Sleep Matters! for People with Parkinson`s Disease
Transcription
Sleep Matters! for People with Parkinson`s Disease
6370 LBJ Freeway Suite 170 Dallas, TX 75240 (972) 620-7600 www.daps.us APRIL 2015 IT’S TIME FOR THE 7TH ANNUAL NON-EVENT FUNDRAISER! $20,000 Matching Funds Offered for Second Consecutive Year! DAPS is cooking up new ideas for our 7th annual Non-Event Fundraiser, set to coincide with National Parkinson’s Awareness Month. Because this is a “non-event,” you do NOT have to buy fancy clothes for a night on the town or take time out of your busy schedule to attend an event. Instead, you’ll participate by supporting DAPS with a contribution and asking friends and family to join in the fun of creating DAPS’ perfect recipe for success! All contributions help us maintain our programs without charging participants to attend. Giving levels for this year’s Non-Event are as follows: $20,000 + $ 5,000 + $ 1,000 + $ 500 + $ 100 + $ 25 + APRIL parkinson’s awareness luncheon entertainment: Reflections Master Chef Executive Chef Sous Chef Line Chef Short Order Cook Backyard Grill Master See page 2 for bio Join us to kick off this year’s Non-Event! We will honor Reflections for providing DAPS with many years of wonderful entertainment at meetings. Watch for an invitation to arrive soon in your mailbox! PARTNERS IN PARKINSON’S COMES TO IRVING CONVENTION CENTER MAY 16 DAPS is proud to be a local presenting partner for the Partners in Parkinson’s seminar at the Irving Convention Center on Saturday, May 16th, from 9 AM to 3:30 PM. The event is FREE, but registration is required. Breakfast and lunch will be provided for registered attendees. (www.tfaforms.com/354618) Partners in Parkinson’s is a collaboration between the Michael J. Fox Foundation and AbbVie, Inc., a pharmaceutical company. The event features educational seminars and panel discussions. There will also be a resource fair open throughout the day. Please plan now to join us for an informative day! Lunch will be catered by Amore Italian Restaurant. $10 per person. Reservations required. RSVP by Friday, April 10 by mailing a check to the DAPS office or on the website at http://bit.ly/1ABXRu6. Monday, April 13, 2015 12:30 p.m. University Park United Methodist Church 4024 Caruth Blvd (at Preston) Dallas, TX 75225 INSIDE reflections bio 2 art show 5 first tuesday fundraiser 6 sleep matters! 3-4 memorials, honors, donations 6 group schedules 7 pd awareness in social media 5 executive director’s message 6 calendar of events 8 april luncheon entertainment: Reflections Dedicated to impacting and improving the lives of those affected by Parkinson’s disease Executive Director Mike Miles Board of Directors Cindy Weatherall, President Chad Swank, Ph.D., Vice President Joyce Susman, Secretary and Advisory Council Liaison Diana Winkelmann, Treasurer Liza Farrow-Gillespie, J.D. Barbara Glass Ann Heidger Mary Ellen Malone Charles Martin Sandi Pautler Heather Stevens Jim Struble Greg Wood Advisory Council Sarah Atwood Jean Blomquist Ben Casey Carlie Dorshaw-Moe Shirley Hand Charlene Noe Barbara Taylor Medical Advisory Board Shilpa Chitnis, MD, Ph.D. Richard B. Dewey, Jr., M.D. Richard L. Fulbright, Ph.D. Dwight C. German, Ph.D. Jorge A. Romero, M.D. R. Malcolm Stewart, M.D. Gary L. Tunell, M.D. Newsletter Jill Dominguez, Editor The DAPS newsletter is published monthly as an information guide only, and does not serve as legal or medical advice. We welcome your feedback, contributions or requests. Please send to or contact: Jill Dominguez Phone: 972-620-7600 [email protected] www.daps.us · facebook.com/daps.us Submissions must be received by the 1st of the month preceding publication date and are subject to editing. PAGE 2 · DAPS · APRIL 2015 At the start of almost every general meeting, DAPS’ members enjoy the tunes played by Reflections. The band’s members are retired seniors who enjoy playing and wish to contribute to society through music. The band has been playing for DAPS under various names for over 15 years. They started out under the direction of Bill Chamberlin, who himself had Parkinson’s disease. Since 2013, Reflections has been under the leadership of John Honeycutt. “We all love music,” says John, “and although we are not all professional musicians, we know how therapeutic music can be and enjoy providing this to our friends in the Parkinson’s