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Multiple Sclerosis: Getting and Managing
Health Care Needs

If you are caregiving to a friend or relative with Multiple Sclerosis, you already know how difficult it can be to manage that care. Services once covered by health care insurance no longer are available. Managed care and increased benefit cutbacks in both private and federal health care agencies have made getting quality care difficult. It is not just the person with Multiple Sclerosis who is affected by this. Many others dealing with various diseases and disabilities have found trying to obtain adequate care, a very frustrating concern. As caregivers, we see the responsibility to ensure quality care is provided to our loved one falling more and more of on our shoulders.

We are learning through trial and error that what you see is not always what you get in relation to satisfying health care needs. We have also been “managing” the care of our family member, or significant other, for a long time. We are experts. We have learned it behooves us to be proactive in the health care planning, implementation and delivery of that care. It is not always easy to know just where to begin or how to know if what we are doing is the right thing to do.

In order to begin, it is beneficial to learn all you can about the disease and how it’s progression can affect your loved one’s ability to function independently. This information can be found anywhere. It is best to start with the primary health care provider who is following the person with MS. They can help you with a prognosis for the future and perhaps recommend resources available in your community to assist you. Other resources include the Internet, public library, care consultant specialist and magazines such as Today’s Caregiver Magazine that target caregivers and their specific needs.

Next you need to become aware of the specific needs of the person you care for. These needs should encompass every aspect of daily living and not just those specific to the disease.

Here are some of the problem areas caregivers need to consider when planning care. In doing this it is helpful to consider each area listed and keep a record of the personal needs of your loved one. This will help you to track of the progress in rehabilitation or help to show what problems need to be addressed.

General Health

It is a good idea to make sure that they have a physical exam every year. This should include routine screening exams for cancer. For women this would include mammograms, and pap smears and in men prostrate and rectal exam. Dealing with problems that MS can bring will be easier if general well being is maintained. Evaluation of neuromuscular and musculoskeletal function should also be a part of the yearly exam.

At this time it is also a good idea to have a checklist that you can show the doctor that documents the different levels of functioning and how they have improved or declined since the last check up.

Neuromuscular checklist includes: complaints of pain and spasticity.

Musculoskeletal function should include monitoring impairment in range of motion to all extremities, including the joints.

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