2700 SW Freeway #296 • Houston, TX 77098 • ph 713-626-7114 • fax 713-521-3964 • www.hapsonline.org • [email protected] What is Atypical Parkinsonism? MARCH 2016 By Joohi Jimenez-Shahed, MD INSIDE THIS ISSUE: Article: What is Atypical Parkinsonism? continued 2-3 Griswold Cares Foundation 3 Announcements 3 Marathon Wrap Up 4-5 HAPS Exercise & Support Group Schedule Insert Article: Potential New Drug Shows Promise for Neuroprotection 6 Now Enrolling—PEP 6 Pancakes for Parkinson’s 6 Contributions & Tributes 7 Please check the insert for changes to HAPS groups beginning this month! STAY CONNECTED... Generally speaking, the term “atypical parkinsonism” refers to a group of conditions in which some signs or symptoms that are associated with regular, garden-variety Parkinson’s disease are present, but in which there are also features that are unusual for this condition. It is these unusual features that tend to predominate and create difficulties with how patients respond to routine treatments for Parkinson’s disease (PD). Before digging deeper into “atypical parkinsonism,” let’s review “typical” PD. There are four major features of “parkinsonism.” The term “parkinsonism” is used to refer to a collection of symptoms—from there we can consider whether or not a person has PD or something else. Parkinson’s disease is the most common reason for parkinsonism. Features of parkinsonism include tremor (typically a resting tremor), rigidity (stiffness of the muscles that occurs in a specific pattern), bradykinesia (slowness and irregularity of movements), and postural instability (loss of balance on the “pull test”). In the clinic, when we are examining patients, we look for at least two of these four symptoms in order to say that parkinsonism is present. However, we do not diagnose an individual with PD only on the basis of these features. We often like to know whether or not the symptoms started on one side, how quickly they have been progressing, whether they respond to typical Parkinson’s medications, and whether any “red flags” are present that would indicate a diagnosis of something other than regular PD. What are some of the “red flags?” The first of these “red flags” is the presence of significant cognitive problems that start before or soon after the onset of any parkinsonism. This may include issues with thinking, memory, orientation in time or space, language, processing speed or decision making. We are also particularly concerned with the presence of any hallucinations either before treatment with Parkinson’s medications or very prominent ones soon after starting treatment. If these types of symptoms exist, a person may actually be suffering from Lewy body dementia rather than regular PD. Some may ask why this distinction is important. Patients with PD may also experience cognitive difficulties, but this is more likely a late complication of the disorder. That means it is more likely to occur several years after the onset of parkinsonism. Patients with Lewy body dementia tend to have a harder time tolerating the medications that are used to treat PD, due to a greater risk of developing hallucinations. As a result, it becomes difficult to balance the medications that are needed to treat the movement problems with medications that are needed to treat the side effects. Dementia medications and antipsychotics Continued on page 2 are often necessary. On the other hand, some individuals with Lewy body dementia may have more cognitive issues than parkinsonism, and it is more imperative to address those issues than focusing on improving problems with movement. Another “red flag” that we want to look for is the early presence of problems with balance and falling. Generally speaking, patients with regular PD will start experiencing these issues after they have developed obvious tremor, rigidity or bradykinesia. If an individual reports that their Parkinson’s journey began with significant problems with walking, balance or falls, we would become concerned about a condition called progressive supranuclear palsy (PSP). In order to diagnose somebody with PSP, the patient should have evidence of abnormalities with the way their eyes move. This is sometimes very subtle, and patients may not even be aware that these