The Consortium of Multiple Sclerosis Centers' Annual Meeting
Introduction
The Consortium of Multiple Sclerosis Centers (CMSC) held its 19th annual meeting this past June in Orlando, Florida. This five-day conference is a collaborative effort between the CMSC, the International Organization of Multiple Sclerosis Nurses (IOMSN), and the Latin American Committee for Treatment and Research in Multiple Sclerosis (LACTRIMS).
Using the theme of "Navigating the World of Multiple Sclerosis," this year's meeting provided information about the MS disease process and the immune system; basic fundamentals of MS care as well as advanced concepts in care and research; progress in diagnosis and MS treatment; strategies for addressing disease progression; and symptom management as well as rehabilitation for individuals affected by the disease.
The CMSC is the largest professional MS organization in the world, seeking to develop and sustain a specialized team approach to meet the needs of those with MS. The CMSC promotes a comprehensive model of MS care, striving to address all of the different ways in which MS affects individuals who are diagnosed with the disorder. This includes the physical aspects of diagnosis, disease progression, symptoms, and treatments, as well as the psychological, emotional, and social impact. The group also looks at other important factors, including family and care partner issues; along with the need for advocacy.
Its members are professionals from all areas of MS care. The list includes neurologists, nurses, physiatrists, counselors, rehabilitation professionals, psychologists, neuroradiologists, clergy, neuropsychologists, educators, social workers, and others. The CMSC's annual meeting gives everyone an opportunity to learn about the latest findings in research, treatment, and rehabilitation, while sharing new ideas for various strategies to help individuals to cope with and overcome some of the challenges which MS presents.
Presentations and Abstracts
Presentations at this year's meeting included:
- Fundamentals of MS care and management, from diagnosis to rehabilitation, encompassing: an overview of MS; disease-modifying treatments and managing relapses; MS rehabilitation; cognition, swallowing, and speech issues; the psychosocial impact of MS; and hope for the future
- Lectures on: whether or not MS is a neurodegenerative disease; if MS is different in Latin America; and the potential for remyelination in MS
- Symposia covering: the focus and accuracy of diagnosing MS in 2005; the evidence shown by MS rehabilitation (including the effectiveness of energy conservation education and the management of communication problems); pregnancy and MS; the diagnosis and prognosis of primary-progressive MS; neurocognitive retraining in MS; alternative medicine and MS; the evolution of MS lesions; the history of MS; neuroprotection and neurogeneration; MS research and care in Latin America; along with understanding and treating pediatric MS
- Workshops and mini-courses covered a range of subjects, from sleep disorders, rehabilitation, and legal issues, to the African-American perspective, mobility aids, and cognitive therapy, along with several other relevant topics
In addition to these sessions, more than 140 abstracts were presented. These too covered a full range of topics relating to MS research, treatment, and ongoing care.
The "Powerpoint" or slide presentations from many of the sessions, as well as the abstracts from the scientific platform and poster presentations, are available to the public by going to the CMSC's website at www.mscare.org. Visitors may find these by clicking on the 2006 upcoming meeting, then clicking on annual meetings, and then scrolling down to and clicking on the 2005 annual meeting. The direct address is: www.mscare.org/members.cfm?doc_id=389.
The MS Coalition's Workshop for Nurturing Children
Of particular interest was the workshop entitled, "Nurturing Children: Coping with Chronic Illness." This was presented by Lara R. Krawchuk, MSW, LSW, MPH, from the Conill Institute for Chronic Illness, and Helen Link Egger, MD, from the Duke University Medical Center. The workshop was planned through the newly formed "MS Coalition," a group of three MS organizations — the CMSC, MSAA, and the Multiple Sclerosis Foundation (MSF) — whose mission, by working together, is to increase opportunities for cooperation and to leverage the effective use of resources for the benefit of the MS community.
Members of the MS Coalition had identified a problem reported by many MS professionals, including doctors, nurses, rehabilitation therapists, and others. As these specialists came in contact with their clients who have MS, and went about their work, a number of clients would often express their concern for their children and the problems they were encountering. While these particular MS professionals were skilled in areas of disease and symptom management or rehabilitation, they did not have the background to offer informed feedback to their clients about family counseling and the problems that their children may be experiencing.
The Coalition decided to offer a workshop at the CMSC's annual meeting that would provide information about children learning to cope with a parent's illness. This would give MS professionals the facts they needed to talk with their clients and provide valuable advice. To follow is an overview of this workshop.
The workshop began with information about depression in individuals with MS. It noted how individuals with MS were at an increased risk of both depression and suicide. Symptoms and causes of depression were noted, along with a reminder that the care partner (often the other parent) may be at greater risk of depression as well.
Certainly depression not only impacts one's quality of life and emotional as well as physical health, but can also impact one's children. Depression can limit a parent's physical and emotional capacity to parent with consistency and patience, which can have a significant effect on a child's cognitive, social, and emotional development. Getting the adequate treatment for depression can greatly improve the situation and diminish or avoid some of these issues related to depression.
Emotional reactions that children may experience when a parent is sick include guilt, anger, fear and anxiety, embarrassment, sadness, and feelings of helplessness and neglect. Unfortunately, few studies have been conducted to determine the effects of parental MS on child adjustment. The effects of maternal depression, however, are documented; maternal depression can cause increased rates of behavioral problems, social and emotional maladjustment, and a deficit in cognitive functioning.
Disorders that children may be experiencing were explained. These included symptoms of childhood depression, psychiatric or anxiety disorders, attention deficit disorder, and oppositional behaviors. Parents need to know that these occur in children whose parents have no illness — and MS is often not the cause. Any child exhibiting unusual behavior should be seen by a physician, evaluated, and given treatment if needed, to help improve the child's emotional, mental, and physical wellbeing.
Parents can help their children by: providing a safe and loving home; developing a good relationship which encourages good communication when upset; teaching the importance of accepting limits; and seeking help when needed. Educating one's children about MS and depression (through age-appropriate conversation) and maintaining an honest and open relationship helps to minimize children's worries and fears.
For More Information
The workshop described above was just one of many informative presentations that were held at the CMSC's annual meeting. These were all aimed at helping the MS professional to understand all aspects of the illness, from research and treatments to social needs and family issues, enabling these MS specialists to play an important role in providing comprehensive MS care. As mentioned earlier, slides of these presentations may be viewed by going to the CMSC's website at www.mscare.org.
We were unable to include more information in this issue from the many presentations given at the CMSC's annual meeting. When possible, we will try to incorporate some of this valuable information in future articles of The Motivator.
