Summer 2022 • Vol 42 • Issue 3
DR. MARK HALLETT ANNOUNCES RETIREMENT Dr. Mark Hallett has announced that he is retiring as the chair of the BEBRF Medical Advisory Board (MAB) – a position he has held for over 30 years. During that time, many strides have been made in advancing scientific and medical knowledge toward Mark Hallett, MD finding the cause, treatment, and cure for blepharospasm and its related disorders. We thank him for his valuable leadership during this time. When asked what he thought the highlights of chairing the MAB were, he said, “in the beginning, knowing and working with Mattie Lou [Koster] and then Mary Lou [Thompson].” He added, “of course, working with the bright persons on the MAB, learning from each other, is always stimulating.” The international workshops (in 1996, 2002, and 2008) sponsored by BEBRF are also a highlight. Each of those workshops produced published documents that advanced the research. Dr. Hallett is a neurologist based in Bethesda, MD, working at the National Institutes of Health (NIH) as Chief of the Human Motor Control Section of the National Institute of Neurological Disorders and Stroke (NINDS). He obtained his A.B. and M.D. at Harvard University, had his internship in Medicine at the Peter Bent Brigham Hospital and his neurology training at Massachusetts General Hospital. He had fellowships in neurophysiology at the NIH and the Department of Neurology, Institute of Psychiatry in London. Before coming to the NIH in 1984, he was the Chief of Clinical Neurophysiology Laboratory at the Brigham and Women’s Hospital in Boston and progressed to Associate Professor of Neurology at Harvard Medical School.
“You only grow by coming to the end of something and by beginning something else.” ― John Irving, The World According to Garp
Dr. Hallett is now Past-President of the International Federation of Clinical Neurophysiology. He has also been President of the International Parkinson and Movement Disorder Society and Vice-President of the American Academy of Neurology. He served as Editor in Chief of Clinical Neurophysiology. Among the many awards Dr. Hallett has received, he became an Honorary Member of the American Neurological Association in 2012, and he won the Lifetime Achievement Award of the American Association of Neuromuscular and Electrodiagnostic Medicine in 2014. In 2017, he received the degree of Doctor of Medicine Honoris Causa from the University of Hamburg, and in 2018, he was made an Honorary Member of the European Academy of Neurology. His research activities have focused on the physiology of human voluntary movement and its pathophysiology in disordered voluntary movement and involuntary movement. It is evident that the BEBRF MAB has been in very good hands for the past 32 years. The MAB will continue to be in good hands into the future. As of Brian Berman, MD August 1, 2022 the chair of the MAB passed to Dr. Brian Berman who is a Professor of Neurology and Director of the Parkinson and Movement CONTINUED ON PAGE 4
The Benign Essential Blepharospasm Research Foundation (BEBRF) is a nonprofit, 501 (c) (3) organization founded in 1981 by Mattie Lou Koster, a blepharospasm patient. Blepharospasm (BEB) means eyelid spasm. The eyelids unpredictably and involuntarily clamp shut in both eyes, leaving the victim functionally blind until the spasm ceases in a few seconds or a few minutes. Cranial dystonia (Meige) is a similar condition in which involuntary muscle spasms in the lower face and jaw cause grimacing and jaw movements. Blepharospasm and cranial dystonia (Meige) are classified as movement disorders and are described as focal dystonias. Hemifacial spasm generally begins as an involuntary contraction around one eye that gradually progresses down one side of the face to the cheek, mouth, and neck. It is not a form of dystonia. BEBRF is a member of the National Organization For Rare Disorders (NORD), American Brain Coalition,Dystonia Advocacy Network, Dystonia Coalition ORDR, and The Harvard Brain Tissue Resource Center (Laurie Ozelius, PhD is the BEBRF Representative). Benign Essential Blepharospasm Research Foundation 755 S. 11th St, Ste 211 Beaumont TX, 77701 P.O. Box 12468 Beaumont, Texas 77726-2468 Phone: 409-832-0788 Fax: 409-832-0890 E-mail: bebrf@blepharospasm.org Web site: www.blepharospasm.org Contributions may be sent to: BEBRF P.O. Box 12468 Beaumont, Texas 77726-2468 The Editorial Staff reserves the right to edit any and all articles. It is our editorial policy to report on developments regarding blepharospasm, cranial dystonia and hemifacial spasm, but we do not endorse any of the drugs or treatments in the Newsletter. We urge you to consult with your own physician about the procedures mentioned. The Blepharospasm Newsletter is published quarterly and mailed to patients, families, doctors, friends of the Foundation, and health care providers around the world.
Newsletter suggested donation $20.00 USD
NEWSLETTER DEADLINE DATES ISSUE
Fall
COPY DUE DATE
October 1, 2022
FROM THE
EXECUTIVE DIRECTOR
The 2022 BEBRF Symposium is set for Oct. 21 & 22 at the Hilton Phoenix Airport Hotel in Phoenix, AZ, with Dr. Padma Mahant as program director. See more information about things to do in Phoenix on page 5. We hope to see you there! Support Group Meetings are still available through Zoom. Check the BEBRF Website or Facebook page for the upcoming ones. We hope to return to in-person support group meetings in the future. Zoom meetings will also continue into the future. Cranial Dystonia Doctors: BEBRF maintains a good database of doctors who treat blepharospasm, and we are seeking to enhance it with doctors who also treat cranial dystonia (also known as Meige Syndrome or oromandibular dystonia). If you have cranial dystonia and are receiving CONTINUED ON NEXT PAGE
PROTECTING PATIENT INFORMATION: The Benign Essential Blepharospasm Research Foundation respects the privacy of patients. Patient information is not shared outside the BEBRF organization.
