. La Montaña Yavapai Regional Medical Center~Wellness Center 930 Division Street Mesa • East Mesa Registration & Information 928-771-4783 Exercise The Art of Moving Exercise Class Mondays 1-2 pm; Jan. 12 - July 27 Red Mountain Multigeneration Center 7550 E. Adobe Road, East Mesa Summer 2009 • Southwest Parkinson News 9
  10. 10. Recreation and Education continued Scottsdale Sun Lakes Dance & Movement w/ASU Exercise Movement & Motion 9:30-10:30 am The Art of Moving Exercise Class Latin Salsa 10:30-11:30 am Mondays 10:30-11:30 am; Jan. 5 - July 27 Tuesdays, begins Jan. 14 Sun Lakes United Methodist Church Skysong 9428 E. Riggs Road (SE corner of Scottsdale Rd & McDowell) Tai Chi Exercise Thursdays 11:15 am-12:15 pm The Art of Moving Exercise Class Jan. 8 - July 30 Tuesdays 10-11 am; Jan. 5 - June 30 Sun Lakes Country Club, Mirror Room Freedom Inn, 15436 N. 64th Street 25601 S. Sun Lakes Blvd. (Greenway & 64th St.) Tempe Tai Chi Exercise Thursdays 10-11 am; Jan. 8 - June 25 The Art of Moving Exercise Class Freedom Inn, 15436 N. 64th Street Thursdays 1-2 pm; Jan. 8 - July 23 (Greenway & 64th St.) First Baptist Church of Tempe 4525 S McClintock Drive Sun Cities Exercise The Art of Moving Exercise Class Thursdays 1-2 pm; Jan. 8 - July 24 American Lutheran Church of Sun City 17200 N Del Webb Blvd. Exercise Art of Moving The Art of Moving Exercise Class (Non-MAPRC sponsored) Mondays 10-11 am; Jan. 5 - July 27 The following classes are also available in the valley at Shepherd of the Hills United Methodist Church the following locations. The Muhammad Ali 13658 Meeker Blvd, Sun City West Parkinson Center does not directly sponsor these (Meeker & R.H. Johnson) classes. Class fees vary. Scottsdale Exercise ~ Art of Moving Thursdays, 10-11 am HealthSouth Outpatient (SW side of the building) Aquatics Mondays & Wednesdays, 12-1 pm HealthSouth Pool HealthSouth, 9630 E. Shea Blvd. Instructor and Contact Person: Melinda Theobald 480-551-5423 10 Summer 2009 • Southwest Parkinson News
  11. 11. Summer 2009 Support Group Calendar Contact Kris Watts at (602) 406-4921 or visit www.maprc.com for detailed information regarding meeting locations, dates and topics of a support group near you. Specialty Groups Caregiver Wellness Fountain Hills Community Center Deep Brain Stimulation (DBS) 13001 N. La Montana Dr. Muhammad Ali Parkinson Center Fountain Hills, AZ 85268 500 W. Thomas Rd Ste 720 1st Monday of the Month, 10:30 am-12:00 pm Phoenix, AZ 85013 Contact: Jim 480-209-8755 4th Friday of the Month, 1:30- 3:00 pm This is for those who have, are going to have or would Caregiver Wellness like to have the DBS surgery Sun Lakes Country Club~Phase 1 Contact: Kris Watts 602-406-4921 or k2watts@chw.edu Sun Lakes, AZ 1st Friday of the Month, 1:30-3:00pm Singing Group Contact: Grace Roth 480-895-1734 or “The Tremble Clefs” Kris Watts 602-406-4921 Scottsdale Senior Center-Granite Reef 1700 N. Granite Reef East Valley Scottsdale, AZ Every Thursday, 4:00- 6:00pm Sun Lakes Contact: Ethel Harris at eartheth@mindspring.com Sun Lakes Clubhouse Sun Lakes, AZ “The Tremble Clefs” 3rd Thursday of the Month, 1:00-2:30 pm Shepherd of the Desert Lutheran Church Contact: Grace Roth 480-895-1734 11025 111th Ave Contact: Ann Kisner 480-895-0152 or Sun City, AZ rwkisner@cox.net Every Wednesday, 10:00-Noon Contact: Patty Hatton (602-406-3840) Mesa Spanish Let's Talk (Platiquemos) Mesa Senior Center East Beatitudes Center D.O.A.R. 7550 E Adobe Rd. 555 W. Glendale Ave Mesa, AZ 85207 Phoenix, AZ 1st Monday of the Month, 1:00-3:00 pm 2nd Saturday of the Month, 10:30-11:30am Contact: Kris Watts 602-406-4921 or k2watts@chw.edu Favor llamar a Claudia 602-406-2453 Tempe Caregiver Groups Friendship Village Tempe, Arizona Caregiver Wellness 3rd Thursday of the Month, 2:30- 3:30 pm Muhammad Ali Parkinson Center Contact: Anne Ahland at Friendship Village 500 W. Thomas Rd., Ste. 720 480-831-3155 Phoenix, AZ 85013 Every Tuesday, 2:00-3:30 pm Scottsdale Coincides with PD Exercise Class Contact Nancy Bivens 602-406-4266 Central Scottsdale Brighton Gardens Caregiver Wellness 6001 E. Thomas Rd., Scottsdale, AZ 85251 Skyway Church of the West Valley 3rd Friday of the Month, 2:00-3:30 pm 14900 W. Van Buren, Goodyear, AZ Contact: Gaye Fillmore 480-239-3759 2nd Thursday of the Month, 10:00-11:00 am Contact: Donna Hepperman, MSW 602-274-5022 Summer 2009 • Southwest Parkinson News 11
