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No. 39	Spring 2009	Facts Sheet RM852MS

Side-Stepping the Barriers

Exercise, Multiple Sclerosis and Challenges - an Overview

Even in the earliest stages of MS there is a role for physical therapy/exercise. In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. A study published by researchers at the University of Utah in 1996 was the first to demonstrate clearly the benefits of exercise for people with MS. A 2006 Australian study similarly concluded that exercise is unlikely to have any deleterious changes in fatigue and function. The National Multiple Sclerosis Society, USA, cites (2008) a growing body of evidence that improvement in mobility, activities of daily living, quality of life, prevention of complications, reduction in healthcare utilization, and gains in safety and independence may be realized by a carefully planned program of exercise, functional training, and activities that address the specific needs of the individual.

Late News - Northern Rivers Community Transport is conducting a 2009 survey in order to find out more about the transport needs of residents in the Northern Rivers who travel in wheelchairs or use mobility devices/aids. This knowledge will be used develop services or advocate for appropriate services within the region. Participation by people with MS is strongly encouraged. Click here for details

THE CHALLENGE

Translating this research into programs that are meaningful to an individual with MS is the challenge. A useful starting point is to broadly identify individual care needs and to develop exercise benchmarks sympathetic to those needs. Four 'phases' of MS care needs are regularly identified in research with each phase reflecting a number of key issues and approaches to service provision. These phases do not reflect an individual's disease progression. Rather, they provide a pragmatic framework for discussion and a structure that enables the systematic identification of a wide-ranging list of service needs. The timing of support provided is therefore of major importance in delivering appropriate care. The individual needs of each person with MS must be considered, as each person's experience is unique. Ideally, Services need to 'fit well' with the concept of lifetime continuos care and revised as needs change. Read more about the four phases of care needs.

COMMON BARRIERS

A common barrier impacting upon the ability of people with MS to engage in conventional exercise is that they may be unable to move their muscles normally due to damage caused in the central nervous system. People with MS (pwMS) have a neural condition, whereby their brain often can't generate enough neural input to cause muscles to contract and move in a fully co-ordinated way. This can be accompanied by broader based muscle atrophy resulting from a lack of use. These constraints are compounded by a range of other, and at times interacting, issues. A study titled 'Living with Multiple Sclerosis in New South Wales at the beginning the 21st Century identified 20 such issues - including 87% of pwMS experience more than average levels of fatigue, 68% experience heat intolerance and 58% can experience cognitive problems .Read more about this study. Collectively these barriers provide significant challenges in developing and delivering the exercise programs that are so essential for pwMS.

UNDERSTANDING MS POPULATIONS

MS Australia observes that people with MS experience specific problems that may affect their performance of strength and cardiorespiratory exercises and that an understanding of the MS population is required for the successful implementation of such exercises. To assist with this, in 2009 it released a research based publication titled '' Strength and cardiorespiratory exercise for people with multiple sclerosis (MS) - a guide for health care professionals."

MS 'friendly' ACTIVITIES

Participating in ongoing physical activities that, by their nature, complement muscle movement can be a good starting point. For example, horse riding is a unique form of exercise that has long been identified as of benefit to pwMS. The complex movement of the horse helps to improve coordination, balance, muscular development and fitness. Hydrotherapy (aquatic exercise) can also be highly beneficial as water helps people with MS move in ways they otherwise may not be able to manage. Sailing programs conducted by Sailability Australia are also reported as highly beneficial, Massage therapy addresses problems associated with muscle inactivity by activating the immune system, assisting the venous flow of blood and encouraging lymphatic flow. It also stimulates the sensory receptors in the skin and stimulates endorphin production, reducing pain. What is common about these sorts of activities is that muscle stimulation does not rely only on neural input but is enhanced by some form of 'external' stimulation. More about exercise related activities..

SIDE STEPPING THE BRAIN

In July 2009 Rachael Mason, from the Institute of Food, Nutrition and Human Health at Massey University, New Zealand, provided a presentation to the Australasian Rehabilitation Conference in relation to a study at Massey that addressed the issue of diminished neural input to facilitate muscle contraction. In discussing the study Rachael said, �We wanted to apply vibration therapy to a group who could benefit the most, People with MS, because they can't use their muscles in a fully co-ordinated way, often don't get any physical activity. Some of the health problems they end up with are, in fact, related to the fact they are not exercising so there is real potential for these people.� Rachael conducted the study as her Masters of Science Exercise Physiology project.