TABLE OF CONTENTS Dr. Mark Hallett Announces Retirement . . . . . . . . . . . . . . . . . 1 From The Executive Director. . . . . . . . . . . . . . . . . . . . . . . . . . 2 Botulinum Toxin Insurance Authorizations . . . . . . . . . . . . . . 3 Education, Support, and Fun in Phoenix . . . . . . . . . . . . . . . . 5 Tips for Becoming More Self-Empowered When Living With a Chronic Health Condition. . . . . . . . . . . . . . . . . . . . . . . 6 Celebrating Our Donors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Patient Story - Debbie Krause . . . . . . . . . . . . . . . . . . . . . . . . 10 A New Way to Raise Awareness. . . . . . . . . . . . . . . . . . . . . . . 11 Ask the Doctor. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 Research Participation Opportunity . . . . . . . . . . . . . . . . . . . 12 Support Group Meetings & Photos. . . . . . . . . . . . . . . . . . . . 13 We Get It. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 2
The opinions expressed in the articles in this newsletter are those of the authors and do not necessarily reflect the views of the BEBRF, publisher of the BEBRF newsletter.
good medical treatment, please email or call me at the address/phone number above so we can add the doctor to our reference database. Upcoming Webinar: Many blepharospasm patients call the BEBRF office for advice in dealing with their blepharospasm and its treatment. Angel and I have put together a program called How to Get the Most Out of Your Injections. We will be presenting this Webinar via Zoom on Friday, August 26, 2022 at 1:00 central time. Register for the Webinar through the BEBRF website or Facebook page. BEBRF will attend the American Academy of Optometry in San Diego, CA, October 26-29, 2022. The BEBRF presence is part of the on-going effort to familiarize relevant health-care providers with blepharospasm and its related disorders so that patients can get earlier diagnoses and earlier treatment. Reminder: all of the past BEBRF Webinars are available online at the BEBRF Website under the Events tab, and all the Symposium presentations all the way back to 2013 are also available under the About Blepharospasm tab. BEBRF would once again like to thank Office Manager Angel Roberts for designing our new Website, and offer her our congratulations on her upcoming nuptials and move to Missouri. We will miss her.
BEBRF BOARD OF DIRECTORS
Heidi Coggeshall, President/Treasurer* Tishana Cundiff, Vice PresidentEducation & Support* Peter Bakalor, Vice PresidentDevelopment* Jane Boyd, MD, Vice PresidentPhysician Outreach* Charlene Hudgins, Executive Director/Secretary Cynthia Clark* Robert Campbell, PhD* Jonathan Healy Carlas Powell* Bryan Renehan*
EX OFFICIO
Brian Berman, MD, Advisor *Patients
MEDICAL ADVISORY BOARD
BOTULINUM TOXIN INSURANCE AUTHORIZATIONS Are you or your doctor’s office finding it difficult to get authorization for your botulinum toxin injections? If so, you are not alone. BEBRF has been working with patients and doctor’s offices around the country to help facilitate botulinum toxin authorizations and approvals from insurance companies and Medicare. Often the problem is solved by using the correct ‘coding’ in the paperwork filed with the insurance company. If you encounter these problems, please call Charlene Hudgins, BEBRF Executive Director, at 409-832-0788, and she will coordinate with the pharmaceutical company patient assistance team to help your doctor expedite your authorization with your insurance issues. Or if you prefer, you can contact her at charlene@blepharospasm.org. As a reminder, BEBRF has also put together a packet of information that your doctor can use to appeal to your insurance company for more frequent botulinum toxin injections if you need them. Don’t let these authorizations come between you and your treatments! BEBRF is here to help you. 3
Brian Berman, MD, Chair, Richmond, VA Mark Hallett, MD, Bethesda, MD Andrew Harrison, MD, Minneapolis, MN Joseph Jankovic, MD, Houston, TX Hyder A. “Buz” Jinnah, MD, PhD, Atlanta, GA Laurie Ozelius, PhD, Boston, MA Sarah Pirio Richardson, MD, Albuquerque, NM Charles Soparkar, MD, PhD, Houston, TX Mark Stacy, MD, Greenville, NC Julie Woodward, MD, Durham, NC
DISTRICT DIRECTORS & EMAIL
Bryan Renehan, Eastern C T, DE, DC, FL, GA, MA, MD, ME, NH, NJ, NY, NC, PA, PR, RI, SC, VT, VA, WV dir-e@blepharospasm.org Tishana Cundiff, Central AL, AR, IL, IN, IA, KS, KY, LA, MI, MN, MS, MO, ND, OH, SD, TN, TX, WI dir-c@blepharospasm.org Cynthia Clark, Western AK, AZ, CA, CO, HI, ID, MT, NE, NV, NM, OK, OR, UT, WA, WY dir-w@blepharospasm.org
CONTINUED FROM PAGE 1
DR. HALLETT ANNOUNCES RETIREMENT
2016 BEBRF Denver Symposium Faculty with Dr. Berman on the left and Dr. Hallett 3rd from left
