LIVING WITH MULTIPLE SCLEROSIS

For each patient, multiple sclerosis is a constant struggle. The changes that MS brings into the patient’s life need special adaptation.
/static/themes-v3/default/images/default/info/maladie/intro.jpg?1516194360

The different symptoms and different disabilities that are developed will interfere with the daily life, at work and with the family. Some measures can be taken to facilitate the patient’s daily life.
At the professional level, outbreaks due to the disease can cause absenteeism for several weeks, which can be a problem with the employer. The work-home distances and layout of the workstation are not always adapted to the physical conditions of patients.

On an everyday basis, a lot of patients are not affected by their disease. In this case they are advised to have a regular physical activity. As the handicap grows it is important to learn to adapt. The patient can also enjoy amenities in his everyday environment, like at home, he can improve the accessibility of different areas of the house. The occupational therapist is a specialist who will, with the patient, define his specific needs and the necessary transformations. Technical aids such as a hospital bed, a shower seat and hand grips can then be installed. Institutional help is also available to adapt the car and facilitate the movement of the patient. 

First, after learning his diagnosis, the patient must pass a test for a driving license. This visit is mandatory because it aims to evaluate the ability of the patient to drive, with the only concern of his safety. The medical examination is done only by an authorized physician. To find out where it should be done, the patient can contact the NHS.
The visit is mainly based on a psychomotor test. Typically this procedure is a formality and the words "Fit" validate the license for a period ranging from 1 to 5 years. But over time, some MS symptoms (optic neuritis, sensory and motor disorders) may affect people's ability to drive.

However, this is not inevitable and vehicle adaptations are possible to ensure the patient's autonomy and safety. For example, a possible adaptation is the connection between the brake pedal and a device located near the steering wheel. Electronic modules allow to overcome the losses of sensitivity sometimes felt by the patient. In addition, it is also possible to install a ramp to the rear of the car for people in wheelchairs or to install swivel chairs to facilitate getting out of the car.

Finally, contrary to conventional knowledge, pregnancy is possible. 30 years ago it was forbidden for women with MS to have children. Today, this has changed, and we know that pregnancy has no impact on the risk of progression of the disease. There is no particular risk during pregnancy either.
 

Multiple Sclerosis and the daily organization

Multiple sclerosis is a chronic disease that requires the patient to undergo treatment every day. With the evolution of the disease, patients sometimes have less mobility and are more affected by symptoms such as pain and fatigue. To be well organized every day and know how to delegate are crucial things the patient needs to do to feel better and, by extension, the relatives will be reassured to see the patient rest.

Health professionals such as nurses and carers are there to help patients in their everyday life. Indeed, the carer helps the patients if they need to bathe or dress. The nurse listens to patients and makes sure that the patient takes his treatment (injections) or helps to do the blood test and other medical tests.

At times, multiple sclerosis takes all the energy of the patient and leaves him not being able to do household chores and other activities of daily life.

The support of the entourage is then important and they have a role of relay and essential support.
But if the spouse can’t help at home or with the children and the daily tasks; or if the patient is not able to delegate these tasks, it is possible and advised to use external help.
 

Would you like to know more about this condition?

Join 145 000 patients registered on our platform, get information on your condition
or on that of your family member, and discuss it with the community

Join

It’s free and anonymous