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.
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The different symptoms and different disabilities that develop will interfere with daily life, at work and with the family. Some measures can be taken to facilitate the patient’s daily life.
At the professional level, flare-ups 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 disability worsens, it is important to learn to adapt. Patients can also enjoy the amenities in their everyday environment, like at home; they can improve the accessibility of different areas of the house. The occupational therapist is a specialist who will, with the patient, define his/her specific needs and the necessary adaptations that need to be made. 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 of all, after learning his/her diagnosis, the patient must pass a medical examination in order to qualify for a driver’s license. This visit is mandatory because it aims to evaluate the patient’s ability to drive, with their safety being the number one priority. Only an authorized physician can conduct this medical examination. The patient can contact their PCP who must fill out the mandatory Physician’s Statement for Medical Review Form that the patient must send to the Department of Motor Vehicles (DMV) Medical Review Unit (MRU).
The MRU will contact the patient with information, requirements and instructions. The patient will then pass an eye exam at the DMV to be declared "Fit" which validates the license for a period of 4 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 make it possible 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. It was forbidden 30 years ago, for women with MS to have children. Today, this has changed, and we know that pregnancy has no impact on the risk of disease progression. There is no particular risk during pregnancy either.
 

Multiple Sclerosis and daily organization

Multiple sclerosis is a chronic disease that requires the patient to undergo treatment every day. Patients sometimes have less mobility over the course of the disease and are more affected by symptoms such as pain and fatigue. Being well organized every day and knowing 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 carergivers, are there to help patients in their everyday life. Indeed, the caregiver helps the patients if they need to bathe or dress. The nurse listens to patients and makes sure that the patient takes his/her treatment (injections) or helps to do the blood test and other medical tests.

At times, multiple sclerosis saps all the energy from patients and leaves them 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 advisable to use outside help.
 

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