Disorders Center at Virginia Commonwealth University (VCU), Richmond, VA. Dr. Berman earned a bachelor’s degree in physics from the University of New Mexico followed by a master’s degree in medical physics from the University of Colorado. He went on to receive his medical education at the University of Colorado and completed neurology residency training at the University of California at San Francisco. After residency, he completed a post-doctoral clinical research fellowship with Dr. Hallett at the Human Motor Control Section of the NIH. He has received numerous scholarship awards during his academic career, and he is an active member in professional organizations including the Movement Disorder Society and American Academy of Neurology. Prior to coming to VCU, Dr. Berman was on faculty at the University of Colorado Anschutz Medical Campus for a decade and served as the Associate Director of Research at their Movement Disorders Center. He joined the BEBRF MAB in 2014 and served as the Program Director of the 2016 BEBRF Symposium in Denver. He has given dozens of extramural lectures, presentations, and visiting professorships on the local, national, and international stage. In addition, he has mentored 4
hundreds of students and trainees over the years, many of whom have gone on to their own neurological and/or movement disorder careers. Dr. Berman’s research interests include using advanced brain imaging methods and non-invasive neurostimulation strategies to study the changes to brain structure and function caused by dystonia and Parkinson’s disease. By elucidating neuroimaging biomarkers, he hopes to equip future physicians with tools to make better and earlier diagnoses. He has received numerous research grants as a Principal Investigator, Co-Investigator, and Site Investigator from a variety of sources including the BEBRF, Dystonia Medical Research Foundation, the NIH, and Dystonia Coalition, and has authored or co-authored over 80 peer-reviewed articles and scientific abstracts. BEBRF would like to thank Dr. Hallett for all of his years of dedicated service that has surely set the course for much of the world’s research done on blepharospasm and its related disorders. BEBRF also looks forward to and welcomes Dr. Berman as chair of the MAB – research is the key to our treatment and cure.
EDUCATION, SUPPORT, AND FUN IN PHOENIX BEBRF again invites you to its annual Symposium in Phoenix, AZ on October 21, and 22, 2022. As a reminder, on Friday, Oct. 21, BEBRF will host a Meet and Greet which will provide a chance to network and socialize with fellow blepharospasm patients. The Meet and Greet is free to attend, and will have delicious appetizers and a cash bar. The next day is the Symposium, and a chance to hear valuable information on the latest developments on the cause, cure, and treatments of blepharospasm and its related disorders. The Symposium is also free, and BEBRF will provide complimentary breakfast and lunch. The Symposium will be held at the Hilton Phoenix Airport Hotel. If you would like to register for either the Meet and Greet or the Symposium, the registration links are available on the BEBRF website, or you can call the BEBRF office at 409-832-0078. If you would like to reserve a room at the hotel, at the special BEBRF room-rate, call 480-804-6095, and be sure to tell them you are with the BEBRF Symposium. At last year’s Symposium in Philadelphia, BEBRF hosted an after-Symposium event at the Independence Beer Garden. It is hoped that BEBRF can host a similar after-Symposium event in Phoenix Many people who attend the Symposiums plan to arrive a few days ahead of time or stay a few days afterward in order to explore the host city. To that end, the following are a list of some of the fun and interesting activities and attractions that are available in Phoenix: • Several companies offer Hot Air Balloon rides. • There are numerous organized hikes through various trails in and around Phoenix and the Sonoran Deserts and Canyons. • Many enjoy the Dolly Steamboat tours. • Rafting and canoeing excursions are available.
Arizona Cactus and Native Flora Society, which contains more than 50,000 plants on 140 acres as well as numerous Chihully art installations. The DBG is designated a Phoenix Point of Pride. • The McCormick-Stillman Railroad Park is situated on 30 acres and includes a Railroad Museum.
• Several companies provide ATV, UV, and Centipede vehicles to ride onto the trails.
• The Musical Instrument Museum is the largest of its kind in the world with over 15,000 musical instruments of all kinds.
• There are day trips to Tombstone and the Grand Canyon.
• The Heard Museum is “dedicated to the advancement of American Indian art”.
• An interesting place to explore is the Desert Botanical Garden (DBG), founded by the
• The Butterfly Wonderland is the largest butterfly conservatory in America.