community. We thank you for letting us share our love of music with you.” Members of Reflections are as follows: John Honeycutt is the current director of the band, and a retired nuclear engineer/physicist. John grew up in Las Vegas and played trumpet and baritone horn throughout grammar school, high school, and college. After a nearly 40-year break, John plays trombone and double bell euphonium with Reflections. Dr. Jerry McGrew was the director of the band previous to John Honeycutt. He is a retired ophthalmologist. Jerry plays banjo, fiddle, mandolin and harmonica. Virginia McGrew is married to Jerry; she plays electric bass. Jim Thompson joined the band in 2001. After a career in grocery store management, Jim retired from Albertson’s in 1999. He started playing drums in the 6th grade and began playing them again after a 28-year break. Dr. John Denman plays clarinet. He is a retired urologist and has made several CDs. John Gould retired following 30 years with the National Heart Association. He plays trumpet. Jim Degman plays piano. He also plays with the Kings of Swing band at the Plano Senior Center every Thursday. Bruce Hamberlin is a new addition to the band; he plays clarinet and saxophone. Bruce also has Parkinson’s disease. Harold Poole plays electric guitar. He is a retired architectural engineer and real estate agent. Currently, he is the director of the Dallas Banjo Band. Art Leonard plays tuba and is the oldest member of the band at 91. He had a career in international marketing and traveled the world. He played his tuba everywhere except when he was in the Navy during WWII. Sleep Matters! for People with Parkinson’s by Margaret B. Schroeder People with PD are especially at risk for having sleep problems, including: Insomnia REM sleep behavior disorder Restless legs syndrome Obstructive sleep apnea Excessive daytime sleepiness & sleep attacks In Insomnia The DAPS presenter for March 2015 was Dr. Sonya Merrill of Dallas Sleep Medicine Specialists, PLLC. A show of hands at the meeting revealed that the majority of those in attendance had been asked by their doctors about their sleep, whereas 70% of the general American public say their doctors never asked about their sleep, according to the National Sleep Foundation. “If you often say, ‘I just lie awake looking at the clock ALL night and then I can barely drag myself out of bed in the morning’ then you may have insomnia,” stated Dr. Merrill. The consequences of insomnia are present at night and during the day. Nighttime symptoms include restlessness, frustration, and disturbance of the bed partner’s sleep. During the daytime, you may feel excessive sleepiness, fatigue, depressed mood, anxiety, irritability, memory impairment, difficulty concentrating, and you may be prone to more errors at work or accidents while driving. a survey of the American public by the National Sleep Foundation, 75% of Americans report at least one symptom of a sleep problem a few nights a week or more. In people with Parkinson’s disease (PD), the prevalence of sleep problems has been estimated at close to 100%. There are common behaviors that lead to insomnia and Dr. Merrill suggested that the problem is twofold. there are things we can do to reduce it. Common sleep “The field of sleep medicine is new,” she stated, mistakes include: “starting in the 1980s.” Additionally, people underestimate the importance of sleep, leading to the belief they Misconceptions about sleep don’t need much sleep or that they’re Frequent napping light sleepers. People who snore Variable bed and wake times frequently believe the snoring Sleep problems for Excessive time in bed doesn’t affect them, and only bothers people with PD are Use of sleep-disturbing substances their partner. (alcohol, caffeine, nicotine) before almost universal But sleep is vital to health. The bed consequences of not getting enough and can have Exercise too close to bedtime sleep, called “sleep debt,” can be far-reaching effects Exposure to bright light at night significant, including: Use of bed for non-sleep activities on mental and Increased risk of car accidents (except sex) physical health, Increase in obesity due to an Uncomfortable or cluttered bed relationships, and increased appetite caused by Suboptimal bedroom environment sleep deprivation (e.g., light, noise, temperature, pets) productivity. Increased