Photo of delegates
Paediatric
Neuromuscular
Rehabilitation
Thursday, 18th May
18-20 May
2006
Denmark
Theme:
Preparing for an
Adult Life with a
Neuromuscular
Disease
| NB! Titles link to PDF-copies of presentations or abstracts | |
| 11.00 | Arrival and registration |
| 12.30 | Lunch |
| 13.30 | Welcome |
| 13.40 | The adult pediatric neuromuscular patient. A new challenge for the rehabilitation professionals. Kate Bushby, director, Newcastle Muscle Center, United Kingdom |
| 14.10 | How to prepare for an adult life with a neuromuscular disorder. Evald Krog, nmd-patient, president, Muskelsvindfonden, Denmark |
| 14.40 | The impact on function of currently available drug treatment in neuromuscular disorders. Implications for the rehabilitation process Michelle Eagle, physiotherapist, Newcastle Muscle Clinic, United Kingdom |
| 15.10 | Coffee break |
| 15.45 | Paper presentations in plenum 1. Developing consensus on assessment for ambulant DMD-boys. Elaine Scott, physiotherapist, Muscular Dystrophy Campaign, United Kingdom 2. Motor function measure validation study. Francoise Girardot, physiotherapist, Hospice Civil de Lyon, France 3. Voiding in DMD. Mathilde Backhouse, occupational therapist, Montrose Access, Australia |
| 16.45 | Break |
| 17.00-18.45 | Two parallel and repeated poster sessions A Elaine Scott, United Kingdom: Measurement of change Marie Kierkegaard, Sweden: 6 minutes walking test Ulla Werlauff, Denmark: Re-ambulation by long leg orthoses Birgit Werge, Denmark: Serial casting of both wrists Ulla Werlauff, Denmark: Cough assistance B Benoit Chevalier, France: Physiotherapy in private sector Reidar Melsom, Norway: Follow up in DMD Elisabeth Hammarén, Sweden: Assessments in myotonia congenita Jørgen Diderichsen, Norway: Assessments in myotonic dystrophy Alette Bagge, Sweden: Technology dependent children |
| 19.30 | Dinner |
| Friday, 19th May
| |
| 09.00 | Participation in physically disabled people Gillian King, research director, Thames Valley Children's Centre, Ontario, Canada |
| 09.40 | The pastoral and spiritual care of young people with neuromuscular disorders - facing the questions. Rev'd Canon Edward Pruen, Chaplain for the Treloar Trust, United Kingdom |
| 10.10 | Quality of Life in neuromuscular disorders Imelda J. M. de Groot, rehabilitation physician, Department of Rehabilitation, University Medical Centre St. Radboud, the Netherlands |
| 10.40 | Potentials in narrative approaches to rehabilitation Feiwel Kupferberg, professor, Danish University of Education, Denmark |
| 11.10 | Coffee break |
| 11.30 | Overview of priorities of management Marion Main, physiotherapist, Hammersmith Hospital, United Kingdom |
| 11.45 | What are the priorities in rehabilitation as seen from the patient's point of view? Narratives of the rehabilitation process 1. Told by a parent 2. Told by an nmd-adolescent 3. Told by an nmd-parent with a healthy child |
| 12.45 | Proposal for the establishment of a society for the promotion of rehabilitation in neuromuscular disorders (International Society for Pediatric and Adult Neuromuscular Rehabilitation). Topics, place and dates for the next meeting José Corte Real, PT, Portugal |
| 13.00 | Lunch |
| 14.00 | Paper presentations in plenum 1. Learning potential and psychosocial adjustment in boys with DMD. Jos Hendriksen, child neuropsychologist, Child Rehabilitation Centre Franciscusoord, the Netherlands 2. Improvement of personal qualifications in young people with physical disabilities. Ann-Lisbeth Højberg, occupational therapist, RehabiliteringsCenter for Muskelsvind, Denmark 3. Participating as a team player. Kristian Jensen, director, Danish Disability Sport Information Centre |
| 15.00 | Coffee break |
| 15.30-17.45 | Parallel and repeated poster session and workshop C Thora Hellenes, Norway: Marital life with myotonic dystrophy Hrönn Birgisdottir, Iceland: SMA II participation in daily life Birgit Werge, Denmark: DMD - seating, arm and hand function Jens Spanfelt, Denmark: Quality of life and independent living A. Mikkelsen and E. Danø, Denmark: Choices for independent living I. Fløytrup and A. Kruse, Denmark: Respiratory equipment for independent living D Show of game of electrical wheelchair hockey with players, coaches and parents answering questions and an opportunity to try a ride |
| 19.30 | CONFERENCE DINNER |
| Saturday, 20th May
| |
| 09.30 | Multidisciplinary and multicentre research as a necessity, examples of a research process. Wendy M. King, clinical assistant professor, Department of Neurology, the Ohio State University, USA |
| 10.10 | What the future holds for treatment - the medical and rehabilitational challenges as seen from the perspective of the clinician. Thomas Sejersen, MD, assistant professor, Team for Neuromuscular Disorders, Karolinska Institute, Stockholm, Sweden |
| 10.40 | Development areas within rehabilitation, new challenges. Jes Rahbek, director, RehabiliteringsCenter for Muskelsvind, Denmark |
| 11.10 | The conference in images. |
| 11.25 | Goodbye Denmark 2006 Hello France 2008 |
| 11.30 |
Lunch |
| Departure |
|