Rehabilitation philosophy on the management of multiple sclerosis - Improving the quality of life in MS KOUTSOURAKI E. S., BALOYANNIS S. J.
1st Dept. of Neurology, Aristotle University, AHEPA Hospital, Thessaloniki, Greece
Chairman: Professor S.J. Baloyannis
Rehabilitation has been defined as an active process of change by which a person who has become disabled acquiries and uses the knowledge and skills necessary for optimal physical, psychological and social functioning. Rehabilitation aims to assist individuals in achieving the best posible quality of life by:
A rehabilitation program should be recommended early in the course of the disease. Even when physical symptoms such as fatigue or visual problems are invisible to the therapist, rehabilitation can be very beneficial in improving the general condition of the patient and educating him/her about the disease and its management.
The rehabilitative program is likely to be successful if each person with MS is assessed as an individual before assuming success or failure on the basis of his/her cognitive history. Pleasant surprises do occur.
Key words: Rehabilitation, Multiple Sclerosis.
The encouraging results of recent therapeutic trials in MS have focused the attention of the media, health services and business community in a way never previously experienced. The results have offered renewed hope for many patients and their families, particularly those with the relapsing/remittig form of the disease. An effect on disease progression has recently been demonstrated in secondary progressive MS. Despite this, there remains a large percentage of patients who are significantly disabled and who will continue to progress.
It is important to reassure patients and their families that a variety of services are available, which provide a range of strategies to help combat many of the everyday problems experienced by them. These include general healthcare provision of information, symptomatic management and supportive services.
Rehabilitation has been defined as an active process of change by which a person who has becme disabled acquiries and uses the knowledge and skills necessary for optimal physical, psychological and social functioning. The underlying principle is that the affected person and his/her family are central to the planning of and participation in any rehabilitation program. To achieve this they require an understanding of the condition and the strategies that will help them to cope with it. Education is hence a key factor in the rehabilitation process.
Rehabilitation aims to assist individuals in achieving the best possible quality of life by:
Rehabilitation in MS
The first symptoms of MS tend to occur in young adults, at a stage in their lives when they are establishing their careers, setting up home and having a family. The variable and unpredictable nature of the disease means that people with MS face not only the prospect of increasing disability, but also the uncertainty of when established disability will set in. These problems are lifelong, evolving over decades.
Because all parts of the CNS can be affected, a wide range of diverse symptoms may occur, interfering with mobility, upper-limb function, bladder, bowel, speech and swallowing, vision and cognition. The multiplicity of symptoms and the manner in which they interact often result in complex disabilities that require the knowledge, expertise and collaboration of a variety of healthcare and social service professionals.
The rehabilitation of MS is a constantly changing process because of the rapidity with which changes may occur. The therapist must therefore express confidence in the program but be capable of changing plans and goals on short notice. It is necessary to take a positive and realistic approach to a patient’s changing problems.
A rehabilitation program should be recommended early in the course of the disease. Even when physical symptoms such as fatigue or visual problems are “invisible” to the therapist, rehabilitation can be very beneficial in improving the general condition of the patient and educating him/her about the disease and its management.
An appropriate rehabilitation program, no matter how extensive or how minimal, gives people a tremendous psychological boost because they are working to take charge of their lives. This, coupled with the physical benefits that they can obtain, intensifies the importance of a good program. With a relatively mildy impaired individual, the role of therapist may simply be one of educator, promoting good health, general conditioning and recreation. With more moderate disease, a more aggressive approach must be introduced, such as introducing walking aids or providing assistance with activities of daily living. For a patient with more severe impairment, much more extensive adaptations may be required.
Many factors can complicate the rehabilitation of a patient with MS. Some relate to income, family structure or living circumstances, while others involve spesific effects of the disease on thought processes, which may manifest themselves as depression and/or problems in cognition.
Depression is common in MS, although it is certainly not unique to this disease. It is never cured by aggressive short-term rehabilitation. Longer professional intervention is almost always essential, and depression must be appropriately managed before the rehabilitative process is begun. The rehabilitative and phychological professionals are clearly partners in the management of depression.
It is now well recognized that cognitive problems can and occur in MS. Cognition involves memory, planning, foresight and judgement and the ability to think clearly. For MS centers, cognitive deficits as a complicating factor in rehabilitation have become major issues, in large part because more complicated cases tend to cluster at such centers and the patients need more specialized help. Also, cognitive problems result in poor recognition of deficits as well as an inability to store and retrieve new information, a combinatin which presents a major impediment to rehabilitation.
