Effects Of Multiple Sclerosis

When talking with your children about MS symptoms, it is often useful to describe and demonstrate the symptoms in a fairly concrete way that they can more easily understand. You might, for instance, describe MS fatigue as the feeling that they would get if they tried to walk around with weights on their arms and legs. Vision problems might be described as feeling like one is looking through a mesh screen all the time or looking at a movie screen with a big hole in the middle. You might convey the feeling of spasticity by letting your child try walking with an elastic bandage wound around each leg. It is important to remember that children will have the greatest difficulty understanding symptoms that they cannot see.

Effects Of Multiple Sclerosis

Similarly, it is often useful to let children experiment with assistive devices (e.g., canes, crutches, a motorized scooter, or a wheelchair). They will feel less intimidated by equipment that they have handled and used themselves.
 
Educational sessions for children, conducted by members of the MS healthcare team, may also be available at MS centers. These meetings provide children with age-appropriate information about the disease, an opportunity to become familiar with the treatment setting and healthcare personnel, and an opportunity to ask questions that they may be hesitant to ask their parents.

In spite of having been told about MS by their parents, some children do not ask many questions or seem very interested in talking about it. It may not be easy to know if your child has concerns about MS because many children keep their worries to themselves. Sometimes children do not know how to ask their questions; sometimes they hesitate to ask questions for fear of upsetting their parents and possibly making the MS worse. 

Some children who hesitate to talk about their concerns may express them in their behavior. For example, children who are worried about a parent's recent hospitalization or physical worsening may have difficulty sleeping, become very clingy, or complain of physical symptoms in order to stay home from school. Others may act out in school or lose interest in their schoolwork.
 
Although there is certainly no need to talk incessantly about MS, it is occasionally useful to ask your child if he or she has any questions or concerns. This is particularly important any time there are obvious changes in your situation, such as going into the hospital for treatment, starting to inject yourself with one of the disease-modifying medications, starting to use an ambulatory aid, or thinking about leaving your job. Raising these issues with your children reassures them that they can say what is on their mind and gives them the vocabulary they might need to ask their questions.

Coping With The Physical Consequences Of MS
 
RELAPSING OR EPISODIC MS, which is characterized by exacerbations or changes over time, may be particularly confusing and stressful for children because of frequent transitions between stable periods, with low level or no symptoms, and periods of symptom flare-up. However, even those parents who have a more steadily progressive course of MS can experience changes in their symptoms from one day to the next. The unpredictability of symptoms from day to day often makes it difficult to plan activities and carry them out in a consistent manner.
 
Because families must somehow learn to deal with the realities of the illness as they are, the recommended strategy is to try to take each day as it comes. Make plans with your children, explaining that if you are unable to carry out those plans as originally scheduled, you will give them a rain check. Be sure to let them know that you share their disappointment and frustration. In addition, try to give them some explanation of the problem you are having. Although children can understand the concept of "having a bad day," it is probably best to let them know in a straightforward way what is causing you discomfort and interfering with the planned activity.
 
Enlisting the help of trusted family members and friends to participate in recreational and other physical activities with your children can be very helpful. Although parents often assume that other people are too busy to help, many friends and family say they have wanted to provide assistance in some way but believed their offers of help would be refused or interpreted as intrusive.

When asking for help from others, your request is most likely to be fulfilled if you are specific and clear about your needs. You might, for example, ask a close friend or relative to accompany your daughter on a Girl Scout overnight trip or drive your son to his music lesson once a week. Ideally, it is helpful to have several individuals who can provide support to you and your family so that no one person becomes overwhelmed.
 

If you begin to find yourself depending on your children for help with personal care activities such as getting dressed or going to the bathroom, talk with your doctor, nurse, or other healthcare provider to make sure you have examined and exhausted all other possible resources. To find out more, you can check out Effects Of Multiple Sclerosis.