5
TIPS FOR BECOMING MORE SELF-EMPOWERED WHEN LIVING WITH A CHRONIC HEALTH CONDITION BY TOM SEAMAN When we are faced with a limiting health issue where performing “simple” everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition or injury, but is especially prevalent with a chronic health issue. It is always there to remind us that we have to work a lot harder to perform tasks that were once so easy. This can get downright exhausting and overwhelming to the point where we might feel much less of a person than we once were. In my case, I live with a painful neurological movement disorder called dystonia. I have had it for over 20 years and it has altered the course of my life in many ways. Given the nature of this disorder where the main symptoms are involuntary body movements and chronic pain, it can feel like an outside force is controlling my body. This is very unsettling, which can lead to a sense of helplessness and a decreased feeling of competence. Those of us living with dystonia (and any other chronic condition) have to work very hard to combat these problems on a daily basis. Below are some ideas to help you feel more empowered. – You are the only one with unique knowledge about your condition and how it affects your life. You are the one who can and should make the major decisions about your life. Only you know how you feel at any given time, what you are capable of, and what your limitations are. Don’t allow feelings of guilt push you into doing something you know your body will pay for, either during or afterwards. – Be careful to not compare yourself to others. No one is better than you. We are all unique and everyone has lived a very different life. We cannot completely duplicate the success of another person because we all take different paths to get where we are. Concentrate on strengthening your own skills 6
and abilities. Be proud of your accomplishments and acknowledge how well you are doing in the face of great challenges. – Prioritize. On your best days you may find you can do more things with relative ease. Other days, a single task might wipe you out for the rest of the day or even several days thereafter. Plan ahead so you can prepare yourself prior to an activity and rest time afterwards if necessary. – Be careful about being a people pleaser. It often means jeopardizing your health for the sake of others, an attribute that may have and may continue to contribute to your symptoms. Do what you can and know your limitations. Others can adapt to you. – Be sure to find doctors you can trust. This is often a difficult task. Dystonia and other conditions are often misunderstood, making it hard to find the right doctor who understands your specific needs, so it might take some shopping around. To assist in this process, educate yourself as much as possible about
Despite the challenges we all face, the biggest and most complex obstacle we will ever have to personally overcome is our own mind. We are not responsible for everything that happens in life, but we are responsible for the selfdefeating thinking patterns undesirable experiences might create.
your condition so you are able to screen your health care team. I wasn’t educated nearly enough in the beginning and I paid the price because some of the doctors I saw didn’t know what they were doing and made me worse. – Don’t forget that your doctor works for you. Don’t let their busy schedule force you out of the office before you feel he or she has met all your needs. Your doctor is there to serve you; not the other way around. Together, you and your doctor can map out the best plan for your care. – Take responsibility for your thoughts, feelings, and choices. We are responsible for how we feel about everything that goes on in our lives; not other people. – Advocate for yourself and for others. Learn as much as you can about your health condition so you can make the best choices for your personal well-being. Share with others what you learn to help them make smart choices. It is also important to be educated so we understand and are comfortable with the different treatments our doctors propose.
Advocate by talking to people about your health condition to raise awareness. – Reach out and lend a helping hand to someone who is struggling, write a blog, articles for various online magazines, get involved with organizations and support groups, and get active on social media. Raising general awareness about your health condition and directly helping others is a big part of personal healing and self-empowerment. – Take personal time for yourself, whether to relax or have fun. Don’t forget how important it is to let go and enjoy life. It is far healthier to focus on all you can do versus all the things you can’t do or choose not to do. Dwelling on problems can make you forget how to have fun. There is joy all around you and there are ways to let go of fear and anxiety, and other problems associated with any health condition. – If you are well enough, take a walk in the park, go to a movie, concert, play, or sporting event. Treat yourself to a massage or other way of pampering yourself. Remove toxic people from your life. Do whatever you can to create peace in your life. You deserve it! – Practice asking for help without guilt. We all need help. Let someone else take care of cleaning the house or shopping. Let friends or family members take care of your kids every now and then so you can get some rest. When you feel well enough, pay the favor forward. Dystonia and most other chronic conditions are survivable. You can still have a quality life regardless of your symptoms. Do whatever it takes to make it work. You can get through the hard times and come out on top. Just keep in mind what’s really important in your life and then go for the fullest life possible.
Don’t change so people will like you. Be yourself and the right people will love the real you. 7
Celebrating BEBRF wants to publicly acknowledge, celebrate, recognize, and thank our 2021 donors. Your generosity is vital to us and our clients and allows us to continue our mission! We plan to acknowledge our donors going forward (by donation category of silver, gold, platinum) and have redesigned our 2022 donor envelopes and website with an additional space for your authorization. Since this is our first year for the acknowledgement, we reached out to all of our donors for permission to list your name (by email if we had that information, or by regular mail if we did not have an email address for you.) If we did not receive your permission, your donation remained anonymous. In addition to the names listed below, BEBRF also received 555 anonymous donations. If you feel your name has been left off in error, please let us know as your donation is important to us! Barbara E Abel Samuel Alvarez Robert Amort Marilyn Amweg Ruth Anderson Jo Ann Arnold Nancy Atkinson Peter Bakalor Kenneth Baker Linda Barnes Pauline M Barnes Shirley Marie Barr James R Baske Sally Baum Kristin Bayer Barbara Beckett Connie Jean Betson Howard Bigelow Jane B Blaho Linda E Bobkoskie Frederick Borcherdt Wendy A Boyd Barbara Bredemeier Frances Bruney 8
