MDS-1012-414 VOLUME 17, ISSUE 1 • 2013 • EDITORS, DR. CARLO COLOSIMO, DR. MARK STACY Parkinson’s Disease in Sub-Saharan Africa — Richard Walker, MD, Chair, MDS Task Force on Africa, North Shields, United Kingdom With the demographic transition, more people in sub-Saharan Africa Nurse Specialist Course in Tanzania (SSA) are surviving to old age and there has been a dramatic increase Previous movement disorder courses have been held in South Africa in the contribution of non-communicable disease (NCD) to both and Mali, supported by MDS. In December 2012, a PD nurse mortality and morbidity. Neurodegenerative conditions, such as specialist (PDNS) course (see p. 12) was held for east Africa in Moshi, Parkinson’s disease (PD), are becoming more common but knowledge northern Tanzania. This was jointly funded by MDS and the World about such conditions in this area is very limited (Okubadejo et al Federation of Neurology (WFN) and included over 20 participants 2006). from east Africa including Ethiopia (2), It had been thought that PD was rare in Rwanda (3), Uganda (1), Kenya (4) and SSA; but recent research from Tanzania Tanzania. The Tanzanian attendees also has demonstrated higher rates of age- included occupational therapists (OTs) and adjusted prevalence than previously de- physiotherapists (PTs) and two nurses from scribed, though not has high as in western Nigeria. The one week course was very suc- countries (Dotchin et al 2008). Most of cessful and all of those who attended the the individuals identified in this house-to- course have been given a PDNS mentor house prevalence study had not been from the UK who will maintain email diagnosed and were not even aware of PD contact and be available for any questions. as a medical condition. Lack of diagnosis, Individuals selected to attend the course and therefore treatment, is likely to have were mainly from neurology departments led to earlier mortality which is likely to be whereby they would be assured of looking the main reason for the lower prevalence after PD patients on their return. They will rates. However, it was demonstrated that also write a report about the numbers of individuals with no knowledge of PD patients, and their treatment, after six could be identified from a survey includ- months. (Please read more about this ing six questions (in fact 2 would have course on p. 12.) Based on the success of identified most). This cohort has subsequently been successfully the east African course the Task Force is planning to run a course for treated with physiotherapy cueing techniques (Rochester et al 2010) Anglophone west Africa in Accra, Ghana in September 2013 and and then with levodopa (Dotchin et al 2011), and in some individu- plans to run further regional courses in Francophone west Africa, als this has been “life changing”. central Africa and southern Africa in the future. We estimate from our figures that, taking into account other low and There is a great lack of trained neurologists in many countries in SSA middle income countries, up to half the people in the world with PD (Bower et al 2005). At the same time as the PDNS course in Accra, are not diagnosed, and therefore not treated. There is a great lack of there will also be a three-day course for non-specialist doctors, awareness about PD among the public, and also among healthcare mainly from Ghana, but also from other Anglophone west African professionals and a lot of the features are felt to be “due to old age” countries. Again, if this course is successful the Task Force plans to (Mshana et al 2011). Even if people are diagnosed there is still a run it in other African regions. major issue about the availability, affordability and sustainability of To back up education for health professionals and also patients and drug treatment. carers, we will be modifying information about PD to make it appro- The SSA interest group of the MDS was established in January priate for people in SSA. Parkinson’s UK have agreed for any of their 2009, and in June 2012 the Task Force on Africa was created. Our supporting information to be used as necessary. Initially, the informa- main aims are to increase awareness, and training, in relation to PD tion will be produced in English but will subsequently be translated in Africa, and promote the availability of affordable, and sustainable, into local languages, eg Swahili, as necessary. MDS is also supporting drug treatment. this provision of information which we hope will have a major impact with the increasing availability of reliable Internet throughout Africa. CONTINUED ON PAGE 23 www.movementdisorders.org E DITORIAL inside this issue Welcome to the Spring 2013 edition of Moving Along. We are delighted to share the progress and information of the MDS in year 14 of this publication, and our fifth year as co-editors. During these