  12. 12. Caregiver Groups continued Fountain Hills Kingman Fountain Hills Community Center Kingman Regional Medical Center 13001 N LaMontana Dr. Dell Webb Conference Room Fountain Hills, AZ 85268 1st Wednesday of the Month, 1:00-2:00 pm 1st Wednesday of the Month, 9:00-10:30am Contact: Robert Baron 928-692-4640 Contact: Bruce Florence 480-215-3954 or bflore2406@cox.net Lake Havasu City Contact: Jim Judge 480-209-8755 Senior Center Contact: Elaine Metzger 480-816-9460 450 S Acoma Blvd. Lake Havasu City, AZ 86403 Phoenix 2nd Wednesday of the Month, 1:30-3:30 pm North Central Southern Arizona Beatitudes Center D.O.A.R. 555 W. Glendale Ave, Casa Grande Phoenix, AZ 85021 Robson Ranch 2nd Thursday of the Month, 1:30-3:00 pm Sports Complex Contact: Kris Watts 602-406-4921 or k2watts@chw.edu Casa Grande, Arizona 1st Monday of the Month, 10:30am - Noon West Valley Contact Kris Watts at the MAPC 602-406-4921 Surprise/Sun City Grand Outside of Arizona Cimarron Club 17100 W. Clearview Blvd. El Paso, TX Surprise, AZ Sierra Medical Center Hospital 1st Tuesday of the Month, 10:00-11:30am 1625 Medical Center Drive Contact: Margaret Anne Coles at the MAPC El Paso, TX. 79902 602-406-4208 2nd Saturday of every month Contact: Edmundocastaneda@aol.com Northern Arizona Other Movement Disorders Prescott Trinity Presbyterian Church Multiple System Atrophy (MSA)/ Progressive 630 Park Ave. Supranuclear Palsy (PSP) Prescott, AZ 86303 Muhammad Ali Parkinson Research Center 3rd Thursday of the Month, 9:30-11:00 am 500 W. Thomas Rd Ste 720 Contact: Kay Bolander 928-778-2242 Phoenix, AZ 85013 Contact: Alan Richardson 928-442-1380 2rnd Friday of the Month, 11:00- 12:00am Contact: Kris Watts 602-406-4921 or k2watts@chw.edu Payson First Southern Baptist Church of Payson 302 S Ash St. Payson, AZ 85541 1st Thursday of the Month, 11:30-1:00 pm Verde Valley Verde Valley Regional Medical Center Rehabilitative Services Conference Room 2nd Friday of the Month, 4:00- 5:00 pm Contact: 928-639-6386 12 Summer 2009 • Southwest Parkinson News
  13. 13. Vivir con la enfermedad Para ganar control sobre esta enfermedad usted debe empezar por educarse. Por eso lo invito a que aprenda de Parkinson mas sobre los síntomas de la EP asistiendo a Dra. Arshia Sadreddin, Residente del programa de programas educativos como Parkinson 101 y Desordenes del Movimiento Parkinson 202, ofrecidos por el Muhammad Ali Parkinson Center, así como buscando información en Desde Muhammad Ali hasta el Internet o leyendo libros sobre Parkinson. En la Salvador Dali…desde Adolfo medida que aparecen nuevos síntomas, es importante Hitler hasta el Papa Juan discutirlos con su médico. Es recomendable ir a la cita Pablo II…desde la actriz con el doctor acompañado por un miembro de la Mary Jackson hasta la familia que pueda comentarle al médico sobre los política Janet Reno, la síntomas que usted puede estar teniendo o las enfermedad de Parkinson dificultades que pueda estar experimentando en su (EP) ha tocado las vidas de vida diaria. A algunos pacientes les resulta útil llevar muchas personas en todo el un diario de sus síntomas. Siempre debe tener con mundo. James Parkinson fue usted una lista actualizada de sus medicinas el primero en describirla formalmente en 1817 en su incluyendo el nombre de las medicinas, la famoso escrito “Ensayo sobre la parálisis temblorosa”. presentación, el numero de tabletas y la frecuencia En Norte América hay cerca de 1.2 millones de diaria con que las toma. personas con EP y cerca de 50,000 personas son diagnosticadas cada año con esta enfermedad. La El objetivo de cada visita con su neurólogo es ver si su Enfermedad de Parkinson afecta un poco mas a los EP ha progresado y que necesita hacer para hombres que a las mujeres y se presenta por igual en mantenerse en control de la enfermedad maximizando todo tipo de ocupaciones y grupos socioeconómicos. su calidad de vida y la de su familia. Lo que buscamos Los síntomas de la EP incluyen temblor en reposo, los doctores en cada