Cynthia Buchanan Elizabeth Calcutt Dan Cappio Kenneth Chapnick Helen Rose Chestnut Barbara Chestovich Sandy Chupick Connie Cicio-Banker Margery Clancy Katherine W Clarke Heidi Coggeshall Ginny Dalton Martha Darden Marcia DeFren Pat DeMars Nancy Diebel-Downing Theresa M Doss Florence Duggan-Bayne Liisa Ecola Eugene M Egan Charlotte Eggert Judy Eilken Thomas Fagans Peggy Foster
Lila M Gardener Mary Faith Gardiner-Ferretto Valery Garrett Norman Garrey Marian O Garrity Mario and Linda Giacoio Shelley B Goddard Jennie & Bernie Goldberger Alan Goodman Pamela Goss B Kelly Graves Kathy Gray Terry Evander Grim Gail M Grueneberg Peggy Guichard Charles Guyton Donald Hamm Teresa Hargis Carolyn Harper Donna June Harrison Alan & Joellen Hartley Jon Healy Janice Hitchcock Wilma Hoffman
our Donors Anne Holsclaw John Holt Carol Horton Bruce and Rita Hulme Gaines Hutcheson Carol Imo Alfred Intintoli Jaelline Jaffe PhD David S Johnson Sid S Kere Barlyn B Kerr Cynthia Kester Marilyn Kibilowski Barbara Kimmel Theresa Kinscherf Dr. Marty S Knepper Virgil J. Koski Debbie Krause Kathryn E Krug Myrna Landherr Paula Lardiere Helene Lauffer Roselle Lazarov Mark S Ledoux Mae Lee Cynthia Lewis Dee Linde Sherwin Low Gregory Luzecky David Lyon Peggy MacKinnon Marilyn Marschand Carole Josephine Masa Joanne S Matuzas Angela McClain Lillian McElhinney Virginia McKay Jill McLaren Corina Menendez Sonya Miller
Verda Mills Thomas Mollo Roxinne Montague Carolyn Muchhala Barbara Marie Mullally Suzanne S. Neal Nancie Near Janet Necessary Carol Nelson Paula Nichols Joan Nikelsky Susan Nye Joe O’Neill Bonnie O’Rourke Rebecca Oelbermann Diane Oesterwind Toni Okada Luisa Ontog Rod Palmer Anthony Passarello Alan J Phair Larry Phelps Michel Pilon Kim M Pirger Sheila Pollack Gwen Quick Nita Rausch Michael Rendino Bryan Renehan Anne Reschak Debi Rickard Winston Ricks Angel Roberts Gayle M Robertson Gary Royse Vonnie Rutherford Nona Sansom Robert Schechtman Jacqueline Schiff Jeanette Schlidt
DeeAnn Schnibbe John F Scott Barbara Shaffer Torre Shanks Stephanie Shimada Bonnie Shimmel Frances Shuping C. Miller Sigmon Harlan Smith Dale Sorenson Anna Ruth Stetenpohl Jerry W Stinson Kathryn Stukus Nancy Swanson Carol Jo Taberski Rebecca Teichman Jeannetta Tignor Clara Trevino Joe Trumbly Shirley Vaughn Margaret Veedock Beatrice Vinson-Foster Kenneth Walls Jean L Ward Noriko Watanabe Renate Weber Barbara Wiegel Grady Lee Williams Nancy Williams Nell Williams Viola Williams Mary Wilmarth Richard S Winslow MD Joan C Witte Kathryn S Wray 9
PATIENT STORY - DEBBIE KRAUSE I welcome you to my story just as the BEBRF welcomed me☺. They continue to inform and support me in my newer lifestyle. I am an analytical people person. I’m hoping my journaling is helpful and inclusive. In 2018, my eyes seemed to feel dry and irritated. I was working as a pediatric Respiratory Therapist at University of Wisconsin Hospital in Madison. I started trying saline drops, then preservative free eye drops 4-10 times/day, and eye gel at night. (At times, I used Refresh® eye drops whose main active ingredient is carboxymethylcellulose sodium. Currently, I use Systane® products whose main active ingredient is polyethylene glycol. This became one of my first frustrations with doctors saying just try products to see what works for you. This became a foreshadowing of my understanding that not everything works the same for everyone, and I have a rare condition.) In November 2018, I saw my eye doctor and was started on Restasis®, and oral fish oil. In May 2019, with severe eye blinking, I changed to Xiidra® and had eye (punctal) plugs placed. In August/September of that year, I had bigger punctal plugs placed since the last ones fell out, and I retried Xiidra. Later in September, I took a vacation, not realizing I was never going to return to work (where I had started wearing sunglasses), and I was happy to try scleral lenses on a trial basis in my ophthalmologist’s office for my diagnosis of extreme dry eye. I had stopped driving since I was functionally blind. I walked into the office on my husband’s arm, using his guidance so I wouldn’t walk into walls. And my photophobia was bad. When I didn’t get quick relief from the trial, the doctor said she thought I had blepharospasm and in 3 days I saw an oculofacial doctor on September 23, 2019, and he scheduled me for Botox® one week later. My symptoms were really progressing, and before I saw him next, I started having facial grimacing. I called his office to report changes and to try and get Botox sooner, and even considered going to the ER. I finally got my first Botox to my eyes September 30th, and it greatly improved my spasming. I could see again! Once the doctor saw my grimacing, he told me he thought I had Meige syndrome, and he referred me to a neurologist in Movement Disorders. After many tests to rule out other conditions, and several appointments with my Madison neurologist, 10
she said my condition was progressing quickly. I now was also having more jaw and neck movements where my head wanted to tip down and to the left. I continued Googling on the computer as much as my eyes allowed. My husband, family, and friends were all very concerned and supportive. Getting other specialists involved was like pulling teeth. I found I had to be persistent and be my own advocate, and I found getting beyond the nurses to the doctors can be difficult. In autumn 2019, I had shortness of breath (I’m still wondering if this was/is diaphragm spasming) for which I went to the ER three times. I lost 10 pounds (due to spasming and need for increased calories). Eating became more difficult. I begged and finally saw a speech therapist specializing in swallow problems and an Ear, Nose, and Throat specialist (ENT). Something wasn’t right/diagnosed, but it felt good to talk with an experienced speech person who did my swallow study. She understood how my inabilities linked with my study. Someone heard, confirmed, and empathized