Often associated with these cognitive problems is a “pseudo” depression in which the individual may burst into tears or laughter inappropriately. This results from a lack of inhibition and will also impede rehabilitation. However, cognitive issues must be in perspective. While many MS people have some cognitive problems, they are rarely severe enough to substantially impede rehabilitation. Some, a minority, have significant cognitive problems and will not be good candidates for rehabilitation. Unfortunately beyond simplistic suggestions, such as substituting computers and pen and paper for decreased memory, there is at present no known effective rehabilitative approach for significant cognitive difficulties.
The care of most disabling in our society is based on crisis intervention, with an emphasis on restoration of body functions. Restorative rehabilitation is therapy designed to enable an individual to attain the highest physical, emotional and functional level possible within the constraints of a chronic disease. Traditional the focus of rehabilitation has been on individual muscle re-education and restoration, but when dealing with MS it must shift to a concern with the overall movement patterns of the patient, with specific consideration given to the key word “function”.
Consideration must be given to self-care and ultimate functional gains. Self-care includes the ability to dress, bathe, eat, toilet, transfer, stair, climb and ambulate. It is important to look not only at movement patterns but at functional activities such as eating.
When assessing any treatment plan, the goals of the patient must be considered. Physical disability has a significant psychological impact removing the sense of control over one’s life. Control, defined in terms of realistic goals, must be placed within the patient’s realm. This is often quite challenging, as many patients with MS may not have realistic goals about recovery and may experience many changes in their physical condition and performance abilities. For example, emphasis with the non-ambulatory individual should be on wheelchair mobility, transfers and self-care rather than on gait training. Programs should be highly individualized and also structured so that the patient clearly understands the treatment goals and what is and is not realistic. Goals also require a flexibility of expectation because the patient’s condition often changes.
With restorative rehabilitation, specific goals are established and success can, to some extent, be determined by how successful the therapist is in bringing the patient to the completion of the goal. Thus when a patient’s progress begins to plateau, a decision as to the effectiveness of the therapy must be made.
In contrast the goal of maintenance rehabilitation is prevention of a decrease in function, whether directed toward a physical attribute as in muscle strength or toward emotional factors. Chronic diseases that have the potential to progress need ongoing attention in an attempt to help the patient to remain functionally stable in the face of a progressing neurological process. To deny people maintenance of their function is akin to voluntarily allowing their disease to progress.
Chronic progressive MS patients often exhaust all of their financial, supportive and psychological resources in short order. Then, in desperation, early nursing home placement often follows. Formal professional maintenance rehabilitation establishes goals of both maintaining the individual physically and maintaining the family unit despite the presense of a disabling disease. Its underlying hypothesis is that if an individual’s capabilities can be maintained for a longer period of time, he/she may do better physically as well as psychologically.
Unfortunately, in the ever changing health care of today, all too often insurance companies and governmental agencies dictate the care that will be provided to a given patient. Superficially, it can appear more economical to treat “maintenance” as “unimportant“. However, in the long run, this attitude will cost all of us far more money and result in far more disability. The establishment of maintenance programs for people with MS should be primary focus of our health care system.
The maintenance program starts with a comprehensive initial evaluaion, after which goals and treatment regimens are established. This is no different from more typical restorative programs. However, the emphasis is placed on goals and treatment to support and improve the present status. The program is specially designed for a person whose status has been declining and would in all likelihood continue to decline without rehabilitative services. With close observation, careful monitoring of changes in status can be made and early signs of potential problems addressed. Such preventative assessments are generally not feasible in most acute care restorative rehabilitation programs.
This type of ongoing rehabilitation is not inexpensive in terms of money, but its importance can not be established enough. Despite negative reinforcement, therapist must be cognizant of its usefulness.
A baseline therapy evaluation should be performed on most MS patients with any degree of disability. The objective data will help document the future course of the disease and permit realistic goals to be set. Because of the potential for rapid change in MS, re-evaluation may be necessary on a periodic basis. With these data, both the therapist and treating physician will be able to detect changes in medical status and determine the effectiveness of treatment. Objective information includes evaluation and quantification of muscle tone, strength, joint range of motion, balance, coordination, pain, endurance and dynamic activities including gait, one legged standing etc. The subjective information includes MS disease history, diagnostic information, current symptoms, prior therapy (physical/occupational/speech), psychological issues (living arrangements, current work status, transportation issues), daily living activities and levels of fatigue.
A rehabilitation plan may then be formulated with goals priorized and formulated for each area accessed. The therapist, the patient and the physician must work together to formulate realistic goals.