cita es ver como está funcionando bradiquinesia o lentitud del movimiento, rigidez o el paciente en sus actividades de la vida cotidiana o en entumecimiento y anormalidades de la marcha y el las cosas que hace diariamente. Como la EP pueda equilibrio. Además de estos, la EP puede incluir afectar varias partes del cuerpo, nos interesamos síntomas no motores como fluctuaciones en el estado específicamente en saber como está durmiendo, como de animo, específicamente depresión y ansiedad, dolor está su memoria y si ha cambiado su estado de animo. y trastornos del sueño como sueños vividos e También nos interesa saber si está teniendo hiperactividad durante el sueño. A medida que los dificultades para realizar alguna actividad que antes no síntomas progresan, el sistema nervioso autonómico, le daba problemas. Por ejemplo cambios en su encargado de controlar funciones involuntarias de escritura, dificultad al tragar o empeoramiento de su nuestros órganos como las que controlan la presión temblor o rigidez. Queremos saber si ha sufrido una arterial y la frecuencia cardiaca, el sistema caída o si se siente mareado al ponerse de pie. Su genitourinario y gastrointestinal, puede verse neurólogo también querrá saber si ha notado cambios afectados. relacionados con la orina como incontinencia o frecuencia aumentada al igual que cambios en sus La batalla contra la enfermedad de Parkinson no se movimientos intestinales o su sexualidad. Además, en libra solamente en los laboratorios de investigación o cada visita nos interesa saber si las medicinas le dan en la oficina del doctor. La batalla comienza en casa buen control de los síntomas entre cada dosis, o si el con usted y su familia. Para poder ganarle la pelea a efecto de éstas se le acaba antes de que sea hora de la esta enfermedad neurodegenerativa y progresiva, los dosis siguiente. Si ha notado que después de tomar las pacientes y sus familiares necesitan informarse sobre medicinas presenta movimientos involuntarios los síntomas que esta produce, ser capaces de exagerados, puede ser que esté teniendo discinesias lo comunicar estas quejas efectivamente al neurólogo y cual nos indica que necesitamos reducir la dosis de cumplir con el tratamiento que se les formula. Continued on page 14 Summer 2009 • Southwest Parkinson News 13
  14. 14. Vivir con la enfermedad Second Raul Yzaguirre de Parkinson Continued from page 13 Annual Symposium algunas medicinas o posiblemente The largest Spanish educational event in the country agregar otro medicamento. Otros dedicated to Parkinson disease pacientes pueden sufrir de calambres y la aparición de estos síntomas en relación This was a very special year for our Symposium in many ways. con la hora en que toma las medicinas es Our Raul Yzaguirre Symposium not only was declared the muy importante. Si ocurren cambios en largest educational event of its kind in the country, but also el comportamiento del paciente, como won the sponsorship of the company Teva Neurosciences at a alucinaciones o comportamientos national level. obsesivos, debe dejárselo saber al doctor pues puede tratarse de un efecto Education and fun paired just perfectly... secundario a alguna medicina que esté tomando. Teva Neurosciences, the company commercializing the Aunque la enfermedad de Parkinson es Parkinson medicine Azilect, understands the need for un trastorno progresivo, no es mortal. Si Hispanic specific Parkinson’s initiatives and has launched se controlan las posibles complicaciones resources in Spanish designed to educate and increase de la EP como infecciones o caídas, las awareness about the disease. One of their program’s goals for personas con Parkinson pueden the current year was to put together or sponsor an event to mantenerse relativamente bien por promote PD education in Spanish. What a perfect match muchos años. El campo de la neurología when they found out about our symposium. Teva y nuestros conocimientos sobre el Neurosciences was a great partner that shared our philosophy Parkinson crecen día a día. Además la of service and supported all our efforts to promote this event cantidad de estudios de investigación que and deliver it in a culturally sensitive