problems exist. Some complaints that patients may experience include difficulty reading from line to line, difficulty looking down when bringing food to their mouth, or trouble turning just their eyes to look in different directions. However, a good neurologic examination should be able to identify these problems even if they are early and subtle. If present in conjunction with a history of early falls and parkinsonism, these findings would be enough to diagnose a person with PSP. The importance of distinguishing this condition is that patients with PSP generally do not respond very well to levodopa, despite the fact that they can have very significant gait and balance problems. This can become very frustrating for patients and their caregivers because patients are at high risk for injuries. In addition, individuals with PSP may be more prone to mood changes, certain cognitive problems, and swallowing problems. In general, the progression of this condition is very different from what would be expected with typical PD, and patients can become disabled much more quickly. The third “red flag” that is often assessed in the clinic is the presence of significant problems with certain automatic body functions. There is a dedicated part of everyone’s nervous system that controls things like blood pressure, bladder function, bowel movements, sweating, and sexual function. Collectively, this is termed the “autonomic nervous system.” Patients who have problems with their autonomic nervous system are said to have “dysautonomia.” Patients with PD are likely to have some mild issues in any or all of these areas. Although they may progress in severity as the PD progresses, they often won’t become a major part of the management strategy until later. If an individual experiences very obvious problems with bladder control (e.g., having full-blown incontinence), or with low blood pressure after standing to the point of nearly or actually passing out (something called “orthostatic hypotension”) early in the course of their parkinsonism, we become concerned about a different 2 | HOUSTON AREA PARKINSON SOCIETY condition called multiple systems atrophy (MSA). MSA is important to recognize because in some cases, it can really look very similar to regular PD, and patients may react very similarly to Parkinson’s medications. In other cases, patients may have or develop major problems with balance, called “ataxia.” In either case, the difficulty that patients with MSA experience with their blood pressure or bladder can very significantly impact their quality of life, beyond any problems they may have with mobility. Sometimes these symptoms become the focus of management rather than the movement problems. Similar to PSP, disability in MSA can progress much more rapidly and differently than in regular PD, and the mobility problems may become less responsive to levodopa over time. Patients with MSA may have additional problems with their breathing, their voice, or their swallowing that may require additional measures for treatment. The fourth “red flag” is the presence of something called “apraxia.” This term refers to a problem with the messages from the brain to initiate a movement getting disrupted. The person knows what they want to do, but cannot get their limb or other body part to do it. For some people with regular PD, it may seem that they have this problem, because it is hard get their limb to react as quickly as they would like. However with true apraxia, the signals do not get there, and it is either very effortful or sometimes impossible for patients to execute a command to that limb. As a result, it may look like patients are “ignoring” their arm, or that they stop using it as much as the other side. When apraxia involves the legs, patients have difficulty initiating gait, often worse on one side compared to the other. Although this may seem similar to gait freezing, it is not overcome with tricks or visual cues, like freezing can be. Patients with apraxia in combination with their parkinsonism most likely have a condition called corticobasal degeneration (CBD). CBD is also important to recognize because once again, patients do not have that robust response to levodopa compared to patients with regular