In order to reach its mission statements, IAPRD not only develops educational activities such as symposia and congresses (including the World Congress of Parkinsonism and Related Disorders), but also promotes publications. So, the IAPRD publishes its official journal, Parkinsonism & Related Disorders, as well as textbooks. To optimally channel communication between the research and clinical communities, in order to promote optimal diagnosis and treatment for Parkinson's disease and other movement disorders, Parkinsonism & Related Disorders is supplied free of charge to all IAPRD members, and listed Books can be ordered at reduced prices via the Amsterdam - Free University Press.
Both associate and full members are given a free subscription of the official journal 'Parkinsonism & Related Disorders'. Members are exempt from paying an annual membership fee, though are due to pay administration costs (70,00 Euro/biannual) when not participating to the biannual World Congresses (the participation of which includes this postal handling costs for the first two consecutive years). They are also given a discount on IAPRD-developed books and are entitled to attend the congresses, symposia and other activities organised by the Association.
Click here for online access to the journal.
Parkinsonism & Related Disorders publishes the results of basic and clinical research contributing to the understanding, diagnosis and treatment of all neurodegenerative syndromes in which Parkinsonism, Essential Tremor or related movement disorders may be a feature.
The journal will form a truly international channel of communication between the research and clinical communities.
This easy-to-use app is designed to be used by patients and exercise therapists dealing with Parkinson's Disease and other forms of Parkinsonism as a source of advice and instructions for daily exercises and movements. The app contains over 50 high quality video and text instructions.
The advice and exercises have been compiled by expert researchers and therapists in the field and are divided into a number of functional domains that can cause problems in the daily life of Parkinson's patients. Both scientific evidence and practical experience are making it increasingly clear that specific exercises and advice can support/provide for improvements in the following domains: walking, posture, changing body position (rising from a chair, turning in bed etc.), balance, keeping the body flexible and relaxed, and overall physical condition.
The IAPRD and IPSEN Pharmaceuticals have been so kind to support the app development.
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In my 40-year career, I have had a number of outstanding mentors who sparked my interest in neurology and movement disorders and I will always be grateful to them for inspiring me and for providing guidance, especially in my early development. Selecting the right mentor is one of the most important decisions a young physician or scientist can make. A mentor should not be a “tormentor”, but rather someone who is not only a cheerleader, but also a person of integrity and stature who provides constructive feedback, promotes a positive attitude, and forces the mentee to be creative and to anticipate future trends and needs.
One of the most important traits for a researcher or clinician to develop and cultivate is open-mindedness, a continuous curiosity about all that crosses your path. Your patients will certainly profit from this virtue, but you will profit even more. Curiosity has been a rich source of inspiration for me during my entire career. When I look back on my (happily still continuing) own life as a clinical neurologist, since the early seventies, a huge variety of open questions crossed my path, including uncertainties about how to adequately treat patients (for instance, preventing neurosyphilis in latent syphilitic patients) to understanding empirical treatments (for instance, the effects of corticosteroids in myasthenia gravis patients). I then became fascinated by the challenges in movement disorders, inspired by the etiopathophysiology and treatment of the dopaminomimetic psychosis, as well as the non-motor symptoms, especially hyposmia. After my retirement, I have found time to indulge myself into the (still promising) role of autologous stem cells in the quest to bring down the debilitating manifestations of traumatic, vascular and idiopathic neurodegenerative disorders. Indeed, it was my interest in translational neurologic disorders which made my life, and I sincerely hope and wish that all of you will have the same experiences, and will enjoy daily practising our great profession as movement disorder specialists.
I was taught by two of my mentors, C. Miller Fisher and Ichiji Tasaki, not to believe anything unless I saw it for myself. This has been very good advice. Good to read the textbooks, but don’t fully accept what is written until you see it for yourself. This is certainly also useful in research where, as has been emphasized recently, many research results are not reproducible. And it is valuable advice when seeing patients. Several times I have seen patients where the diagnosis had been given some years before and then accepted without question by subsequent physicians. A look with a fresh eye might well reveal a different diagnosis. Of course, this can be due to evolution of the disorder, but sometimes the first physician was wrong.