way. se llevan a cabo en todo el mundo es tan grande que se hace difícil de contar. En The Fiesta Room, at Tradiciones restaurant, was the perfect cualquier momento puede aparecer un location to give the event a Latin festive flair with its colorful nuevo medicamento que retrase la decor and delicious Mexican food. The attendants were able to progresión de la enfermedad o que learn from three great speakers: Dr. Maria Aguilar taught controle sus síntomas de manera más them how to keep their brains healthy, Dr. Abraham efectiva. Con los avances en Lieberman presented the greatest developments in the neurocirugía, la Estimulación Cerebral treatment of Parkinson’s, and Dr. Victor Salazar closed the Profunda puede ser una opción de program with cognitive changes and dementia in PD. Besides tratamiento excelente para algunos the lectures, the Hispanic families had the chance to visit a pacientes. community resource fair, admire the paintings done by the group of Hispanics with PD and their caregivers called En resumen, el mensaje principal es que Comadres/Compadres, and listen to a great motivational definitivamente hay mucha esperanza speech by our guest of honor, Mr. Raul Yzaguirre. para las personas con enfermedad de Parkinson. Los pacientes y sus familias Education and fun paired just perfectly at this symposium, libran una batalla diaria con la where lectures, mariachis, and dancing intertwined to give enfermedad, pero esta batalla solo puede participants the chance to enjoy and learn at the same time. ganarse si se tiene una actitud positiva y Families, staff, vendors, and speakers shared this festive se está bien informado. atmosphere, all together as a big family, the multicultural family of the Muhammad Ali Parkinson Center. 14 Summer 2009 • Southwest Parkinson News
  15. 15. Segundo Simposio Anual Raul Yzaguirre El evento en español más grande del país dedicado a educar sobre la enfermedad de Parkinson (EP) Este fue un año muy especial para nuestro simposio por muchas razones. Nuestro simposio Raul Yzaguirre no solamente fue declarado el evento educativo de este tipo más grande del país, sino que contó con el patrocinio de la compañía Teva Neurosciences a nivel nacional. Teva Neurosciences, la compañía que comercializa la medicina para Parkinson llamada Azilect, entiende que se necesita crear iniciativas específicamente diseñadas para hispanos con Parkinson y por eso ha lanzado diferentes recursos en español destinados a educar y crear conciencia sobre esta enfermedad. Una de las metas que se habían propuesto para este año era diseñar o patrocinar un evento encargado de promover educación sobre Parkinson en español. ¡Enterarse de nuestro simposio y decidir apoyarlo fue una decisión que no se hizo esperar! Teva Neurosciences fue un socio fabuloso pues comparte nuestra filosofía de servicio y apoyó nuestros esfuerzos para promover este evento y llevarlo a cabo en una forma culturalmente apropiada. El Salón Fiesta del Restaurante Tradiciones fue el lugar Teva Neurosciences fue un socio fabuloso... perfecto para darle al evento un toque latino festivo, con su decoración colorida y su deliciosa comida mexicana. Los asistentes aprendieron con tres excelentes expositores: la Dra. María Families had the chance to Aguilar les enseñó como mantener un cerebro saludable, el Dr. visit a community resource Abraham Lieberman les compartió los últimos avances en el fair, admire paintings, and tratamiento del Parkinson, y el Dr. Victor Salazar cerró el programa listen to a great hablando de cambios cognitivos y demencia en EP. Además de las motivational speech by conferencias, las familias hispanas pudieron visitar una feria de recursos comunitarios, admirar las pinturas hechas por un grupo de Raul Yzaguirre. hispanos con Parkinson y sus familiares llamados Comadres/Compadres, y dejarse motivar por el dinámico discurso de nuestro invitado de honor, el Sr. Raul Yzaguirre. Este simposio tuvo el balance perfecto entre educación y diversión, pues las conferencias, los mariachis y el baile se mezclaron para darle a los asistentes la oportunidad de divertirse y aprender al mismo tiempo. Este ambiente fue compartido por todas las familias, el personal del Centro, vendedores y expositores, unidos en una gran familia, la familia multicultural del Muhammad Ali Parkinson Center. Summer 2009 • Southwest Parkinson News 15