PD. Their symptoms progress much more rapidly, and they may develop particular problems with stiffness or spasticity of the affected side that are very different from the rigidity of parkinsonism. In addition, patients may develop mood issues, language dysfunction or cognitive problems that further contribute to disability. The last “red flag” is a known history of exposure to medications that can block the effects of dopamine. These are often medications that are used to treat psychiatric symptoms, such as antipsychotics, or used to treat certain gastrointestinal disturbances such as nausea or reflux. When people are exposed to these types of medications, they may develop parkinsonism while receiving the medication. If the offending medication is stopped, it may take several months for the side effects to resolve. In this case, a person is said to have “drug-induced parkinsonism.” Anybody who has experienced persistent parkinsonism beyond six months of stopping a medication like this should be checked for consideration of underlying PD. In reality, there are several other things that we do consider beyond the “red flags” mentioned above, which, if present, may point to other conditions that mimic PD. Some of the conditions mentioned here, and others, may also have telltale signs that can be seen on brain imaging tests, such as an MRI. It is always important to inform your treating physician about all of the symptoms that you are experiencing or request an evaluation with a specialist. Features of particular concern include a rapid progression, or insufficient response to adequate doses of levodopa. Although the possibility of “atypical parkinsonism” can be a scary idea for patients who are previously diagnosed with Parkinson’s disease, it is important to remember that these Griswold Cares and Gives Back conditions are much less common than PD itself. Also, patients with regular PD frequently have mild features of these other conditions. It is a matter of degree and course of time to decide if there is enough to be concerned about atypical parkinsonism. A careful re-examination of the history, progression, non-movement symptoms, imaging, and response to medication should be able to provide reassurance about whether or not atypical parkinsonism is present. Joohi Jimenez-Shahed, MD is Assistant Professor of Neurology, Associate Director Neurology Residency Program and Director Deep Brain Stimulation Program Baylor College of Medicine in Houston, Texas and a member of the Parkinson's Disease Center and Movement Disorders Clinic. She is board certified by the American Board of Neurology and Psychiatry and specializes in the care of patients with movement disorders. Dr. Jimenez-Shahed is the recipient of numerous honors and awards. She is the author of many publications and is an active member of the HAPS Medical Advisory Board. Houston Area Parkinson Society recently received a generous contribution from The Griswold Cares Foundation, a private charity established by Griswold Home Care to further the company’s belief that care for the elderly and disabled should be available to all. The Foundation was created in 2010 to further the company's collective mission and values and to give back to the communities that they serve. HAPS was one of the nonprofit organizations chosen by The Griswold Cares Foundation to receive funding to build, strengthen and sustain programs that enhance the quality of life for seniors and adults with disabilities who choose to age in place, including those with limited financial means. Brenda Gross, Madison Garrison and Jim Vonderhaar of the Griswold Home Care Houston area offices present HAPS executive director Anne Thobae with a certificate in recognition of its shared mission. The involvement of area businesses contributing to an improved quality of life in our community is invaluable to us all. We applaud Griswold Home Care and the company’s Foundation for this partnership and its outstanding support of HAPS efforts. Several months ago, HAPS announced that the 2016 Annual Educational Symposium would be held on Saturday, May 21, 2016. However, HAPS will take a break from presenting this educational program this year and will focus on other educational programs during the