with me! An ENT physician’s assistant shared my appointment notes and speech therapy scoped video with the otolaryngologist, who said I had larynx tremor that he treated with Xeomin®. He said my symptoms and physical manifestations were consistent with Meige syndrome. I now had two doctors who said and wrote Meige syndrome in their notes. My neurologist was clinging to a diagnosis of functional movement disorder due to my quick progression. She also said people with anxiety can be prone to this. My quiet husband blurted out she is not an anxious person! (I was the extraverted person that friends often confided with since I was so chill.) I was able to get a referral to the Mayo Clinic in Rochester, MN, and they saw me Jan 2020. January 6, 2020, my Mayo neurologist, said “You have Meige Syndrome hands down”. Notable findings: cranial/cervical dystonia including blepharospasm, oral facial (oromandibular) dystonia, cervical dystonia (with 40 degree antecollis and 30 degree left rotational torticollis). “There is no evidence of a functional neurologic disorder.” An EMG also gave definitive evidence of spasming/contractions. I continue to go to Mayo Rochester which is about 3 hours from Madison WI every three months for Xeomin injections. My eyes have done well in response, which I am extremely grateful for. Eye doc says my eyes are no longer dry (but I continue with Systane eye drops/ goggles at night, as needed drops/warm eye mask during the day). We continue to tweak Xeomin amounts and locations. I still have some head pull to left (and this unpredictability especially keeps me from driving), left trapezius hypertrophy, some head bob, newer left arm movement, lip pursing, uncoordinated/minimal
chewing, some mouth clenching, low energy, and an expiratory breathing phase that isn’t as relaxed as it should be. I develop sore back muscles especially if I allow my head to look down too much. Heat usually takes care of this. We started adding Xeomin to my left pectoral muscle in 1/21, and to my jaw muscles in 10/21. I am currently getting 365 units. I am open to a second opinion somewhere else. Who knows what the future may bring? I stopped my larynx Xeomin injections 2/21 since my otolaryngologist in Madison and I thought these were making my swallow worse. I still have a little strained voice with minimal shortness of breath after injections. I did overall lose 30 pounds and worked with a nutritionist. The theory is that contracting muscles are using lots of calories. I have to consume at least 2300-2500 calories a day to keep my weight at 118 on my small 5’1” frame. I did take two online classes
my insurance offered me: coping skills for chronically ill patients and a mindfulness class. I also found a physical therapist with dystonia experience who has been helpful. My lifestyle is more limited than it used to be, but I know if I pace my activity my body will be happier. I have also found I can do some easy kayaking that doesn’t aggravate my muscles, and keeps my head looking more forward, which is a plus. I continue to follow webinars and zooms with BEBRF, and with DMRF, and a local zoom with Essential Tremor/dystonia. I have and continue to learn so much. I thank you all, especially the zoom people who I feel a connection to. It is so nice to talk with people who understand and empathize. A special thanks to Charlene and all you do for us. BEBRF has really been there for info and support. (Including the info when applying for disability-which I was awarded on my first attempt.)
A NEW WAY TO RAISE AWARENESS BY ANGEL ROBERTS Ever since the launch of the new website, BEBRF has been looking into new ways to raise awareness of blepharospasm as well as expand our reach to those who might not know about the Foundation and all the services we provide. There are many different routes one can take to do that, but we decided to take advantage of the Google Ads Grant offered to non-profits. This endeavor proved to be extremely helpful in our mission to spread awareness to more people searching on the internet for help with their blepharospasm. Google allows nonprofits the ability to use a $10,000/month grant to place ads on their search engine. This means that we did not have to spend any of our donations to promote the Foundation or blepharospasm related content. We signed up and within a few days of getting started on creating ads, we discovered that they also offered a free program for non-profits called Non-Profit Marketing Immersion. This program pairs a non-profit with a group of marketing students who will create marketing campaigns on Google Ads as part of their online marketing class. We were paired with an exceptional group of Italian students in Pisa. They were so interested in learning more about the Foundation and blepharospasm that they soaked up any bit of information that we
provided to them. Their enthusiasm and compassion showed in the ad campaigns they created for us because since May 25th, our ads have been seen by over 54,000 people by the end of July. Out of those 54,000, over 3,200 people actually clicked on the ads – a remarkable increase in website traffic. Much to our surprise, the data showed that quite a few of those (who also viewed our website) were a much younger audience than we would have expected. So, what exactly does that mean in regards to raising awareness? We have witnessed a large uptick in new patients discovering us for the first time, and thankful that they now have an outlet of resources to help them. Many have reached out to find doctors, wanting to gather information to learn more about what they are dealing with, signing up for the newsletter, or even just needing to vent about their struggles with someone who understands them. (As a side note, if you are happy with your doctor, we strongly encourage you to drop us an email or call us so we may recommend them to other new patients in your area). Our mission is all about Education, Support, and Research, and with the help of a group of Italian students and the Google Ads Grant, we are now reaching more people who need just that. 11
ASK THE DOCTOR Disclaimer: Neither the BEBRF nor members of the BEBRF Medical Advisory Board has examined these patients and are not responsible for any treatment. Q: I have BEB and also RLS and Essential Tremors. I have Botox injections of 100 units every 12 weeks. Q. I’ve read about has BEBtold patients who take 1000 tionstohelpful, while others me that taking My neurologist me that sometimes this may lead Parkinson’s. Is thistell true?
