Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
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Sunday, June 5, 2011

Living with MS

Planning for the Future

Although MS is a progressive disease, the rate of progression differs from one person to another. The hallmark of MS is its unpredictability—which means that the doctor can’t predict with any certainty how far or fast a person’s MS is going to progress or what the outcome is likely to be. However, there are some factors that seem to suggest a better or worse prognosis. Taking these factors into account can help you and your family plan more effectively for the future.

Identifying Options

The key message to anyone living with advanced MS is that there is always more that can be done to make the situation better. If your doctor has “nothing more to offer,” it’s time to find another doctor (.pdf) - who will partner with you and other members of the health care team to manage your symptoms and maintain your quality of life. The National MS Society (1-800-344-4867) can recommend MS specialists and other resources in your area.

Learning to Redefine Control and Independence

Sometimes MS symptoms can progress to the point that they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth. When this happens, remember that maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before.

By allowing yourself to do things differently, you gain access to the world of assistive technology (AT)—an array of energy- and labor-saving tools and devices that allow you to stay active and productive. Rehabilitation professionals can help you navigate the world of AT and suggest ways to modify your environment at home and at work to optimize control and independence.

Dealing with Emotional Ups and Downs

Depression and other mood changes are common in MS, and grief is a normal reaction to the changes and losses that can accompany advanced MS. Getting the support you need to deal with these emotional challenges is essential to maintaining your quality of life.

Avoiding Complications

People with more advanced MS are at greater risk for certain kinds of complications. Examples include:

Osteoporosis (loss of bone density related to reduced mobility and weight-bearing exercise, as well as treatment with corticosteroids);

Pressure sores (damage to the skin caused by lack of mobility or long hours in a bed or wheelchair);

Aspiration pneumonia (a problem caused by swallowing problems that allow food particles in to the lungs);

Severe bladder or kidney infections (resulting from chronic urinary dysfunction).

To reduce your risk of complications, schedule regular check-ups with your MS doctor and report any unusual fevers or changes in your symptoms.

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