risk of diabetes and Mental activities (e.g., planning, heart problems reflecting) while in bed Increased risk for psychiatric Clock watching is the enemy of good sleep practices. conditions including depression and substance abuse Dr. Merrill advised, “Listen to your body. Go to bed when Decreased ability to pay attention, react to signals or you’re sleepy, not when you’re wide awake and your remember new information thoughts are racing. Bright light like that of an iPad or iPhone shuts off the brain’s release of melatonin, which is The National Sleep Foundation recommends that adults needed for sleep. If you have trouble sleeping, go to ages 26 to 64 get seven to nine hours of sleep per night another room until you’re sleepy, then go back to bed. and adults over age 65 should average seven to eight De-clutter your bed. Make a psychological boundary around hours. A good night’s sleep allows you to wake up on your bed so that you keep your bed free of distractions. your own, without external stimulus, and leaves you Get up at the same time every day. Wake up time is the feeling alert, refreshed, and more energetic. anchor of good sleep. If you’re diligent and determined, these techniques work.” Sleep continues on page 4 APRIL 2015 · DAPS · PAGE 3 Sleep continued from page 3 When we sleep, our upper airway muscles relax and a partial or complete blockage of the airway occurs. Less oxygen reaches the bloodstream and the brain. When the REM Sleep Behavior Disorder (RBD) brain realizes oxygen is low, it triggers awakening to RBD is defined as one or more abnormal, disruptive take a deep breath and re-open the airway. This cycle behaviors during the Rapid Eye Movement (REM) cycle of repeats throughout the night, resulting in sleep sleep. “During the REM cycle of sleep, normally we are fragmentation, which in turn produces grogginess and paralyzed. We have very little muscle tone, and this is when sleepiness throughout the day. we have our dreams,” explained Dr. Merrill. “The problem in People who might be candidates for an OSA screening RBD is that people aren’t paralyzed appropriately; they act often complain of dry mouth and headaches upon out their dreams.” Dream enactment behaviors may include awakening, grogginess, loss of focus, personality changes vocalization such as talking, laughing, shouting, and and irritability, impotence, and excessive daytime swearing. Movements may include flailing, hitting, kicking, sleepiness. Consequences can be severe such as missed leaping out of bed, and even sexual behaviors or urinating. work, lowered productivity, and falling asleep while driving. If awakened, people with RBD may not recall the behaviors, The medical complications are also serious, including high but they remember having vivid or frightening dreams. It can blood pressure, coronary artery disease, heart attack, also be frightening to the bed partner. Injury to self or the congestive heart failure, atrial fibrillation, stroke, adult onset bed partner is reported in 33-65% of patients. diabetes, and cognitive impairment. According to a study published by the American Academy Treatment for OSA is typically a device called a CPAP of Neurology in 2009, up to half of people diagnosed with (continuous positive airway pressure) which acts as a splint RBD will develop PD within 12 years; however, an RBD to maintain an open airway during sleep. “CPAPs aren’t like diagnosis could predate a PD diagnosis by anywhere from 15 years ago,” explained Dr. Merrill. “They have evolved 10 to 30 years. Dr. Merrill calls RBD “the calling card of and improved just like your phone. There are more than Parkinson’s.” These patients tend to have more of the 100 different masks on the market now. There’s even a autonomic symptoms of PD. She strongly recommends that travel device that’s about the same size as a can of soda,” people with RBD take care to keep the bed and sleep area she said. In those patients who don’t tolerate the CPAP safe. “No sharp corners or edges, objects, or other hazards well, a dental appliance is available. It works best in mild in or around the bed,” she advised. cases of OSA where the problem is worse while lying on the back and the patient is not obese, has a smaller neck Restless Legs Syndrome (RLS) circumference, and a small mouth. RLS is described by the acronym “URGE”: U – Urge to