When I started my career nearly 45 years ago, in our diagnostic armamentarium we only had spinal tap, EEG (6 channels), analog EMG, plain skull and spine X rays, carotid angiography done through direct carotid artery dye injection, and echoencephalography and pneumoencephalpgraphy (who can still remember these last two tests?). I recall the enthusiasm and amazement we had for the first small and hazy head CT pictures! During my professional career, neurology has developed into an amazing specialty that is able to offer patients not only precise diagnoses, but also individualized therapies. For example, the basic science discoveries in immunology and molecular genetics have already been implemented on translational basis. The future of neurology is very bright. I am positive that young physicians and scientists who choose neurology now will not be disappointed!
I think in this age of ever-increasing corporate regimentation of health care delivery, in which time allowed with patients has decreased and clerical duties have increased, my advice to those clinicians younger than I (which means just about everyone) is to never lose sight of the patients. Listen to them. Look at them (not just at your computer). Rushing through an examination can (and will) lead to missed information and observations. Many a research idea has had its genesis in an observation made during a clinic visit. But beyond the science, rushing through clinic visits deprives us of the opportunity – actually the joy – of getting to really know our patients. Some of my most memorable moments from my years of practice derive from such interactions – attending a University of Nebraska vs. University of Oregon football game in Eugene (my red Nebraska shirt stood out starkly from the sea of green and yellow Duck fans) with one of my patients (unfortunately Nebraska lost – badly - as my Oregonian patient gleefully reminded me); attending a get-together of the Nebraska Young Onset Parkinson’s Disease group at the home of one of my patients on the Platte River right where the Sandhill Crane migration takes place; having patients from Nebraska insist on coming to Memphis, Tennessee for their appointments after I moved there – and bringing kolaches with them since they knew I have an affinity for them; receiving perceived (and very tongue-in-cheek) necessary educational books from patients (specifically “Fear and Loathing in Las Vegas”); and many more. Those are memories that cannot be replaced or forgotten, memories that make a career more than just a job.
We are living in an era of remarkable scientific advances that are occurring at a dizzying pace. There are increasing demands on academic physicians to concentrate on or specialize in more focused areas even within a subspecialty such as movement disorders. Importantly, interest in our field exploded with the ability to demonstrate and discuss large numbers of patients through videotape presentations, initially at international meetings such as the American Academy of Neurology and then with the founding of the first journal with a videotape supplement, Movement Disorders; both of these developments were particularly driven by two important fathers of our field, Stan Fahn and David Marsden. Unfortunately, the demands for sub-subspecialization have resulted in a devaluing of expertise in movement disorder phenomenology and diagnostic acumen. This has had important negative consequences for patient care. For example, I have seen this result in an over-reliance on genetic testing, sometimes attributing a clinical syndrome to completely unrelated and sometimes questionably relevant genetic findings (e.g., variants of uncertain significance) or in the submission of a patient with a functional/psychogenic movement disorder to invasive treatments such as deep brain stimulation. From my perspective, even the strongest movement disorders clinician-scientist needs to retain an interest in and enthusiasm for clinical skills, particularly the phenomenological underpinnings of our subspecialty. Indeed, this remains one of the most enjoyable and challenging aspects of our field that sets us aside from most other areas of medicine. The best movement disorders training programs in the world are those that combine training in the latest developments of neuroscience with a basic appreciation of the importance of the astute clinician.
