Rehabilitation – there is a lot to do

A spinal cord injury is a serious turning point in anyone's life. All of a sudden everything changes and becomes new, unusual a^nd daunting. At first, the main focus is on the loss of mobility, on no longer being able to walk and, at best, only having limited use of your arms. It takes time to become aware of how many of your body's functions are affected by the spinal cord injury, and that to some degree, you are going to have to “relearn” how to live.

What is the aim?

The aim of rehabilitation is to make you an expert on your own particular disability. We would like to restore your health to the greatest degree possible so that you can engage actively in life and to provide you with all the information you need to stay healthy. This means that you will not only have to acquire new knowledge relating to the spinal cord injury, but that you will also have to broaden and strengthen your skills in order to cope with your new circumstances.

A central aspect of all types of rehabilitation is to encourage self-management and to increase the health literacy of the person affected. The term “health literacy” is extremely important in rehabilitation. Health literacy enables people to find out about health and disease so that they can understand and process the information, which enables them to adjust their behaviour accordingly.

It is important that you are well informed about your own state of health so that you can make appropriate decisions. To achieve this, we will provide you with systematic advice and guidance on caring for yourself so that you can take over responsibility for yourself and become more independent. If you require support for everyday activities, it is important that you are able to give specific instructions to your carers and to know what to watch out for.

As a patient, you must be able to take responsibility and play an active part in the treatment process, in rehabilitation and in your own health care. Creating awareness by providing training and instructions and imparting knowledge will make a decisive contribution towards your acceptance of therapy, treatment and ultimately the spinal cord injury.

Relatives

The spinal cord injury will not only cause complete upheaval in your life, but will affect your relatives just as much. They will also be confronted by a new reality and a major change in their lives.

A lack of knowledge is unsettling. Your relatives also need to acquire new knowledge so that you and they can remain in good health in the long term, particularly if you need to rely on your family for support on a day-to-day basis.

Rehabilitation = Teamwork

A whole team of specialists from various disciplines will work together on your rehabilitation; you as a person will be central to this. Each discipline has its own specific tasks. Cooperation within the whole team allows successful rehabilitation, and you will need to play the biggest part in this. Make the most of the time that you spend in the clinic; your interprofessional rehabilitation team will support you with all their expertise – but they will not succeed without your cooperation!

What form does comprehensive rehabilitation actually take?

Each person with a spinal cord injury must find his or her own way in rehabilitation. This will depend on the extent of the spinal cord injury and on the progress you make. The rate at which you progress depends on your starting point. This means that a person with high-level tetraplegia has different goals to someone with paraplegia. Recovery is not linear: progress alternates with standstills or setbacks, which may be discouraging at times. Working together with you, we will always endeavour to make the most of your capabilities.

The different stages of rehabilitation

There are various main points of focus during rehabilitation, which can be summarised in four stages. There is no set time for the different rehabilitation phases and they flow into one another with the aim of achieving as much independence as possible. The goals are continuously adapted to what is possible for you and what you require.

Acute phase

The acute phase covers the period of initial treatment after the spinal cord injury has occurred; you may spend some time in the Intensive Care Unit. The most important aspect there is to make the correct diagnosis in order to treat your injury and to stabilise your vital functions such as circulation and breathing. This also entails ensuring that you are emptying your bladder and bowel properly, which creates the optimum basis for further rehabilitation.

Development phase

You will become more mobile and, as a result, more independent in your everyday activities. You will learn how to handle your paralysed body and increasingly take on responsibility for certain areas, such as bladder and bowel management, nutrition and skin checks. You will be informed about the medication you need and will be involved in adjusting your medication. At this stage, preparations are already being made for you to be discharged and to return home to your social, and possibly your professional, environment. If you would like to drive again, we will explore your options during this phase. Depending on what is required, your relatives will receive training, and you may be able to spend initial weekends back at home provided the necessary preconditions have been met.

Phase model for a person with a spinal cord injury in initial rehabilitation

Consolidation phase

In accordance with the extent of your paralysis, you will assume complete responsibility with regard to your discharge. Nurses and therapists will increasingly support you in your self-determination. Depending on your circumstances, the intensity of your therapy may decrease. You will design your activities increasingly independently and consolidate your skills. If complications or new problems arise, our competent rehabilitation team will be on hand at all times to offer guidance. Your environment will be adapted to meet your needs.

Discharge phase

You can live independently in accordance with the extent of your paralysis and have become a specialist in managing your spinal cord injury. In-patient treatment is completed during this phase. Final preparations for discharge are put into place in all the relevant specialist areas. You are aware of all the important contacts. Where necessary, outpatient therapy sessions have been organised, and your GP has been informed.

The length of stay will vary depending on the diagnosis and the preconditions. Generally speaking, initial rehabilitation takes four to six months for people with paraplegia and eight to twelve months for people with tetraplegia.

Life after your stay in the clinic

Try and see your stay in the clinic as a kind of laboratory situation. The big challenge is to take the techniques that you learn in the clinic and apply them to your everyday life outside the clinic.

While your home can be adapted in order to make your daily routine as simple as possible, you do not spend your whole life at home. You will inevitably encounter obstacles outside your home where you will have to improvise. The fewer mobility aids you need on a daily basis, the easier it will be to get out and about, to stay overnight in other places, and to travel.

At the start of your rehabilitation, you may be happy if all your routines are identical, such as always transferring from the bed to your wheelchair on the same side or supporting yourself against the adjustable head section of the bed when sitting up. You will, however, discover that day-to-day conditions change constantly. By trying to remain as non-specific as possible when you do your activities, to gain as much experience as possible, and to develop alternative techniques, you will make things easier when you have to face new situations in your everyday life. We can offer you the possibility of practising, training and improving. Set yourself targets and let us know what they are.