  16. 16. Mo Udall Symposium Highlights Kris Watts, Patient Services Coordinator Balance your life! This was the theme at the 2008 Mo Udall Symposium at home. The MAPC in collaboration with Dr. Bork held February 26th and 27th at the Rio Vista have competed a research study looking at the benefits Recreation Center and the Scottsdale Senior Center of Sign Chi Do specifically to Parkinson’s disease. Stay respectively. Over 450 people attended the two days tuned for the results. If you would like information and learned how to balance their physical needs and about Sign Chi Do or finding a class near your home their emotional and spiritual needs as well as learned please contact www.signchido.com or call 480-628- about emerging medical treatments for PD. Those in 3929. attendance also were able to take advantage of the many vendor booths that displayed helpful aids, Next on the program were Dr. Abraham Lieberman resources and products that can improve the quality of and Catherine Minor, Physical Therapist discussing life for both the person with Parkinson’s disease and the physical balance. Why is balance important? The ability carepartner. to keep your balance can help you prevent falls. Dr. Lieberman suggested ways that you help improve your The morning got off to balance. One is called the “Patton stance”; put your positive start with John hands on your hips and point your elbows to the back. Ball, Co-Chair of Team You should notice right away that you are standing up Parkinson motivating us taller. Another activity you can do is to stand on one all by telling about his foot, remember to put a chair in front or behind you in inspirational book, case you need to lean on something. Lift one leg at a “Living Well, Running time and hold it for a few seconds, put it down and Hard- Lessons learned repeat. Do this several times and then switch to the from Living with PD”. other leg. Dancing with a partner is another great Having been diagnosed exercise for balance. Catherine Minor, a physical with PD more than twenty years ago, John has found therapist at St. Joseph’s Hospital and Medical Center his emotional balance by running marathons and discussed other issues that can affect your balance and advocating for Parkinson’s research. His experiences ways to avoid falling. Some suggestions are making and stories tell people about the disease he has not sure the pathways about the disease that has him. If you would like to you are walking on purchase John’s book for $15.00 please call Kris Watts at night are lit up, at 602-406-4921. removing throw rugs, cords and John was followed by Brenda Larson who helped us small objects. find our spiritual balance through Sign Chi Do, a new Other tips include relaxation modality for PD. Sign Chi Do was created avoiding using a and designed by Dr. Anne Borik, an Arizona based step stool, medical practitioner. Sign Chi Do is a new relaxation installing grab bars where needed, placing commonly exercise modality that exercises both the body and the used items on shelves or counters at waist or shoulder brain at the same time. By incorporating sign language height. If you would like a more detailed listing of gesture with breathing, movement, intention and music suggestions please call Kris Watts at 602-406-4921. it is a way of bringing a sense of well-being to the mind, body and spirit all at the same time. Sign Chi Do can To complete the day, Dr. Mark Stacy, director of the be practiced anywhere without special equipment Movement Disorder Center at Duke University and needed. To help us experience the benefits of Sign Chi former director of the Muhammad Ali Parkinson Do, Brenda led us through two prayers that we can do Continued on page 19 16 Summer 2009 • Southwest Parkinson News
