Multiple Sclerosis Caregiving

When a loved one is diagnosed with MS, you’re bound to worry. What’s in the future? How can you help? Here are some answers.

    1. What is MS? MS is a chronic, often disabling disease that attacks the central nervous system, which is composed of the brain, the spinal cord, and the optic nerves. MS interferes with the transmission of nerve signals.
    1. How serious is it? The majority of people with MS do not become severely disabled and do have normal or near-normal life spans. In some severe cases, however, MS can shorten life.
    1. Are there any typical symptoms? MS affects each person differently, and a wide variety of symptoms is possible. Typical symptoms might include difficulty walking, numbness, visual problems, and bladder and bowel problems. More severe symptoms are difficulty swallowing and paralysis.
    1. Are there any symptoms you can’t see? Yes. Most often people experience “invisible” symptoms: heat sensitivity, changes in cognition such as memory loss, muscle pain, and fatigue. Although you can’t see these symptoms, they can be the ones that are most troublesome for people with MS.
    1. Do the symptoms get worse? The progression of the disease varies from person to person. There are four different diagnoses of MS:
        • Relapsing-remitting MS (RRMS) is the first diagnosis for 85 percent of people with MS. They experience clearly defined attacks followed by partial or complete improvement of symptoms.
        • Secondary progressive MS (SPMS) develops in some people with RRMS. Although periods of remission occur, the symptoms continue to worsen.
        • Primary progressive MS (PPMS) is diagnosed in 15 percent of the MS population. It’s defined by a slow worsening of symptoms.
        • Progressive-relapsing MS is the most rare and is characterized by steadily worsening symptoms with superimposed attacks.
    2. What’s the first course of action? Most relapsing forms of MS respond to disease-modifying medications (DMMs). Doctors recommend treatment as early as possible. In the last few years, the FDA has approved several DMMs that actually halt the progression of the disease in some cases.
    1. Are there any lifestyle changes my loved one should make? Smoking cigarettes has been associated with a worse course in MS, so if your loved one smokes, now is the time to quit. Additional studies have shown that stress may play a role in MS, so it’s important to learn how to manage stress.
    2. Does diet play a role? Studies show that a vitamin D deficiency is associated with increased risk of MS. Many studies have also been done on MS and the role of diet plans, such as the low-fat Swank and McDougall diets. There have been no conclusive findings, but diet does play a role in any overall health strategy — for both the person with MS and for you, the caregiver.
    1. How about exercise? Research has shown that both aerobic and strength-building exercises can be beneficial for people with MS. In addition, stretching exercises, like light yoga, can improve stiffness and improve flexibility and mobility.

 

  1. Where can I find help? Contact your local chapter of the National MS Society, where you’ll find the latest science on treatments and clinical studies, as well as help with practical matters such as health insurance and legal advice. Most important, chapters usually offer support groups, self-help groups, and even exercise classes at low or no cost.

For caregivers and people with MS, establishing a strong network of people with similar issues is a big help, and the National MS Society can help build that network.

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