Multiple sclerosis is an incurable disease. Immunomodulating drugs are effective only in some patients with relapsing-remitting disease. And everyone, at every stage of the disease, can be helped by rehabilitation, understood broadly, interdisciplinary, carried out by a team of specialists.
In 2003, they were developed and published by EMSP (European MS Platform) and RiMS (Rehabilitation in MS) “Recommendations on Rehabilitation Services for Persons with Multiple Sclerosis in Europe. These standards have become part of the “European Code of Good Practice In MS”, approved by the European Parliament. According to these standards, the goal of rehabilitation in MS should be to improve everyday functioning, mobility, communication and broadly understood social integration. Such rehabilitation requires the involvement of an interdisciplinary team consisting of a neurologist or rehabilitation physician, psychologist or neuropsychologist, physiotherapist, occupational therapist, speech therapist, urology nurse, social worker and a personal assistant to the person with MS. The most important member of the team is, of course, the person with MS himself. Since MS is very different, each rehabilitation program should be determined individually. In special cases, it may be necessary to involve or consult other specialists, e.g. a sexologist, urologist, gynecologist, ophthalmologist, orthopedic surgeon, general practitioner.
In Poland, it is practically impossible to create such a comprehensive therapeutic team at home. It is difficult to get home physiotherapy co-financed by the National Health Fund. The time of rehabilitation at home is up to 80 treatment days in a calendar year. During it, up to five treatments a day can be performed. People who move independently can benefit from outpatient physiotherapy. The National Health Fund finances up to five treatments a day in a ten-day therapeutic cycle.
There are 2 centers in Poland that rehabilitate people with MS in accordance with European Union standards. These are: the National Rehabilitation and Housing Center in Dąbek near Mława (WWW.dabek.of.pl) and the Rehabilitation Center in SM in Bornem Sulinowo (www.centrumsm.eu). They provide physical rehabilitation, psychotherapy and speech therapy, occupational therapy, and specialist consultations.
How a person with MS is rehabilitated depends not only on the type of disability but also on the progression of the disease. People newly diagnosed most need the help of a psychotherapist who will help them find a new situation. It is also good for newly diagnosed people to find a form of movement for themselves that will not only engage all muscle groups, but also bring pleasure. They should develop the need for daily physical effort, it allows not only to strengthen muscles, but also improves self-esteem and mood, makes you spend less time in the four walls with your thoughts. It will be easier for a physically fit person to recover, even after a severe relapse. It should be remembered that all endurance sports are not recommended. A person with MS should learn to listen to their body and exercise to the limit of fatigue. This limit is variable, depending on how the sick person feels on a given day and how much time he has spent so far on movement.
With the emergence of greater motor disabilities, it becomes necessary to use the help of a professional, physiotherapist. It is important that he or she has experience with people with MS. Badly conducted physical rehabilitation may also worsen the patient’s functioning. Particularly effective is the use of PNF (Proprioceptive Neuromuscular Facilitation) exercise, which is based on the possibilities of undamaged, more efficient motor spheres (the strongest, painless, with the greatest range of motion) and uses them to obtain the activity of weaker areas of motion based on the arousal transfer mechanism.
In addition to kinesiotherapy, a great importance in the rehabilitation of people with MS is, among others, hydrotherapy (swimming pool, water massage, exercises performed in the water), cryotherapy (if the time after the treatment is used for intense movement exercises) and hippotherapy (the movement of the horse naturally stimulates the muscles of the whole body).
Movement restrictions in MS (sclerosis multiplex) affect not only large muscles. Problems also arise with the hands, as well as with the hands themselves. Contrary to appearances, trouble with the hands is more difficult in everyday functioning than the need to use a wheelchair. Efficient hands mean independence, the possibility of self-service when eating, dressing, in the toilet, in the bank … Unfortunately, we exercise our hands less often than our legs, which results from both the unavailability of occupational therapy and the neglect of the problem. As part of physical rehabilitation reimbursed by the National Health Fund, only kinesiotherapy of large muscles is usually performed. Therefore, it is good to stock up on the appropriate accessories yourself (balls of different hardness, etc.) and do not forget about your hands during everyday exercises. It is worth to like handicrafts such as crocheting or knitting. You can join groups in the PTSR that deal with various types of activities that require hand work (molding in clay, painting).
Although speech therapy is one of the guaranteed benefits, obtaining this type of reimbursed advice is not easy. Meanwhile, speech disorders, chanted or blurred speech make social life very difficult. It is difficult to maintain contacts with the environment when you cannot communicate with them efficiently. It is worth using the advice of a speech therapist during your stay in a rehabilitation center. You can also use the workbooks and guides available on-line on the website of the Polish Multiple Sclerosis Society.
Occasionally, multiple sclerosis causes cognitive problems. Usually these are short-term memory disorders, difficulties with concentration, focusing attention, choosing the right vocabulary (the right word is “at the tip of the tongue”), planning activities. The difficulties of people with MS are completely different than those affected by Alzheimer’s disease. A person with MS may not remember where the keys are, but they always know what they are and what they are for. He may not remember his cousin’s name for the moment, but he knows exactly who she is. Support and therapy in such cases should be provided by a neuropsychologist. Unfortunately, access to this type of specialist is generally quite limited. Meanwhile, the mind can and should be exercised like an arm or a leg. He should be given the right amount of stimulus other than contact with the TV set. All word games and activities from scrabble to solving crosswords, some logical computer games such as “train your brain” are helpful. It is also worth using aids that facilitate functioning: organizers, calendars, electronic reminders, etc.
Text: Iza Czarnecka