summer and fall months. The HAPS Annual Educational Symposium will return in the spring of 2017 as we recognize the 200th year since Parkinson's was first described. Thank You! Many thanks to HAPS Medical Advisory Board member Mya Schiess, MD, Assistant Professor of Neurology, University of Texas Movement Disorders & Neurodegenerative Disease Program who led the February 13 th presentation of the Newly Diagnosed Education Program. We appreciate your time and expertise. MARCH 2016 HAPS HAPPENINGS | 3 Superheroes do it again... This year’s Chevron Houston Marathon HAPS Superhero Squad raised an impressive $111,200 and increased Parkinson’s awareness with a massive group of nearly 300 runners and walkers participating in race weekend. We thank our fearless leaders Gary Brentlinger and Leon Keeble who assembled an amazing group of heroes who joined forces to make this a successful and fun event. HAPS would also like to thank all of the walkers, runners, fundraisers, volunteers, spectators and the nearly 800 donors (listed below) who participated in the Marathon and helped make this a “super” year! Liza Abad John Adams Robert Adams Bill Alvarez Laura & Luis Alvira Lynn Amato Terry Amos Chantel Ancell Linda Anderson Kay Andrews Apache Corporation Joseph Aquino Patty & Greg Aquinto Alec Arro Kate Atakturk Deb & Tom Atchison Nancy & Dennis Atchison Steve Atchison Tim Austin Patricia & Juergen Bahr Spruce Bair Jennifer Ballard Melodie H. Ballman Susie Bardwell Kim & Wayne Barnard Tottsye Barnes Bill Barney Ed Barrett Richard Bartsch Jane & Rusty Beard Ivy Beasley Iris & Doug Beatty Donald Beckmann Benevity Community Impact Fund Ron Bernell Marsha & Irl Bernstein Ginger & Byron Bertrand Dave Beun Steve Bingham, Jr. Steve Bingham Sr. Kimberly K. Birtcher Betty Black Liz & Michael Black Charles Blackwell Peggy & Thom Blake BNSF Railway Foundation Lydia Bobo Robert M. Boger Mark Boles Treva & Gary Bonner Camille & John Boon Kevin Bowie Peggy Bowie Jonathan Bowman Wendy Bowman Danny Boze Jane & Bob Bradley Cherry & Audrey Bramel Caroline Brazzel Karen & William Brehm Bobbie Brentlinger Gary Brentlinger Chris Brewster Bette & Ronald Brieger Tricia Brinks Darin Brooks Bernita Brown Don Brown Meredith Brown Nicholas Brown Nina Brown Michael Brown Michelle & True Brown Sherry & Rick Brown Susan & Mike Brown Eunice Bryant Cindy & Thomas Buasch Cecilia Buice Christy & John Buice Janis & Kem Buice Daniel Bullard Steve Burkett Marlene Burkhardt Ellen Buxton-Hall Kelly & Billy Buzzett Melody Byers-Predikant Collin Cagle Joanna & John Calabro Monica Calderon Alice & Aubrey Calvin Kim & Keith Campbell Dale Cannon I. & J. Cantu Claudia Carboni-Mues Jerrie Cargil Barbara & Jerry Carlisle Janet Carpenter Randi Carrabba Patty Carter The Cartwrights Jaime Casasus-Bribian Cheryl Casey Suggie Casey Jacqueline Cate Peggy Cawley Linda Chaddick Mary & Andrew Chan LaVerne Chang Elizabeth Chapman Frank, Nina & Justin Chapman Christie Chase Chevron Matching Gifts Diane Chisam Theresa Chrisman Cory Clechenko Debbie & Brent Clifton David Cloud John Cochran Marcia Cole Chris Coleman Fred Collins James Collins Susan Collins ConocoPhillips Company Cathy & Bob Cooper Clare & Chloe Cooper Michael Cosgrove Jolenta Court Debbie & Kelly Courter Gregory Cox Laura Cox Nancy Cozad Travis Crabtree Peggy Crawley Laurie Crissman Kathleen Crist 4 | HOUSTON AREA PARKINSON SOCIETY Suzanne & Barry Crist Janice & Steven Crocker Rikki Croft Robert J. 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Jr. Andrew Fisher Melanie Fite Jody Folloder Justin Folloder Brian Folloder Lynn & Jim Ford Lori Foster Robin Fountain Cece Fowler Elizabeth & David France Deborah Francis Sabra & Paul Francis Philip Francis Natasie & Adam Frank Pamela & Curtis Frasier Nicole Frazier Bonnie & Tracy Frenkel Friedman Grossman Family Foundation Michael Fry Terry G. 