last years, the Society leadership has placed high priority and much effort in Cover Story 1 establishing a truly global network for research, education and academic interaction. A brief Parkinson’s Disease in glance at the issue finds reports from Argentina, Australia, Cameroon, Chile, Estonia, Italy, Sub-Saharan Africa Myanmar, the Netherlands, Nicaragua, Sweden, Tanzania, and Thailand. Editor’s Section 2 In our cover story, Dr. Richard Walker describes the increasing recognition of Parkinson’s Carlo Colosimo, MD and Carlo Colosimo, MD Mark Stacy, MD disease in Sub-Saharan Africa, and the education programs that target Nurse Specialists to improve recognition and treatment of this disorder. Below this column you will find infor- President’s Letter 3 mation and, hopefully encouragement, to submit an article for publication to Moving Along. Günther Deuschl, MD, President Professor Günther Deuschl, reviews the many successes and a task force yet to be organized in his review of a most energetic term as the President of MDS. We have all benefited from International Congress 4 his vision, encouragement and enthusiasm. As editors of this newsletter, we are pleased to In Memoriam 5-6 thank him personally for his leadership, kindness and support during the last two years. We William Weiner, MD also provide messages from MDS regional society chairs: Dr. Werner Poewe, European Mark Stacy, MD My Generation 7 Section; Prof. Ruey-Meei (Robin) Wu, Asia and Oceanian Section; and Dr. Jorge Juncos, Alfonso Fasano, MD, PhD Pan American Section. Society Announcements 8-9 On page four Dr. Stewart Factor, a former fellow and long-time friend, and Dr. Steven Reich, a faculty col- league, remember the life of Dr. William J. Wiener, who passed away late last year. We thank them for captur- European Section 10-15 ing the essence and importance of this giant to our society. We wish to add our condolences to his wife, Dr. Werner Poewe, MD, MDS-ES Chair Lisa Schulman, and that we all wish her strength and hope during her difficult moments. Asian and Oceanian 16-18 My Generation features Dr. Alfonso Fasano, most recently relocated to the University of Toronto, and his Section mentor, Professor Günther Deuschl, where we learn, among many things, that our protagonists, do not thrive Ruey-Meei Wu, MD, PhD in conditions higher than 30°C. This may be an important point for potential competitors to remember, if MDS-AOS Chair they are ever paired in the annual Video Games at the International Congress. Dr. Fasano’s description of a Pan-American Section 19-22 “secret society” bodes well for the future of our organization, particularly as he bicycles to new friends and Jorge Juncos, MD colleagues. This issue also summarizes the numerous opportunities to collaborate, interact and attend courses all over the world. We urge all to encourage colleagues and friends to take advantages of these opportunities. LETTERS TO THE EDITORS Your Comments and Questions Are Always Welcome Editorial Policy Address your communications to: Editor: Moving Along As part of its democratic commitment, MDS TheMovement Disorder Society welcomes the input of all its members about the 555 East Wells Street, Suite 1100 features and articles that appear in this newsletter. Milwaukee, WI 53202-3823 USA Have a comment or question? Each issue will include Tel: +1 414-276-2145 • Fax: +1 414-276-3349 responses in the “Letters to the Editor” section. All E-mail: [email protected] materials submitted become the property of MDS. PAGE 2 Moving Along • Issue 1, 2013 P R E SID E NT ’ S L E TT E R Dear MDS Members, tional programs. This has been achieved with the help I would like to summarize briefly of the MDS Committee on Rating Scales in Parkin- OFFICERS what the Officers and various MDS son’s disease, under the guidance of Anette Schrag and a most important person in this respect is my col- President committees and task forces have Günther Deuschl, MD accomplished over the course of the league among the MDS Officers, Chris Goetz. This President-Elect past two years, during which time I new structure will not only be a core feature to de- Matthew Stern, MD have had the pleasure of leading velop the scientific tools for our Society, but it will also this wonderful Society. Our Society is constantly be a source of future income for the Society through Secretary growing, not only in terms of membership, but more licensing. This will be a transformation for the Society, Cynthia Comella, MD importantly in terms of world-wide influence to as we now are developing a business branch. Secretary-Elect develop the field of Movement Disorders scientifi- Another major effort during the past two years has Francisco Cardoso, MD cally, and ultimately to improve the care and treat- been the development of a new online-based journal, Treasurer ment for our patients.