The purpose of this study was firstly to investigate whether 8 weeks of whole body vibration (WBV) training was an acceptable form of exercise for Multiple Sclerosis (MS) patients and secondly what effect may it have on measures of functional capacity. This is believed to be the first study to investigate WBV as an exercise training modality for MS patients. The study was supported through funding from the Palmerston North Medical Research Foundation. The study supervisor Dr Steve Stannard said the trial was devised to see whether side-to-side alternating vibration therapy was able to assist MS sufferers, who often became unable to move their muscles normally due to damage caused in the central nervous system. Dr Stannard went on to say that the vibration stimulus is thought to cause a reflex contraction of muscle so in MS patients this might be therapeutic - it's a way of side-stepping the brain and making the muscles contract.

Fifteen MS participants volunteered for WBV training three times a week on a commercialised Galileo Sport� vibration machine with an oscillating platform. Training consisted of two four week blocks based on an increasing stimulus training programme (overload principle). The first fours weeks involving five sets of 1-min WBV with 1-min rest in between with increasing vibration frequency (15-25Hz, 2.6mm-4.1mm amplitude); the second four weeks training increased to eight sets of 1-min WBV (15-20Hz, 6.1mm amplitude). Functional performance measures (Timed up and Go, Standing Balance, Functional Reach and Timed walk) and quality of life questionnaire (SF-36) were conducted prior to training, at 4 weeks, 8 weeks and 2 weeks (10wk) following the completion of the training.

Study Results and Conclusions: The 10m walk test showed significant improvements at the 2m, 8m and 10m measure between pre vs. 8wk (P<0.05) and pre vs.10wk (P<0.05). Timed up and Go demonstrated a significant time effect (P<0.05). Standing balance showed significant improvements at pre and 4 week (p<0.05) and pre and 10 week (p<0.05). This is the first study to investigate WBV as an exercise training modality for MS patients. It was shown that not only is WBV training safe, well tolerated by MS patients but it also improved standing balance and walking speed in MS patients. It is hoped to submit details of this study for publication to a peer-reviewed journal before Christmas 2009. Read some of the comments of participants during the study.

BRAIN PLASTICITY

In the frontiers of Brian Science there are a growing number of reports about how neural pathways can be side-stepped by alternate stimuli with the aim of improving functionality. Many of these reports also observe a capability of the brain (termed brain plasticity), over time, to develop new pathways that recognise this improved functionality. Read more about brain plasticity and MS. The publication The Brain that Changes Itself - Norman Doidge MD also provides details of many case histories. The book is about the discovery that the human brain can change itself, as told through the stories of the scientists, doctors, and patients who have together brought about the transformations documented in the book. While MS is not specifically referenced in this publication interesting parallels can be drawn. This overview of the importance of exercise for PwMs would be lacking if readers were not also encouraged to learn more from developments in this field of research.

BUILDING UPON THE MASSEY RESULTS

The Massey School of Sport and Exercise Science in conjunction with the Multiple Sclerosis Society's Central District Office provides an ongoing exercise Clinic for pwMS. Each program accommodates 20 people. This is a practicum course that sees third-year sport and exercise science students become personal trainers, guiding clients through a workout each week. Dr Lucus Dreyer said the clinic gives those involved the chance to get a tailored workout they couldn�t get anywhere else. The student works with the client on cardio fitness, with weights and at balance training, and it seems to be getting results. It is hoped the clinic will run every year in conjunction with the Multiple Sclerosis Society�s Central Districts office. Field officer Philippa Russell says the clinics are proving a huge success. �The feedback is all positive both in terms of the physical side of things, and with the camaraderie they foster. I really hope this partnership continues.

The clinic builds on the outcomes of the project carried out by Rachael Mason. Dr Dreyer says the study involving whole body vibration was a success and the therapy will be added to the programmes of clients with a more advanced form of the disease. The main focus of the programme is to improve cardiovascular fitness, as that deteriorates quite dramatically once walking ability is affected by the disease. Vibration training is used to help give those clients adequate leg strength motor ability to do other forms of exercise. Some participants start with the vibration training once their strength and fitness have improved to a level that they can tolerate in combination with other exercises. Dr Dreyer says the program gives students sound practical experience. �They have to come up with the exercise programme themselves and tailor it to the client�s needs, and then train them one-on-one,� he says. �It�s good preparation for the workforce.� Read some of the comments of Clinic participants.

OVERVIEW OF VIBRATION ENHANCED EXERCISE

The publication Canadian Chiropractor provides an overview of research relating to vibration therapy and is recommended reading. Shortly stated, the physiological basis behind the therapy is simple: vibration platforms vibrate up and down over a distance of a few millimetres, up to 50 times per second, thereby naturally stimulating the stretch reflex to, in turn, create an involuntary muscle contraction. Originally commercialised for use in a sport and fitness environment it is gaining recognition as a rehabilitation aid for people with a range of disabilities. The vibration 'energy' is transferred from the platform via a range techniques. The most common of these is by standing or lying on the platform, via arm straps (upper body work) or combinations thereof. Within one minute, a patient can undergo up to 3,000 muscle contractions. This involuntary stretch reflex leads to the many benefits that vibration exercise therapy can provide.