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Judy Sullivan Sallieann & Ronnie Swanner Ahmad Sweeney Tess Sykes Mia Sylve Special Thanks to Regina Symons Nicole Talbot our In-kind Donors Walker Taylor Sheryl Teasley and Sponsors Steve Tefteller Howard Tenney Teradata Matching Gifts Judy Thigpen Lucy Thorp Jim Thorp Tim Thurmond Patricia Timpanaro Sara Tiner Carol Tool Kris Torberson Rosemary Tran Gary Trappe Corbin Tubbs Jackie & Jack Tucker Sandy Turner Adrinne & Gerald Turner Jaclyn Underwood Sandra Uribe Sharon Urquhart Misty Usher Richard Valbuena Lori Valencic Josephine Valenti Janice J. Van Dyke Mary Vandenbrook Mary K. Vanderslice Amanda Vasquez Imelda Vasquez Sherry Verret Carlene & Stan Victor DeAnna Villalobos Marisa Villarreal Krista Villarreal Barbara Virany MARCH 2016 HAPS HAPPENINGS | 5 Potential New Drug Shows Promise for Neuroprotection In tests on a mouse model of Parkinson’s disease (PD), an experimental drug in the early stages of development prevented damage to dopamine neurons by protecting them from inflammation. The results appear in the December 16 edition of the Journal of Neuroscience. The immune system normally defends a person’s body from infection and injury. But sometimes it unnecessarily goes on high alert, which leads to inflammation. In PD, inflammation may speed up the death of dopamine neurons in the brain — the cells that help control the body’s movements. Specifically, inflammation happens when immune cells in the brain (microglia) become activated, and other immune cells (T cells) attack dopamine neurons. To try to treat inflammation in PD, researchers at the University of Nebraska Medical Center in Omaha, NE, took advantage of a naturally occurring antiinflammatory molecule called vasoactive intestinal peptide (VIP). They knew that VIP could not be used as a PD therapy because it activates both good and bad inflammatory responses and because it leaves the body too quickly to be therapeutic. So they created molecules similar to VIP but with improvements, and tested them in mice with PD-like brain changes and symptoms. Results Of the molecules tested, one (LBT-3627) protected up to 80 percent of dopamine neurons in the brains of mice with PD-like brain changes. It also lasted much longer than VIP in the body before being broken down. The drug LBT-3627 also decreased inflammation caused by immune cells. The same molecule LBT-3627 seemed to work by targeting a receptor on T cells known as VPAC2, and by binding to this receptor, it changed the behavior of the T cells from inflammatory to protective. What Does It Mean? Therapies that provide neuroprotection — the ability to slow or stop the loss of dopamine neurons in the brain, which underlies PD are urgently needed. Recently, the role of inflammation in PD has drawn interest in the scientific community. If indeed there is an “exaggerated response” of the immune system in PD (meaning it overreacts), then therapies which modify the response may help slow down PD. The results of this early-stage study with laboratory mice suggest that LBT-3627, being developed by Longevity Biotech, Inc., may hold promise for providing neuroprotection by fighting inflammation in the brain. Continued on page 7 HAPS is currently enrolling individuals for the upcoming Parkinson’s Enrichment Program (PEP) session which begins in April! This fun, five-week enrichment program is offered quarterly to individuals with mild to moderate Parkinson’s disease. The four-hour program is presented at Memorial Drive Lutheran Church each Friday for five consecutive weeks and has components of exercise; recreation; socialization; education; peer-led discussion; professionally facilitated support; and lunchtime conversations. Previous sessions have included virtual travel, art, dance, photography and educational lectures. Space is limited; registration is required. Contact Celeste Harris, LMSW at 713-313-1706 or [email protected] to register or for information about the 2016 PEP schedule. 6 | HOUSTON AREA PARKINSON SOCIETY We are extremely grateful to the following individuals for their generous support of HAPS. Without the continued support of our donors, none of our programs or services would be possible. IN MEMORY Patty Amsler Cruikshank Robert J. Cruikshank Dr. Lewis Florence Rebecca Rayburn Tom Garth Jane Garth George Rogers Gideon Mari and Harry Okabayashi Generia Jacobs Judy and Jerry Sullivan Irv Kauffman Joan and Ron Suchart William “Billy” Hancock Doug Dalton Elizabeth Tennant Janet and William Stanberry “Ducky” Baber Mary and David Haglund David Underwood Nan Knapp Patricia Geddy Bette and Phil Leonard Ann and Tom Kelsey Larry G. Stone Jerry