  17. 17. • Fight Night XV • Catherine Menor, Director of Foundation Communication Barrow Neurological Foundation A long list of well-known musicians, athletes, actors, GRAMMY Award winning and celebrities joined Muhammad and Lonnie Ali musical director David Foster for Celebrity Fight Night XV on March 28 at the J.W. directed a show that included Marriott Desert Ridge & Spa. Their goal was to performances by Josh Groban, entertain, inspire, and raise funds for the Jordin Sparks, Jon Bon Jovi, Muhammad Ali Parkinson Center at Barrow and Michael Johns, Roy Firestone, other worthy charities. The event raised $6.6 million. Charice, Lucia Micarelli, William Joseph, and Ethan Bortnick. Forest Whitaker sang “Summertime” after a generous bidder offered $100,000 to the Celebrity Fight Night to hear him sing. The live auction featured such items as dinner at Reba McEntire’s Beverly Hills home ($600,000), dinner with Josh Groban in Beverly Hills ($375,000), and a one-of-a-kind customized Tony Hawk DUB edition 4WD Jeep Wrangler ($100,000). A crowd of 1,200 attended the evening gala, which The Celebrity Fight Night Foundation is a non- included cocktails, a silent auction, an elegant profit organization that was founded in 1994 by dinner, an exciting live auction, and a dazzling live Jimmy Walker to support the Muhammad Ali show. Parkinson Center and several other charities. Celebrity Fight Night has raised nearly $60 million A high point of the event was the presentation of in 15 years. the Muhammad Ali Celebrity Fight Night Awards to leaders in the sports, entertainment, and business communities who best represent the qualities of the Champ and his fight to find a cure for Parkinson’s disease. The following awards were presented: • Entertainer Award – Oscar winning actor, director, and producer Forest Whitaker • Sports Achievement Award – Olympic Gold “Celebrity Fight Night’s ongoing support makes a Medalist swimmer Michael Phelps tremendous difference for the Muhammad Ali • Sports Leadership Award – Arizona Cardinals Parkinson Center,” says Abraham Lieberman, MD, quarterback Kurt Warner director of the MAPC. “Their support is the • Entrepreneur Award – businessman and backbone of so much of what we do—from philanthropist Stewart Rahr. education and exercise programs to support groups, the Parkinson Registry, and Ali Care. Rahr surprised the crowd by donating $2 million Without the yearly contribution from Celebrity to Celebrity Fight Night during his acceptance Fight Night Foundation, we would be unable to speech. offer all that we do.” Summer 2009 • Southwest Parkinson News 17
  18. 18. Parkinson Data Registry Update Patty Hatton, Parkinson Registry Coordinator The Parkinson’s Registry at the Muhammad Ali mechanism to gather this data. On March 5, 2009, Parkinson Center has collected health, socioeconomic Congressman Chris Van Hollen, with the other Co- and Quality of Life data on over 3,200 people with PD Chairs of the Bicameral Congressional Caucus on since November of 2003. The Registry is a longitudinal Parkinson’s Disease and the Congressional MS Caucus, study to track how people are managing their PD over introduced the National MS and Parkinson’s Disease time. The collection of data on non-motor symptoms Registries Act, H.R. 1362. This bill will establish and issues relating to quality of life is instrumental to national Multiple Sclerosis (MS) and Parkinson’s disease researchers, healthcare policymakers, and clinicians registries at the Agency for Toxic Substances and disease seeking additional information to make qualified Registry (ATSDR) at the Centers for Disease Control decisions regarding healthcare, best treatment practices and Prevention (CDC). The National MS and and allocation of resources. However, in order for this Parkinson’s Disease Act will create, for the first time, a information to accurately represent the PD population separate, permanent, and coordinated MS and in the United States, membership must be in large Parkinson’s disease national registry. Currently, there is enough numbers with representation from all fifty states not accurate information on how many Americans are to reflect current national estimates of the PD living with Parkinson’s disease, and why. This lack of population. Although accurate numbers are not basic knowledge impedes Parkinson’s research, available, estimates range from 1 million to 1.5 million