I am often asked - where exactly is Fukuoka in Japan? Most people haven’t heard of Fukuoka. It is located on the Kyushu Island, the largest and the most southwesterly of Japan’s four main islands. I was born in Tokyo and moved to Fukuoka more than 20 years ago and attended Fukuoka University to study medicine. Back in those days, I was a so-called “general neurologist”. Over the span of my career I have been engaged in providing medical care for patients with serious conditions such as stroke, epilepsy, meningitis, multiple sclerosis, etc. while also teaching students and trainees at the same time. My clinical practice experience in Fukuoka indeed turned out to be very valuable. My first encounter with a Perry disease patient occurred in Fukuoka. Perry disease has since become the longstanding focus of my research. Perry disease is a unique familial Parkinson disease. Starting with this patient, we went on to conduct extensive family research and reported the first case of Perry disease in Japan. After studying in the United States at the Mayo Clinic in Jacksonville, Florida, we began international collaborative research on this disease, and finally discovered that it was a pathologically and genetically distinct disease. Eventually this collaboration led us to propose an internationally-recognized diagnostic criteria for Perry disease. Looking back, meeting this Perry disease patient in Fukuoka was a fateful encounter that set the stage for a productive career pursuit for me. In addition, Kyushu is a unique region with a large number of carriers of the rare HTLV-1 virus. Due to this distinctive local feature, there were many opportunities to see and study HTLV-1 related myelopathies in Kyushu. Furthermore, genetic prion disease - GSS has also been found to be concentrated in the Kyushu region. All these disease areas are important research themes of our Department of Neurology at Fukuoka University. When I was at Chiba University, I learned from Professor Keizo Hirayama that neurology shows some of the strongest symptomatology of all medical fields. I encourage you to understand and pay the utmost attention to patient symptoms in your clinical practice. Working with Dr. Wszolek and Dr. Dickson at Mayo Clinic, I learned to appreciate the fascinating aspects of research. What I would like to say to you all aspiring young neurologists is that you will learn the most from the patients you will encounter and care for and from a passionate mentor who can guide you through your journey. Through your training, I hope you will continue to advance the intriguing field of neurology and help many patients along the way. With that, I invite you to go ahead with your questions and a discussion of your clinical interests.
What are the most influential and inspirational articles in movement disorders? Find out what IAPRD members think in our new series Influential Research in Parkinsonism and Related Disorders (InfluencePRD).
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Dr. Mark Hirsch, Senior Scientist at Atrium Health in Charlotte, North Carolina, USA. Dr. Hirsch has selected a 2010 article from the New England Journal of Medicine by Snijders and Bloem entitled Images in clinical medicine. Cycling for freezing of gait.
A Parkinson patient is referred to your clinic. The man can’t walk but claims that he can ride a bicycle! This sounds absurd, but it was actually documented by Snijders and Bloem in a novel case study of a man from The Netherlands who had full-blown Parkinson’s disease. In a video that went viral in 2010, the man fluidly rides his bicycle through a parking lot (and out into the street) yet cannot walk once he dismounts. It inspires me to see the enormous potential of people with advanced stage Parkinson’s disease. In addition, this article illustrates how little we understand about Parkinson’s disease, how much there is left to discover about the workings of the parkinsonian brain, and the efficacy of non-pharmacologic therapies. Snijders and Bloem teach us that conventional thinking won’t change health care when it comes to Parkinson’s. This is an exciting field that is still wide open for discovery, education, exploration, collaboration, and innovations in methodologies, concepts, instrumentation and interventions.
Dr. Hirsch completed NIH training in neurorehabilitation research and Parkinson’s disease at Johns Hopkins (‘96-‘99) and advanced training in movement disorders at the Heinrich-Heine University of Dusseldorf, Germany (2000). His current research is focused on understanding how physical exercise and social capital (which deals with issues of trust and the value of networks to connect patients to communities) affect neuroplasticity in the basal ganglia and how changes in basal ganglia function affect physical and social performance. Dr. Hirsch is a member of the PRD Editorial Board and Chair of the Neurodegenerative Diseases Networking Group of the American Congress of Rehabilitation Medicine.
Dr. Joseph Friedman, Professor and Chief of the Division of Movement Disorders in the Dept of Neurology of the Warren Alpert Medical School of Brown University, has selected a 1999 article from the New England Journal of Medicine entitled Low dose clozapine for the treatment of drug-induced psychosis in Parkinson’s disease.