move the legs R – Rest or inactivity brings on symptoms G – Goes away with movement E – Evening is when symptoms are the worst RLS occurs in up to 20% of people with PD. Other risk factors include being female, having a family history of RLS, age, iron deficiency anemia, chronic kidney disease, and taking certain medications including Benadryl® (diphenhydramine), antidepressants, and other psychiatric drugs. Prescription medications can treat RLS, including some dopaminergic drugs that are also used to treat PD, and benzodiazepines used to treat RBD. Obstructive Sleep Apnea (OSA) The most common complaint of OSA comes from the sleep partners, says Dr. Merrill, quoting: ‘”My husband snores really loudly, stops breathing for about 15 seconds, and then snorts and gasps for air. I can’t stand it because I’m afraid he’s going to die in his sleep!” PAGE 4 · DAPS · APRIL 2015 Excessive Daytime Sleepiness Excessive daytime sleepiness is common with PD. Dr. Merrill advises that PD patients seek treatment for underlying sleep disorders such as RBD, RLS, or OSA. Aim for eight hours of sleep per night. Get up and get active if daytime drowsiness is a problem, and consume caffeine in reasonable quantities only before noon. Some medications can help you stay awake such as Nuvigil® or Provigil®. Sleep problems are often under-recognized and undertreated. In people with PD, they are almost universal and can have far-reaching effects on mental and physical health, relationships, and productivity. If you or your partner are having sleep problems, consult your primary care physician or neurologist first. If problems persist, ask to see a sleep specialist. DAPS would like to thank Dr. Merrill for providing us with this informative presentation. For more information on sleep disorders, see the National Sleep Foundation website or contact Dr. Merrill at Dallas Sleep Medicine Specialists. Increasing Parkinson’s Awareness Through Social Media by Pam Michel Did you know that seniors (ages 65 and up) have been the fastest growing demographic using social media for the last five to ten years? In 2014, the Pew Research Center’s Internet and American Life Project found that for the first time, more than half of all online adults aged 65 and older use Facebook. This statistic represents 31% of all seniors! One last suggestion. If you haven’t already done so, please “like” the DAPS Facebook page at www.facebook.com/daps.us. Once you have done that, you can post information on events of interest to our Facebook page, you can share posts from our page, and you can join events on our page to let us know you are coming! You can also tag DAPS in posts from your own page so that others Perhaps you are wondering why this is important. The reason is that social media is an exceptionally effective way can easily find us—just start typing Dallas Area to spread awareness during Parkinson’s Awareness Month. Parkinsonism Society and the DAPS page will pop up in a As the statistics show, age is not a barrier to participating in drop-down box. Click on it and your post will have a link to the DAPS Facebook page! the world of virtual technology. While there has been significant growth in the number of adults using multiple social media sites, such as Twitter, Instagram and Pinterest, Facebook remains the primary site adults engage in regularly. This makes Facebook an easy tool for spreading information about PD during Parkinson’s Awareness Month. Happy posting! Pew Research Center, Social Media Update 2014, http://www.pewinternet.org/2015/01/09/social-media-update-2014/ Some good things to share are your own PD stories, photos, and helpful website or blog links to help educate others about Parkinson’s disease. To help you begin spreading awareness, here are a few posts that you can copy and paste to your own Facebook status update. Feel free to personalize them as you wish. About 1 to 1.5 million people have Parkinson’s disease in the U.S. Help spread awareness in April – Parkinson’s Awareness Month. http://tinyurl.com/mp2bl Parkinson’s disease is more than just a tremor. Learn more about non-motor symptoms at http://tinyurl.com/lgo3c82 Did you know that Parkinson’s disease is the 14th leading cause of death in the U.S.? http://tinyurl.com/6h6qnyn Parkinson’s disease isn’t just a disease of the elderly. Even people under the age of 40 get