programs, treatments and services. At a minimum, Americans currently living with PD. As you can see, accurate information about the incidence and Registry membership does not come close to prevalence of Parkinson’s disease will assist in planning approximate the population of people living with PD. future healthcare needs, detect changes in healthcare practices, assess disease burden, promote advocacy, and support a broader range of research initiatives. The Participation in the MAPC Parkinson’s Registry is registries will rely on existing databases, such as voluntary and increased membership is dependent Medicare, VA, state registries, and private data bases, to upon grassroots efforts of physicians, healthcare determine the incidence and prevalence of MS and providers, Support groups, and outreach efforts by the Parkinson’s disease. MAPC. People with PD also can find the Registry online when searching for information on PD, or by reviewing PD studies at clinicaltrials.gov. The Registry The MAPC fully supports the National MS and is actively engaged in recruiting new participants to Parkinson’s Disease Registries Act, and will work more accurately represent the PD community by alongside other advocacy groups to promote passage of reaching the goal of 20,000 participants over the next this legislation. It is our belief that the key to a cure for five years. However, because of the voluntary nature of PD is through working together and utilizing all our the Registry, the best efforts will invariably miss a large resources for the common goal. A national registry will portion of the PD population in the United States. provide the tools needed to reach this goal in the most Therefore, it becomes paramount for our registry to efficient and expedited manner possible. We encourage collaborate and form relationships with other research you to find out more about the national registries bill by organizations to increase the available pool of data on visiting the Parkinson’s Action Network online at the range of issues affecting those living with PD. www.parkinsonsaction.org. PAN also has information on how you can lend support to this important legislation. Because of the tremendous and urgent need for accurate information on Parkinson’s disease, legislation on the national level has been introduced to create a 18 Summer 2009 • Southwest Parkinson News
  19. 19. Mo Udall Symposium Highlights forward? Join a clinical trial.. Several studies mentioned Continued from page 16 in this article are being done at the MAPRC. If you would like to get more information about these studies and Center discussed emerging medical treatments that we determine if you qualify please contact Lynn Marlor, could look forward to. Currently there are studies being MSN at 602-406-6259 or Ina Lieberman at 602-406-7339. done across the country looking at diagnostic markers, disease modifying agents, as well as disease restoring Those attending the day long conference left the day agents, and new therapies for PD symptoms. Disease with renewed hope about what therapies are in the modifying agents currently being studied include pipeline as well as a new sense of “balance” by hearing CoQ10, Creatine, Inosine, and Minocycline to name a the inspirational John Ball, the spiritual inspiration of few. Rasagiline or Azilect is being studied for the Sign Chi Do followed by practical tips on physical possibility of slowing the progression of the disease. balance and preventing falls. For those of you who were Current studies are also looking at gene therapy and cell unable to attend the event, we have handouts of the transplants as well as medications that can help with materials and talks if you would like to have it sent to psychosis or dyskinesias. In the last two decades twelve you. Please call Kris Watts at 602-406-4921 to receive new Parkinson’s medications have been introduced that information.We look forward to seeing you next compared to just four in the four decades prior to that. year at the symposium. How can you help with moving Parkinson research Clinical Research Status The NET-PD LS-1 study will test the ability of the drug creatine, to slow