mg of taurine twice a day, and they find that
these medications simply make them not care as
A: Restless Legs Syndrome (RLS) is a common sleep related movement disorder in which dopamine, the primary when they take it along with their botulinum much that they havea BEB - or about else brain chemical that is deficient in Parkinson’s disease (PD), is believed to play role. There havemuch been an toxin injections, their results are much imfor that matter. A dose 1,000 (1 gram) increasing number of studies supporting that there is an association between RLSof and PD, mg but the natureof of proved. Othersishave said they take L-tyrosine this association not well understood. Taurine a day along with 200-400 mg normally
and also have improved results. How safe is consumed the diet beas safe over the an early risk factor for PD, it may be that it affectsinthose withshould PD more a consequence itWhile to doRLS thatcould longbeterm? of using dopamine therapies in PD. There is also a growing body of L-Tyrosine evidence supporting that those long run. on the other hand diagnosed can be an A. This an interesting The more pa- characterized with is Essential Tremor question. (ET), a movement disorder by action tremors of the hands, are at an important precursor for dopamine production. tients I meet, more different stories I hear increased riskthe of developing PD. The nature of this link, however, has not been fully worked out. Importantly, Some data suggests that BEB may be at least both RLS ET frequently occur independent about whatand "caused" their blepharospasm andof any other neurological disorder. We need a better related totoaclarify diminished effect of dopamine understanding of the mechanisms underlying partly these disorders their relationship to PD and what helps them. Thepathogenic problem is that there are in the brain. Note that "diminished effect" does know whether an individual who develops is part of a subset of patients who will go on to develop PD. probably many different factors involved in the not necessarily mean simply diminished level. development and severity BEB, and Finally, BEB occurs in someofpatients withone PD, factor but it is not thought to be a risk factor for developing PD. Nevertheless, L-tyrosine at and a dose 500 mg/day may more impact for one to person than an-any relationship Morehave investigations are needed know whether exists between BEB otherofmovement appears to be safe. Both Taurine and L-Tyrosine disorders such as RLS ET. other based upon eachand person's personal chemare often recommended by alternative practitionistry, genetics, environment, toxin - Brian Berman,immediate MD, Virginia Commonwealth University, Richmond, VA exposure, medications, diet, etc. ers to "reduce stress and anxiety." Since both of these supplements appear safe at the doses I am not aware of any of my patients who are mentioned here, I see no harm in trying them. I'm taking either Taurine or L-Tyrosine to improve sure the BEBRF would be interested in someone Would youbut likethe to participate in a be research study? their BEB, following may helpful. Tau- The flyer below invites you for just such a purpose. The keeping a log of dietary supplements that differresearch is being conducted in Richmond, VA. Call the number listed below for more information. rine is believed to have many actions, including ent people find helpful. The role of diet and nutristimulating the gamma-aminobutyric acid alpha tion in many diseases and disorders is becoming (GABAa) receptors. These are the same recepmore and more apparent. tors that the benzodiazepines act upon. ExamAs part of your participation, ples of benzodiazepines are lorazepam (Ativan), youMD, willPhD, be asked Charles Soparkar, Plasticto: Eye Surgery clonazepam (Klonopin), and aprazolam (Xanax). Associates, Houston, TX. Some patients find these anti-anxiety medica• Complete a clinical assessment with a neurologist • Undergo a magnetic resonance imaging (MRI) scan. Blepharospasm: a form of dystonia characterized by • Complete electrical stimulation testing involuntary contractions and spasm of the Each will take about an hour Do muscles you havesurrounding a poem, bitsthe of wisdom, eyelid random acts of kindness you have received, or something funny that happened to you as a result of your blepharospasm? Please submit your poem or story to the BEBRF office by email at You will be compensated up to $75 for your time and participation bebrf@blepharospasm.org using the subject line: “Newsletter Submission”.
RESEARCH PARTICIPATION OPPORTUNITY
YOUR THOUGHTS IN PRINT
INTERESTED? CONTACT THE RESEARCH COORDINATOR AT: 12
17
SUPPORT GROUP MEETINGS To get your support group meeting in the next issue of the newsletter, please notify the Foundation office, before October 1, 2022, the next newsletter deadline. If you are interested in attending an online meeting but are not currently in a location with a support group leader, please contact us, and we will try to find you a meeting.