Vibration exercise therapy is well suited as an effective exercise solution for those having difficulty engaging in a conventional exercise program due to physical limitations. Research has shown similar strength gains from 20 minutes of vibration exercise as compared to an hour of conventional exercise. Moreover, many people with disabilities are simply not able to effectively engage in 'conventional' exercise. Strength and flexibility training can initially be done in static, pain free range of motions. Patient populations reported to have benefited from this include those with multiple sclerosis, fibro myalgia, spinal cord injury, osteoporosis, and Parkinson�s Disease, to name a few. Some interesting experimentation and innovation is taking place in techniques for maximising the transfer of vibrational energy to people in wheelchairs. For example, while seated in a wheelchair vibration transfer is enhanced by allowing the vibrations to travel via the tyres of the wheelchair (solid tyres only and not electric wheelchairs or scooters) to the lower back and upper leg area.

IN SUMMARY

Incorporating a meaningful exercise regime in one's lifestyle is a long term commitment for pwMS. Professional guidance in formulating and revising an appropriate exercise plan is important. Programs that include options to participate in group exercises (involving other pwMS) is an important aspect of the NZ experience. The involvement of the MS Society as a partner in the process helps to engender 'unity of purpose'. Institutional assistance strengthens professional cultures relating to the importance of exercise for pwMS and may also address some cost issues. Performance standards (based upon reasonable expectations) need to be both quantitative and qualitative - the importance of enhancing quality of life perceptions was recognised in the NZ trial. Incorporating an element of 'try before you buy' helps to minimise possible apprehension by potential participants - it also helps to create awareness - the NZ vibration trial ran over an 8 week period followed by an ongoing exercise program that also incorporated vibration therapy. Private sector participation helps to establish broader based long term service delivery. Vibration therapy, properly employed, can play an important, and in some circumstances, unique role in formulating exercise programs for pwMS.

This area of the Road Map identifies a number of related references and topics

Facts Sheet RM874MS

Service	Agency	Overview	Contact	More
Recreation, Sport, Tourism and the Arts	NICAN is funded by Family and Community Services	Nican is an information service on recreation, tourism, sport and the arts for people with disAbilities and supports an Australian society where any recreational opportunity values diversity, supports freedom and choice and strengthens inclusive communities	1800 806 769	Visit
Exercise Groups	Community Health Education Groups Grafton to Tweed	CHEGS offers workshops on nutrition & weight management, exercise, Tai Chi, yoga and memory enhancing. A variety of exercise classes are available including gentle exercise, strengthening, stretch and back care.	Mary Ward CHEGS Coordinator 6620 7523	Visit
Exercise Video	The National MS Society (USA) and Healthology	A 5 minute video to help you learn more about the positive benefits of exercise and good ways to get yourself moving�and have fun while you�re doing it! .		Video
Sailing and Boating	Sailability Australia	Sailability Australia's key objective is to encourage and facilitate sailing and boating throughout Australia for people with disabilities in social, recreational and competitive activities. More about Sailability and MS	Lynelle Boyd 6686 5469 Lake Ainsworth Lennox Head Other Localities	Visit
Horse Riding	Riding for Disabled Association of NSW provides people with disabilities opportunities to enjoy activities connected with horse riding.	Horse riding is an unique form of exercise and rehabilitation. The complex movement of the horse helps to improve coordination, balance, muscular development and fitness. Also assists in the development of personal confidence and self esteem. Read more about these benefits	Kerry Johnston 6687 8266 Other Localities	Visit
Vibration Therapy	Massey University, New Zealand	Vibration exercise therapy is well suited as an effective exercise solution especially for those having difficulty engaging in a conventional exercise program due to physical limitations.	See April 2009 topic	Visit
Aquatic Exercise Hydrotherapy	National M.S.Society USA Guidelines	Often recommended because it provides optimal exercise conditions for the person with MS.	Your local Physiotherapist	Visit
Massage Therapy	Regular remedial massage can help a person with MS to better manage muscle pain and reduce stress. Massage also promotes a feeling of well being.	For people with MS, massage activates the immune system, assists the venous flow of blood and encourages the lymphatic flow. It also stimulates the sensory receptors in the skin and stimulates endorphin production, reducing pain.	See August 2003 topic	Visit
Rehabilitation in MS	National Multiple Sclerosis Society USA	Rehabilitation in MS is a process that helps a person achieve and maintain maximal physical, psychological, social, and vocational potential, as well as quality of life consistent with physiological impairment, environment, and life goals. Achievement and maintenance of optimal function are essential in a progressive disease such as MS.		Visit
Complementary Therapies		For information about complementary therapies and MS refer to the Rehabilitation and Therapies area of this Road Map		Visit