the received medication for Parkinson disease for less than 90 days. Another Lynn Marlor, BSN, MSHS clinical decline of Parkinson’s disease. objective of the study is to examine whether treatment with CoQ delays Barrow Neurological Movement In relatively small and brief studies in the onset of disability requiring Disorders Clinical Research people with Parkinson’s disease, dopaminergic therapy. Department is presently conducting 3 creatine was studied as an agent that clinical research projects. could potentially alter the long term In a previous NIH supported phase II progression of Parkinson’s disease. trial there was a positive trend for The first study is sponsored by Acadia Doctors now intend to carry out a large treatment with CoQ10 to slow the Pharmaceuticals. It focuses on trial to continue looking at the safety of progressive impairment as measured Psychosis in Parkinson’s disease and creatine and to see if it is effective in by the UPDRS. The new phase III trial patients experiencing hallucinations slowing clinical decline in people with is designed to confirm and extend the and delusions. Psychosis is perhaps the Parkinson’s disease. Patients diagnosed results of the phase II study. most difficult Parkinson’s disease with Parkinson’s disease within 5 years symptom to treat and can occur in 20 and who are being treated for the If you are interested in participating in to 40% of patients in the advanced disease may be eligible. any of these 3 studies please call Lynn stages of the disease. To be included in Marlor, BSN, MSHS Research Nurse this study the patient must have The other study “Effects of Coenzyme Clinician at 602-406-6250. If a study is moderate to severe PD for at least 1 Q10 in Parkinson’s disease” (QE3) will not offered at the present time that will year. They must also have visual and/or evaluate the use of two dosages of meet your needs you can be added to a auditory hallucinations or delusions coenzyme CoQ and placebo on waiting list. You will be contacted when during the last 4 weeks. progressive disease impairment of a study becomes available. subjects with early Parkinson disease. Most Parkinson’s disease treatment There is no cost for any of the studies. trials focus on treating the symptoms The QE3 study will last 16 months with All clinic visits, tests and medications of the disease. We are presently 7 visits to the Movement Disorder are paid for by the study sponsors. enrolling in 2 studies to assess agents Clinic. It will include subjects with PD Abraham N. Lieberman MD, Richard that have the potential to slow the who have not yet developed sufficient S. Burns MD and Guillermo progression of PD. They are the NET- disability to require treatment with Moguel–Cobos MD are the Barrow PD LS-1 and QE3 studies. dopaminergic therapy. A patient may Movement Disorder Research Clinic also be entered into the study if they Primary Investigators for these studies. Summer 2009 • Southwest Parkinson News 19
  20. 20. CHW Arizona Non-profit Org. Muhammad Ali Parkinson Center U.S. Postage Resource Center PAID 500 W. Thomas Rd, Ste. 720 Permit No. 685 Phoenix, AZ 85013 Phoenix, Arizona Address Service Requested This is how your name appears on our mailing list. Please notify us of any errors and/or duplicate mailings by returning the attached mailing label to us or by including your account number appearing on your mailing label with all correspondence. If you would like to receive a free subscription to Southwest Parkinson Report, please contact a MAPC staff member or call 602-406-4931 to register. Without these gentlemen, there would be no Barrow Neurological Institute. Charles Barrow’s gift in 1959 enabled Philanthropy works. Dr. John Green and St. Joseph’s to build the Our job is to show you how. Barrow Neurological Institute. Please contact the Office of Philanthropy at St. Joseph’s Hospital and Medical Center (602-406-3041) for more information. P.S. We are very tax deductible. The Southwest Parkinson Report contains information provided as a service and is not intended to constitute medical advice or views. Patients should discuss information regarding medical management with their physician.