EASTERN DISTRICT Southwest Virginia Date: Saturday, September 10, 2022 Time: 12:30pm Location: Clarence’s Restaurant Ridgeway, VA Contact Person: Peggy Gilley Phone: 276-956-3555 CENTRAL DISTRICT Little Rock, Arkansas Date: Tuesday, August 16 - 17, 2022 Time: 8am – 5pm Location: Dr. Brook’s office 9800 Baptist Health Dr Little Rock, AR 72205 Contact Person: Ena Wilmot Phone: 817-488-0445 Email: enamwa@hotmail.com Northeast Texas Date: Wednesday, September 21, 2022 Time: 12pm – 2pm Location: Zoom Please contact Linda for invitation instructions to meeting. Contact Person: Linda Trahan Phone: 214-563-7937 Email: linda.trahan@sbcglobal.net Dallas/Fort Worth, Texas Date: Tuesday, October 18, 2022 Time: 12pm – 2pm Location: Zoom Please contact Ena for invitation instructions to meeting. Contact Person: Ena Wilmot Phone: 817-488-0445 Email: enamwa@hotmail.com Central Texas Date: Friday, October 28, 2022 Time: 11am – 12:30pm Location: Zoom Please contact Carlas for invitation instructions to meeting. Contact Person: Carlas Powell
Phone: 409-363-2206 Email: carlas.powell@gmail.com West Dallas/Fort Worth, Texas Date: Wednesday, November 16, 2022 Time: 1pm – 3pm Location: Zoom Please contact Sharon for invitation instructions to meeting. Contact Person: Sharon West Phone: 817-297-4389 Email: swest124@swbell.net WESTERN DISTRICT Greater LA, California Date: Saturday, August 20, 2022 Time: 10 a.m. –11:00 a.m. Location: Euro Cafe 546 E. Baseline Rd Claremont, CA 91711 Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com Greater LA, California Date: Saturday, September 17, 2022 Time: 4pm – 6pm Location: Zoom Please contact Cynthia for invitation instructions to meeting. Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com WESTERN DISTRICT Contact & SGL Date: Thursday, September 22, 2022 Time: 4 p.m. – 5 p.m. PDT Location: Zoom Please contact Cynthia for invitation instructions prior to meeting Contact Person: Cynthia Clark Phone: 650-678-4132 Email: clark.cyl@gmail.com CONTINUED ON NEXT PAGE 13
NATIONAL SUPPORT National Support Group Meeting Date: Friday, August 19, 2022 Time: 1pm – 3pm (CENTRAL TIME) Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: charlene@blepharospasm.org All UK Support Group Meeting Date: Tuesday, September 6, 2022 Time: 1pm – 3pm (CENTRAL TIME) Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: charlene@blepharospasm.org National Support Group Meeting Date: Thursday, September 15, 2022 Time: 1pm – 3pm (CENTRAL TIME) Location: Zoom
Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: charlene@blepharospasm.org National Support Group Meeting Date: Friday, October 14, 2022 Time: 1pm – 3pm (CENTRAL TIME) Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: charlene@blepharospasm.org National Support Group Meeting Date: Friday, November 18, 2022 Time: 1pm – 3pm (CENTRAL TIME) Location: Zoom Please contact Charlene for invitation instructions to meeting. Contact Person: Charlene Hudgins Phone: 409-832-0788 Email: charlene@blepharospasm.org
IF YOU ARE INTERESTED IN LEARNING MORE ABOUT STARTING A SUPPORT GROUP, CONTACT THE BEBRF OFFICE AT 4098320788.
07/18/22 NATIONAL SUPPORT GROUP MEETI
14
NG
P ME 04/14/22 NATIONAL SUPPORT GROU
05/20/22 NATIONAL SUPPOR
ETING
T GROUP MEETING
WEST DALLAS/FORT WORTH
SUPPORT GROUP MEETING
PLEASE REMEMBER BEBRF IN YOUR WILL 15
It is our editorial policy to report on developments regarding BEB/Meige and related disorders, but we do not endorse any of the drugs or Ittreatments is our editorial to report developments regarding BEB/Meige and related but domentioned. not endorse any of the drugs or treatin thepolicy Newsletter. Weon urge you to consult with your own physician about disorders the procedures ments in the Newsletter. We urge you to consult with your own physician about the procedures mentioned.
bENIGN ESSENTIAL bLEPHAROSPASM RESEARCH FOuNDATION, INC. P.O. BOX 12468 BEAUMONT, TEXAS 77726-2468 409-832-0788 l Enclosed
Dated Materia
We get it, we really do… Times are hard, what with the price of gas and groceries. It’s hard on everyone. BEBRF exists only on the funds of donations. If you’ve already made a donation, thank you so much. If you haven’t, please consider making a donation. BEBRF can set you up on a recurring donation basis. We have patients on fixed-incomes who donate as little as $5 a month. That may not sound like a lot, but a $5 monthly donation equals a $60 annual donation! And if this is not the best time to donate, we understand and hope you remember us in the future.
Non Profit Org. U.S. Postage PAID Beaumont, Texas Permit #299