it. Learn more at http://tinyurl.com/pc73wy6 Did you know that there are specially trained neurologists called Movement Disorder Specialists who treat Parkinson’s disease? http://tinyurl.com/k67x3xz April is Parkinson’s Awareness Month. http://visual.ly/parkinsons In the Dallas, TX area, support can be found for people with Parkinson’s disease and their families at Dallas Area Parkinsonism Society. https://www.daps.us Joyce Saulsbury is a local artist who has Parkinson’s disease. She has led an active life, training and showing horses in the dressage arena and enjoying trap shooting with her husband and sons. Following a diagnosis of Parkinson’s, she began focusing on expressing her love of nature through the art of watercolor painting. Joyce lives by her motto: “Yesterday is history, tomorrow is a mystery and today is a gift. That’s why they call it ‘the present.’” Learn more about her at backward-glances.com. Joyce is a DAPS supporter! She is proud to have her art displayed at this show. Please consider including a visit to see it in honor of Parkinson’s Awareness Month. The show is FREE! Gallery at Midtown 13331 Preston Road Dallas, TX 75240 (Located inside Valley View Center) For more information, visit GalleryAtMidtown.com. APRIL 2015 · DAPS · PAGE 5 MEMORIALS · HONORS · DONATIONS FEBRUARY 2015 In memory of Jerry C. Hubbard From: Linda Jordan Hobbs & Jim Hobbs A message from Mike Miles Executive Director In memory of Autry Light From: Reta Moore One Never Knows In memory of Don Wallen From: Barbara Taylor In memory of Allen J. Hargis From: Juanita & Walter Wagener In memory of Bernard “Bud” Malone From: DAPS Board of Directors DAPS Advisory Council DAPS Staff Donation to DAPS From: Raul Dominguez Paul Headland Mike Miles Jackie Reis Cindy Weatherall Larry & Janice Wilsey General Membership Meeting Attendees DAPS at Preston Hollow (Dallas) DAPS at Trinity (Duncanville) By the time you read this, the moment will have passed and just the memory will remain. Some may say it’s much ado about nothing, but I think not. Right now, I am still basking in the afterglow of my visit with one of our exercise groups. I am so very proud of the work that DAPS does. I have had similar experiences at other DAPS groups, but today it especially hit home. As I watched everyone in the room—group leader, participants, and caregivers—I was so moved. The joy in the room was contagious, and the commitment and dedication to the task at hand was amazing. I had introduced myself, and everyone knew that I was there to observe the group. I seriously doubt, though, that anyone in the room realized the impact they were having on me. Watching everyone in that room, I was encouraged, challenged, and inspired to be the best I could be and to make the most of the day. It really is true—you never know who may be watching. And you never know, moment-to-moment, how your actions may affect others in a positive way. During this Parkinson’s Awareness Month, I hope that we all may be blindsided by some unexpected encouragement, and do not forget that you may be the encouragement that someone else needs. Warm regards, Remember to attend the Half Shells/Fish City Grill First Tuesday Fundraisers! April 7, 2015 from 11 a.m. to 10 p.m. Half Shells Seafood Grill 5800 Legacy Dr. The Shops at Legacy Plano, TX 75024 Fish City Grill 10720 Preston Rd., #1012 Preston Oaks Shopping Ctr Dallas, TX 75230 Stop by for lunch or dinner. DAPS will receive 15% of the day’s proceeds! PAGE 6 · DAPS · APRIL 2015 OCTOBER 2014 Mark your calendar for the DAPS meeting on Monday, May 11! Robert Wells from the World Humor Organization, Inc., will be speaking. His presentations and workshops focus on the power of laughter in health and wellness. Bob was diagnosed with PD in 2010 and had DBS surgery in 2014. You don’t want to miss it! DAPS’ NO-CHARGE exercise · speech therapy · support groups CARROLLTON: St. Andrews Christian Church 3945 N. Josey Lane DUNCANVILLE: Trinity United Methodist Church 1302 S. Clark Rd. Group Exercise: Wednesday...10:00 a.m. to 11:00 a.m. Speech Therapy: Thursday...1:00 p.m. to 1:45 p.m. Speech Therapy: Wednesday…11:15 a.m. to 12:00 p.m. Group Exercise: Monday...3:30 p.m. to 4:30 p.m. No class last Monday of the month Thursday...2:00 p.m. to 3:00 p.m. DALLAS: Baylor Institute for Rehabilitation 909 N. Washington (214-820-9353) Water