Mobilisation assistance - Help to care -


Foreword

A lot of people imagine being fully conscience, but partly or completely paralyzed as an absolute nightmare. Many doctors or employees in curative or caretaking occupations also see that condition, which appears after strokes and manifests for example in the Locked-In-Syndrome, as a hopeless diagnosis, which only requires palliative (life maintaining, not recovering) or maybe stabilising measures. New research results, which were published by Cathrin Bütefisch, Horst Hummelheim, Petra Denzler and Karl-Heinz Mauritz in 1995 and by Ch. Eidhof in 1999, show however, that more than a stabilization ca be achieved through an intense and continuous mobilisation training. Namely, it is a clear improvement of the situation for patients who are afflicted by such neurological illnesses.
Simply said, a lost skill, for example a certain movement, can be re-received through intense and continuous repetition of that movement by mobilisation.
In the present cases of the named studies the mobilisation therapy for patients with powered restrictions on their arms lead to a full regaining of their movement. It seems that the central nerve system has the ability to acquire or relearn powered afflicted body parts through mobilisation, more than ever assumed. The earlier and extensive a patient is stipulated in the rehabilitation therapy, the higher are his chances of fully regeneration. The founder of the LIS Organization for example, a Locked-In-Syndrome patient, passed a daily 6 hour movement training program with the help of his partner.

The project mobilisation assistance in Berlin

Out of that personal experience it seemed to make sense to insert additional mobilisation training into the program of the rehabilitation measures that are realized in the clinic. The L.I.S. association initiated a project that uses this new knowledge and integrates it into the practice of clinics and care taking institutions since May 2004. We like to inspire and support the research in that area.
The L.I.S. association hopes to provide a contribution to reduce the costs for the public through an improvement of the situation for severely afflicted patients, prevention of complete hospitalization (harm to the behaviour of the patients because they are bedridden in the hospital) and life-long disability.
That is why this project was financed completely through the Bundesagentur für Arbeit Berlin-Nord (labour agency of Berlin North) together with the 'SPI consult' as custodian of the state Berlin in line with a labour-market political measure. In a co-operation with the hospital ward for severely skull-brain injured people of the Vivantes clinic in Berlin-Spandau the positive influence of intensive and repetitive mobilization therapy on the situation of patients with neurological-conditioned paralyzation is examined. The results were continuously scientifically evaluated and are to be published later.
For example, it was already possible in one severe case to lead the patient out of the phase of being Locked-In into recovering the ability of grabbing and moving a few steps; a result which the mobilization assistants are rightly proud of.

The goals of mobilization assistance

Tagung in Rheinsberg Because the necessary therapeutic measures, in addition to the classic rehabilitation therapy, are applied, a performance of accompanied mobilization through so called mobilization assistants is a good solution. The mobilization assistants were prepared for their task by the LIS association, as well as being continually advanced trained and they each care for one to three patients intensively. The job is not appreciated and is funded through the labour agency in the amount of 1,000 Euro per month.

The tasks of assistants

  • Escorting patients to therapy
  • Assistance at the therapy
  • Learning individual exercises under the direction of a therapist
  • Application of learned exercises
  • Assisting with simple caring measures (storing of the wheelchairs and placing patients in to wheelchairs…..)
  • Psychological support for the patients
  • Fulfilling patient's needs, like to assist when eating or to move the patient in the wheelchair
  • The mobilization assistance is supposed to render possible the return of the patients from a stationary to an ambulant care at home, in medium and long terms and additionally to unburden family members
With everything it is to be noted that the mobilisation assistance can replace neither the care nor the therapy.

Execution of the project

Experiences of patients and family members show that additional mobilisation training lasting several hours achieves amazing improvements;
so for example in a case six to eight additional training hours beyond the clinical program were necessary in order to obtain the wonderful results seen today. Other patients have had the same experiences, which reports are present to the association, and which wait partially still for their publication.
These reports point out again, why the mobilisation assistance is a necessary addition to the traditional therapy, and in which way our project can render possible the return from severely bedridden patients into a mobile and independent life. The support is not to be mastered by the family members alone, that is why a return home is often very difficult.
That is why one of our substantial reasons for the project is to make this return to the domicile possible and to avoid placement in a nursing home, for which the public has to mostly carry the cost burden.
Fear is reduced in family members through the granting of mobilization assistance. The mobilization assistants take over the support for the patient from the family members and to arrange this with their job life.
Fear is reduced in family members through the granting of mobilization assistance. The mobilization assistants take over the support for the patient from the family members and to arrange this with their job life.

Tasks of the L.I.S. association in this project

  1. The use of mobilization assistants for mobilized aid for the patients and to relieve family members
  2. Scientific backing and evaluation of the project. The use of the mobilization assistants is accompanied scientifically through out the entire time and the impact of the improvement of the patient's situation is examined. The data is to be compared with patients that have not received such intense treatment (control group and/or results of other clinics).

Summary

The goals of the pilot project are summarized as:
  • Improvement of the condition of the patients after heavy neurological illnesses through mobilization aid
    to support and intensify the daily therapy.
  • If possible large re-establishment of the patient's independence within the home, in order to avoid be committed
    to a nursing home as a "last stop"; it is supposed to be achieved through daily supporting additional exercises which are recommended by the therapists.
  • ntegration of the patients into the everyday, including work, life through assistance and support of the patients and their families.
  • Shortening the length of time in which the patients lay in bed in the clinics through improvement of mobility.
  • Qualification of the mobilization assistants for different tasks within the field of care, for example, also, the domestic care.
  • Qualifying insight into the medical care at a selected rehabilitation centre in Berlin for the participants of this method.
  • Sharpening the consciousness for the problems of issues afflicting the handicapped, human support of all that are afflicted.
  • Further training offers together with doctors, therapists and care-giving personnel regarding the treatment of Locked-In patients: information about the most up to date treatment methods as well as up to date research results; psychological training in how to care for, in example Locked-In patients and their families.
  • Intensifying the communication between physicians, care-giving personnel, therapists and patients and their family members through mobilization assistances. So an improved atmosphere can be created for the patients, in order to improve their healing chances and to motivate them to participate in their healing process. The family members can also be deeper involved

Outlook

In order to access results of this project also to a specialist interested public, a convention in the hospital Königin Elisabeth Herzberge (KEH) took place in December 2004. The lectures held are released in 2005 in a convention magazine, like the times before.

1 Bütefisch, C.; Hummelsheim, H.; Denzler, P.; Mauritz, K.-H.: Repetitive training of isolated movements improves the outcome
of motor rehabilitation of the centrally paretic hand In: Journal of the Neurological Sciences 130 (1995), p. 59-68
2 Eickhof, Ch.: Die Therapie der zentralmotorischen Lähmung auf neurophysiologischer Grundlage (Therapy of central powered paralyzation on neurobiological basis) In: Krankengymnastik 51/6 (1999), p. 966-978
3Bütefisch, C. et al.: op. cit., p. 67; Eickhof, Ch.: op. cit., p. 974ff.
4 vgl. Pantke, K.-H.: Locked-in. Gefangen im eigenen Körper (Trapped in one's body) Frankfurt am Main 22000, S. 158ff.