Some other areas of this Road Map that reference topics associated with Exercise, Sport and Relaxation are as follows

Bowen Therapy
Brain Gym
Dietary Factors
Facial Reflexology
Feldenkrais and Body Movement
Meditation
Memory Management

MS Wellness Day
Naturopathy
QI Gong and healing
Quality of Life
Reflexology
Rehabilitation & Therapies
Reiki
Respite Care

Next - Regional Discussion Forums

Related Reading

Lifetime Continuous Care
MS Australia, in a 2008 submission to the Australian Government, highlighted the need for improved coordination in the delivery of dedicated lifetime continuous care programs and services (including respite) for people with MS. It went on to say that Australians living with MS and their families need viable alternative care models to those currently available. Many support programs are designed for static disability groups or ageing, and do not cope with increasing and changing needs. The submission observed �people with MS pose a significant challenge due to the changing nature of their condition which does not respect waiting lists� A priority in dealing with the unmet demand is overhauling the interfaces of the various care and support programs with and across government jurisdictions. Executive Summary

Multiple Sclerosis Needs, Issues and Expectations
Developed (2008) by the NSW Northern Rivers MS Network of Care, this area of the Road Map highlights the relationship between studies relating to MS prevalence cross referenced to benchmarks for addressing care needs according to disability level. Includes details of the Charter of Individual Rights and Expectations and identifies the top 20 ' common issues' ranked by frequency of reporting as identified by 2618 people with MS in NSW. A useful checklist for service providers and the MS Community.

Rehabilitation Recommendations Persons with Multiple Sclerosis
In June 2007, the Medical Advisory Board, National Multiple Sclerosis Society USA published 'Rehabilitation Recommendations for Persons with Multiple Sclerosis' by way of guidelines for physicians, nurses, therapists, insurers, and policy makers regarding the appropriate use of rehabilitative therapies in MS. These guidelines define rehabilitation in MS as a process that helps a person achieve and maintain maximal physical, psychological, social, and vocational potential, as well as quality of life consistent with physiological impairment, environment, and life goals. Achievement and maintenance of optimal function are essential in a progressive disease such as MS. The guidelines observe that rehabilitation is considered a necessary component of comprehensive, quality health care for people with MS, at all stages of the disease, occurring in many scenarios and practitioners should consider referral of individuals with MS for assessment by rehabilitation professionals - including rehabilitation physician and occupational, physical, and speech and language therapists practitioners - when there is an abrupt or gradual worsening of function or increase in impairment that has a specific impact on the individual's mobility, safety, independence, and/or quality of life

Quality of Life when living with MS
Measuring Quality of Life in people with Multiple Sclerosis: Overview of a presentation (2006 ) by Dr Gary Fulcher the NSW MS Society's Principle Clinical Psychologist and Research Director - includes a study by De Toffol, E (2005): Doctorate of Clinical Psychology/Master of Science dissertation - University of Sydney. Quality of life and health status are quite distinct concepts. A purely �health-status� approach to MS rehabilitation underestimates the challenges faced by people with MS. Studies relating to the quality of life perceptions of people with MS, show that psychosocial aspects are represented much more frequently than physical aspects

About Brain Plasticity and MS - Professor Kraft - MD, MS, principal investigator of the Multiple Sclerosis Rehabilitation Research and Training Center at the University of Washington.
As we learn more about the inner workings of the thinking processes of people with MS using qualitative interview techniques, and more about compensatory brain function through functional magnetic resonance imaging (fMRI) studies, we are becoming aware of the intense effort put forth by people with MS to function as well as they do and the role of brain plasticity in allowing this to occur. Previously discrete regions of brain activity become spatially arranged more diffusely � a necessity, as MS lesions destroy old neuronal pathways. This may account for the difficulty in multi-tasking often seen early in the disease process. Consequently, we are now suspicious that isolated system testing � whether in the motor or cognitive sphere � may not give a completely accurate assessment of function in the real world in which some degree of multitasking is a prerequisite for success. I believe that we are scratching the surface in our understanding of this at present - rehabilitation is what people with MS want" - read more about Professor Kraft's observations.

Learn more about developments in the field of Brain Plasticity.

About the Northern Rivers Multiple Sclerosis Road Map	Facts Sheet RM874MS
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