Therapy: (nominal fee) Wednesday...11:00 a.m. to 12:00 p.m. Finley Ewing Cardiovascular & Fitness Center, Studio 3 5721 Phoenix Drive (214-345-7074) Support Meeting: Last Monday...6:30 p.m. to 8:00 p.m. GARLAND: South Garland Baptist Church 1330 E. Centerville Rd. Group Speech: Thursday...9:30 a.m. to 10:15 a.m. Dance for Movement Disorders: Group Exercise: Tuesday…2:00 p.m. to 3:15 p.m. Monday...10:30 a.m. to 11:30 a.m. Thursday...2:00 p.m. to 3:15 p.m. Thursday...10:30 a.m. to 11:30 a.m. 1st Saturday...11:00 a.m. to 12:15 p.m. Discussion Group: Monday...9:30 a.m. to 10:30 a.m. Lakeside Baptist Church Partners-in-Care Group: 9150 Garland Rd. Thursday...10:30 a.m. to 11:30 a.m. Speech Therapy: Wednesday...10:30 a.m. to 11:15 a.m. PLANO: Group Exercise: Custer Road United Methodist Wednesday...9:30 a.m. to 10:30 a.m. Church 6601 Custer Road Partners-in-Care Group: 2nd Wed...10:15 a.m. to 11:15 a.m. Speech Therapy: Preston Hollow United Methodist Church 6315 Walnut Hill Lane Speech Therapy: Tuesday...11:30 a.m. to 12:15 p.m. Group Exercise: Tuesday...10:30 a.m. to 11:30 a.m. Thursday...10:30 a.m. to 11:30 a.m. MESQUITE: Mesquite Rehabilitation Institute 1023 North Belt Line Rd. Group Exercise: Tuesday...10:00 a.m. to 11:00 a.m. Thursday...11:00 a.m. to 11:45 a.m. Group Exercise: Monday...9:45 a.m. to 10:45 a.m. Thursday...9:45 a.m. to 10:45 a.m. Partners-in-Care Group: Monday...9:45 a.m. to 10:45 a.m. RICHARDSON: Arapaho United Methodist Church 1400 W. Arapaho at Coit Group Exercise: Tuesday...10:00 a.m. to 11:00 a.m. Friday...10:00 a.m. to 11:00 a.m. THPD GROUPS & CLASSES The Movement Disorders Education and Resource Center at Texas Health Presbyterian Hospital Dallas (THPD) (8200 Walnut Hill Lane, Dallas, TX 75231) offers the following. For more information or to RSVP, please contact Kathryn MacDonell at 214-345-4224 or DallasMovementDisorders@ TexasHealth.org. SUPPORT GROUPS PD Patient Support Group 3rd Thursday of each month at 6pm in Room 111 at Texas Health Resources University (THRU). Essential Tremor Support Group 2nd Wednesday of odd months at 1pm in Room 111 at Texas Health Resources University (THRU). Atypical Parkinson's Support Group (PSP/MSA/CBD) 3rd Saturday of each month at 10am in Room 111 at Texas Health Resources University (THRU). Care Partner Support Group 4th Monday of each month at 1pm in the Red Room at Texas Health Resources University (THRU). FITNESS CLASSES Dance for Movement Disorders Instructed by Misty Owens, MFA. Every Tues. & Thurs. 2-3:15 pm; every 1st Sat. 11am-12:15 pm in Studio 3 of the CVC* This class is co-sponsored by Texas Health Presbyterian Hospital Dallas and the Dallas Area Parkinsonism Society (DAPS) and is offered free to individuals with movement disorders. Water Exercise for Movement Disorders In the pool at the CVC* every Monday, Wednesday, & Friday at 11:15 am. (A physician release form and the purchase of a CVC punch card are required. Please call for more information: 214-345-7074.) Caregivers are welcome to attend any of these support groups and exercise classes. *CVC = Finley Ew ing Cardiovascular & Fitness Center, 5721 Phoenix Drive, across Greenville from Presbyterian Hospital, Dallas. 214-345-7074 APRIL 2015 · DAPS · PAGE 7 Dallas Area Parkinsonism Society 6370 LBJ Freeway, Suite 170 Dallas, Texas 75240 (972) 620-7600 Non-Profit Organization U.S. POSTAGE PAID Dallas, TX Permit No. 3255 RETURN SERVICE REQUESTED MARK YOUR CALENDAR parkinson’s awareness luncheon Monday, April 13 - 12:30 p.m.* Find DAPS on the internet and social media *Note the earlier time. Entertainment: Reflections $10/person. RSVP by April 10. open board meeting Monday, April 20 - 1:00 p.m. next month Monday, May 11 - 1:00 p.m. Topic: Laugh as Though Your Life Depended On It Speaker: Robert Wells, World Humor Organization, Inc www.facebook.com/daps.us All General Membership and Board Meetings are held at University Park United Methodist Church, 4024 Caruth Blvd., Dallas, TX 75225. disclaimer: The contents or opinions expressed in this Newsletter are those of the individual writers or presenters and do not constitute an endorsement or approval by DAPS staff. Please consult your personal physician regarding your individual medical problems. @dapsinfo For change of address or corrections, please indicate the changes on this page and mail it to DAPS, or email: [email protected]