I am likely biased in my choice of a milestone article, partly because my publications have focused on behavioral problems in PD, particularly psychosis, but probably more because I was the Principal Investigator and first author of this study. The study was funded by the Orphan Drug Division of the Food and Drug Administration. There was a widespread belief that the NIH would not fund studies that fell in the then-netherworld that was the interface between neurology and psychiatry. This was the first multi-centered, double blind, placebo controlled treatment trial of any intervention for any behavioral problem in Parkinson’s disease. As such, there were no validated measures for treatment response so several were used, with the overarching question being, not so much efficacy, but tolerance in terms of motor effect. The power analysis was for side effects, not benefits. The study was a great success. The drug was not only markedly beneficial in every metric but improved tremor without worsening any motor function. The psychiatric benefit was as large or larger than any psychiatric improvement for any psychiatric condition, reported then and now. The doses used were miniscule compared to those used in schizophrenia but the risk of granulocytopenia is thought to be the same so close blood monitoring is still required. The difficulties using clozapine have led to numerous trials of newer antipsychotics but, more importantly, established a beachhead for the expansion of research into non-motor aspects of PD.
Joseph H. Friedman, MD, FAAN, FANA, did his neurology residency training at the Neurological Institute of New York, 1979-82, then moved to Rhode Island. He has the Stanley Aronson Chair in Neurodegenerative Diseases at Butler Hospital and is Professor and Chief of the Division of Movement Disorders in the Dept of Neurology of the Warren Alpert Medical School of Brown University, and Adjunct Professor in the School of Pharmacy of the University of Rhode Island. He has served on the editorial boards of Parkinsonism and Related Disorders and Movement Disorders, and was Editor in Chief of the Rhode Island Medical Journal from 1999-2018. He was an original member of the Parkinson Study Group, a member of its Executive Committee, and has been clinical director of the American Parkinson’s Disease Information and Referral Center since 1984. His research has focused on behavioral aspects of Parkinson’s Disease.
Dr. Rukmini Mridula Kandadai, Associate Professor at Nizam’s Institute of Medical Sciences, Hyderabad, India, has selected a 2010 article from Archives of Neurology by Weintraub et al., entitled Impulse control disorders in Parkinson disease: a cross-sectional study of 3090 patients.
A 33year old man with Parkinson’s disease of 7 years duration, well controlled on levodopa (300 mg/day) and pramipexole (4.5mg/day) came to the hospital for a check-up. He tried to grope a nurse and was arrested for sexual misbehaviour. The patient was released after the neurologist testified that the behaviour was secondary to the use of dopamine agonists. His impulse control disorder (ICD) was controlled after stopping pramipexole and increasing levodopa dose. This power of dopaminergic agonists to cause havoc in the lives of patients both professionally and personally has been well documented in the Dominion study by Daniel Weintraub et al. Among the 3090 PD patients who were evaluated, 13.6% had ICDs. The use of a dopamine agonist resulted in increased risk of developing ICDs with an odds ratio of 2.72. This study was the first to look a large population of PD patients with ICDs. This has changed the pattern of treatment of PD patients with a careful and watchful prescription of dopaminergic agonists worldwide. This has also helped us in understanding the impact of basal ganglia on reinforcement learning. The search for the perfect therapy for Parkinson’s disease goes on . . .
Weintraub D, Koester J, Potenza MN, Siderowf AD, Stacy M, Voon V, Whetteckey J, Wunderlich GR, Lang AE. Impulse control disorders in Parkinson disease: a cross-sectional study of 3090 patients. Arch Neurol. 2010 May;67(5):589-95.
Dr Rukmini Mridula Kandadai is currently working as an Associate Professor in Department of Neurology, Nizam’s Institute of Medical Sciences, Hyderabad, India. She completed her training in Neurology in the same Institute in 2008 and is working with Prof. Rupam Borgohain in the field of movement disorders. She is a clinician and is a part of STN-DBS team in NIMS and follows more than 400 patients who have undergone implantation. Her current research is on the impact of lead positioning on the motor and non-motor changes after STN DBS. She is a founding member of Movement Disorders Society of India as well as the Parkinson’s Research Alliance of India.