Ann Woodfin J.R. Kerr Cheryl and Marvin Deuell Leon Simank G.J. House IN HONOR Margaret Romeo Michael Romeo Mike Hendrxy for his leadership of the organization Suzanne Morris Lillian De La Cruz R.C. De La Cruz, Jr. Raybourne Thompson, Jr. Gail and Mike Hendryx Janet Unger Molly C. Bailey Lynne and John Williams Marsha and Sam Dodson Ella and Ronald Lassiter Patricia and Pete Peters The GRITs Susan and Bill Martin Bobby Cochran Michael Visosky William D. Ray, Sr. and Family Carlene and Stan Victor Kathy Blankenhorn Richard Kummins GIFTS 90th Birthday of Sylvia Solomon Joan and Ron Schuart Karen Cardiello Dawn McCarthy Her Children Betti Saunders Jerry Brown Joanna and John Calabro Esther Crosby Hu-Yu Lin Sudha and Nitai Saha Jonathan Shear Anna Dell and Bruce Williamson Paul Yang Nina Brown Rochelle Goldberg Skibell Marilyn Albert Joan and Ron Schuart While we make every effort to be accurate and thorough, it is possible to accidently omit or misspell a name. Please contact the HAPS office with corrections. However, questions remain. The role of the immune system in PD is not very well understood. The role of VIP, the molecule the novel drug imitates, is also not completely known. Whether this molecule LBT3627 would be helpful in treating people with PD is unknown. For instance, will it be able to cross the blood brain barrier and allow for delivery as an injection or will surgery need to be performed to allow direct delivery to the brain? If further laboratory studies achieve similarly successful results and are able to answer other questions, a phase 1 clinical trial—a test for safety in a small number of study participants—could launch as soon as 2017. Reference: Olson KE, Kosloski-Bilek LM, Anderson KM, Diggs BJ, Clark BE, Gledhill Jr. JM, Shandler SJ, Mosley RL, Gendelman HE. (2015). Selective VIP Receptor Agonists Facilitate Immune Transformation for Dopaminergic Neuroprotection in MPTP-Intoxicated Mice. J Neuroscience 35(50): 16463-16478. This article was originally published as part of "Parkinson's Science News: What Does it Mean?" on the Parkinson’s Disease Foundation (PDF) website on February 1, 2016. It is reprinted, in its entirety, with permission from PDF. For other science news, please visit www.pdf.org/science_news. MARCH 2016 HAPS HAPPENINGS | 7 Board of Directors Board of Advisors Randi Carrabba - President Mike Hendryx - Chair Chris Brewster - Vice President/Treasurer Jo Furr - Vice President/Secretary Chris Bell Ron Bernell Nina P. Brown Aubrey Calvin Joiner Cartwright, Jr., PhD Bob Casey, Jr. Rich Clifford Robert Cruikshank Meredith Cullen Joe Ahmad Denise Bishop Joan Cupic Frank Donnelly, Jr. William Finnorn Philip Francis Tom Ganucheau Joyce Gilbreath Daphne Haskin Joshua Huss Leon Keeble Todd Kissner Dawn McCarthy Jim Nicklos Jose M. Oti Mimi Prioleau Gerald Rideaux Erick Sandlin Terry K. Satterwhite, MD Jim Thorp Leslye Weaver Greg Groogan Ellin Grossman, EdD Harriet Hart Kamden Kanaly Rob Kerr Liz Lary Harriet Latimer Dan Lauck Anne Martin Robert A. Martone Marti McWhirter Quin McWhirter W.O. Neuhuas III Malcolm Pettigrew George Puig Jeff Rosenberg Arthur Schechter Joyce Proler Schechter Gabriel Zamora Medical Advisory Board Richard K. Simpson, Jr., MD, PhD - Chair Madhureeta Achari, MD Leanne Burnett, MD Steve Croft, MD Albert Fenoy, MD Erin Furr-Stimming, MD Robert G. Grossman, MD Cindy Ivanhoe, MD Joseph Jankovic, MD Joohi Jimenez-Shahed, MD Eugene C. Lai, MD, PhD Laura Marsh, MD Greg McLauchlin, MD Kimberly Monday, MD William Ondo, MD Terry K. Satterwhite, MD Mya Schiess, MD Desiree B. Thomas, MD Gage Van Horn III, MD Ashwin Viswanathan, MD Michele York, PhD Staff Anne Thobae - Executive Director Kathleen Crist, LMSW - Director of Social Services & Program Development Celeste Harris, LMSW - Social Worker & Special Programs Coordinator Angelica Rodriguez - Coordinator of Therapeutic Programs This publication is not intended to provide diagnosis or treatment. Always seek the advice of your physician or pharmacist with questions regarding medical conditions or drug interactions. To request permission to reprint content published in this newsletter, please contact the HAPS office at 713-626-7114 or [email protected].
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