Empowering people affected by MS to live their best lives

An Unpredictable Disease

Your experience with multiple sclerosis may depend on factors including:

Age
Time since diagnosis
Other health conditions (comorbidities)you have
Medications and treatments you have received
Lifestyle

The severity and types of symptoms you have will vary from time to time and will be different from others living with MS.An early diagnosis and early treatment with a DMT is considered the best approach for optimal management of MS. Be proactive and your own best advocate for your health. Learn about the disease, track your symptoms and keep a list of questions for your doctor.

My Shifting MS Symptoms

Life-Altering Changes

The course of your disease will be unlike anybody else’s. Your MS symptoms may come and go. You may have relapses. The course of the disease may progress and result in functional loss and increasing disability.Thanks to medical advances and disease-modifying therapies (DMTs), many people with MS experience fewer relapses and/or delayed disease progression. In some people, however, the disease may advance. This may result in mobility and cognitive issues that affect independence. It may change the tasks they do at home. Or may lead them to switch jobs, decrease their workload or leave the workforce, among other adjustments.It is natural for you to feel grief, frustration, fear and anxiety as your situation changes and you face uncertainty. Talking openly about these feelings and seeking additional support may help in dealing with these emotions.

Ask an MS Expert: How Aging Affects MS

Making Adjustments

Seeing MS From Both Sides

A family doctor who lives with MS shares her strategies for dealing with the disease.

Coming Up With a Plan

The course of MS can change quickly and unexpectedly. If your MS progresses, think ahead, ask questions, draft a care plan and talk with your loved ones.Variables which may affect your care plan include:

Level of disability
Family situation
Finances
Healthcare coverage
Additional needs
Services available in your area

For more progressive MS, living arrangement options can vary greatly. You may be able to stay at home if you have help managing daily activities and make your home safer and more accessible with recommendations from an occupational therapist. An adult day program or online support group may keep you from feeling isolated. But if it is no longer feasible for you to live at home, consider the various living options available. Usually, this becomes necessary when you:

Are too fatigued to prepare meals, maintain your home or care for yourself
Have difficulty taking medications
Have balance issues or poor vision
Have new safety concerns
Need more social interaction

Often, discussions about care happen when:

Family members realize that they need help to care for the person living with MS
Safety and independence concerns call for a more supportive housing alternative
Around-the-clock advanced care becomes necessary

Conversations are easiest if everyone is honest, feels heard and tries to reach consensus.

Level of disability
Family situation
Finances
Healthcare coverage
Additional needs
Services available in your area

Are too fatigued to prepare meals, maintain your home or care for yourself
Have difficulty taking medications
Have balance issues or poor vision
Have new safety concerns
Need more social interaction

Often, discussions about care happen when:

Family members realize that they need help to care for the person living with MS
Safety and independence concerns call for a more supportive housing alternative
Around-the-clock advanced care becomes necessary

Conversations are easiest if everyone is honest, feels heard and tries to reach consensus.

MS Through the Ages

People of different ages describe their experience with multiple sclerosis.

Exploring Options

Keep in mind that your MS will likely change over time. If your disability or clinical challenges increase, the following questions will help you determine if making home modifications or moving to a residential care facility would give you the best quality of life:

Are care and assistance available for you to manage symptoms, function and avoid complications?
Is your environment safe?
Are facilities or your home accessible?
Do you need mobility equipment?
Do you have opportunities to socialize and pursue your interests?

Also, identify specific needs, such as help handling your personal care, getting in and out of bed or preparing meals. Check if you have long-term care insurance or find out if you qualify for government programs due to your disability, income or veteran status.Supportive housing alternatives include:

Assisted living - These residential facilities offer flexible personal care services, 24-hour assistance, social activities and health and home-making services. They blend privacy and socialization, and you are able to coordinate the care you need.
Adult foster homes - They provide support and services if you are unable to live independently and need help with daily activities. They offer personal assistance, meals, supervision and medication management. They can also help you make medical appointments and arrange transportation.
Supportive housing - They combine independent apartments with some services, such as activities, a social worker or help with meals. Sometimes renters choose to share an aide, which reduces costs.

If your function declines significantly or you have challenging clinical problems, you might consider a skilled nursing care facility. Issues such as incontinence, malnutrition, respiratory problems and significant cognitive loss may require specialized care 24 hours a day.Medicare pays for a limited number of days of nursing home care, usually after a hospitalization, but not for ongoing care. Medicaid covers nursing home costs only for those who have limited assets or have run out of resources. Some people with MS pay for nursing homes themselves until they can no longer cover it. Then Medicaid takes over.

Are care and assistance available for you to manage symptoms, function and avoid complications?
Is your environment safe?
Are facilities or your home accessible?
Do you need mobility equipment?
Do you have opportunities to socialize and pursue your interests?

Assisted living - These residential facilities offer flexible personal care services, 24-hour assistance, social activities and health and home-making services. They blend privacy and socialization, and you are able to coordinate the care you need.
Adult foster homes - They provide support and services if you are unable to live independently and need help with daily activities. They offer personal assistance, meals, supervision and medication management. They can also help you make medical appointments and arrange transportation.
Supportive housing - They combine independent apartments with some services, such as activities, a social worker or help with meals. Sometimes renters choose to share an aide, which reduces costs.

MS Over Time

An Unpredictable Disease

Life-Altering Changes

Making Adjustments

Coming Up With a Plan

Exploring Options