Life with MS

Putting the Pieces in Place: Planning Your Life with MS

By MSF Staff and reviewed by the MSF Advisory Board

“It wasn’t raining when Noah built the ark.”

Advocates of planning are fond of that quote. But when it comes to planning life with MS, there’s not just one disaster to anticipate. The unpredictability of the disease and its many symptoms, as well as the way it affects each person differently, can make planning a challenge. 

Fortunately, many of the safety nets you will strategically place to deal with the unexpected may never be used. They can, however, create peace of mind and allow you to make deliberate and careful choices in less stressful times. Mixing hope and determination with practicality keeps the plan optimistic and also effective.

While it is never too late to begin planning your life with MS, a good time to start is after you have assembled your healthcare team and selected your treatment approach to MS and its symptoms. Those diagnosed with relapsing-remitting MS will have some different planning needs (such as how to cope with an exacerbation) than those who have a progressive form of the disease. Their timetables will vary. But many of the basic elements of the plans remain the same.

Laying the Groundwork

Begin by reviewing your insurance plan, say Margot Russell and Allen C. Bowling, M.D., Ph.D., co-authors of The Everyday Health Guide to Multiple Sclerosis. Russell has MS and Bowling is a renowned MS expert.

Know the details on prescriptions, home healthcare, assisted living, nursing homes, and any other potentially relevant coverage. Educate yourself about Medicaid and Medicare and then decide if you need to make changes in your insurance plan. Policies differ greatly in coverage, so it is important to assess your financial obligations when making choices.

Much of your life plan will hinge on your financial plan. So this area, too, is one to be addressed early on. If you are unable to work because of disability, learn about Social Security Disability Insurance and how to create a successful application so that you can have a source of income. Part of the task is remembering to keep good track of insurance claims, medical records, receipts, prescriptions, and other paperwork pertaining to your condition.

Employment Issues

If you are disabled but still want to work, the Americans with Disabilities Act gives you the right to ask for reasonable work accommodations that will allow you to continue in your present job. Though first choice is usually to stay in the same job, some people with MS shift careers to focus on their strengths as the disease progresses. Consider if now is the time to go back to school or switch jobs, Russell and Bowling say.

You give yourself a big advantage in the workplace when you can adjust to changing symptoms without letting them hurt your job performance, according to Rosalind Joffe, a career coach for women with chronic illnesses.

Do this, she says, by preparing a set of alternative methods for getting your work done. Remember, no task is too small to be taken into consideration. Approach this as you would any project. Set your target goals and map out the steps that will help you achieve them.

Become comfortable with choosing alternatives. This is a critical but often overlooked element of this strategy, she says. Avoid sabotaging your own efforts by ignoring or resisting your backup plans. Instead, focus on fostering your real acceptance of the idea that events are not always predictable, and cultivate your flexibility to take different routes when necessary.

Your Changing Care Needs

Draft a plan that considers the best care options for your current needs, updating it as needs and resources change. Russell and Bowling recommend listing the types of care that may be needed (such as help with hygiene, transportation, and assistive devices) and then investigating the options your community offers.

Though today’s therapies have increased the chances that people with MS will live with little disability for longer times, it is still a good idea to have a plan for receiving additional nursing care – just in case. Many communities offer the following: adult day programs, meals and transportation services, homecare services, and respite care.

Long-term care is designed to meet the physical, social, and emotional needs of people who require 24-hour care and supervision. Options to consider include assisted living facilities and nursing home care. 

While no one wants to think about the worst-case scenarios, planning for them can ensure that your wishes are carried out in the event that you cannot communicate them. Every adult should have a living will (statement of health care wishes) and a health proxy or medical power of attorney (which appoints an agent to make medical decisions for you). 

Be very careful relying on standard forms, says Martin Schenkman, C.P.A., J.D. They may not address your present (and likely future) MS experience. He advises signing at least three originals of each, and giving an agent and trusted friend or family member an original. Also be certain your primary care physician has a copy. If you suffer an exacerbation, it will smooth the way if these documents are already part of your medical records.

Rely on the Experts

Don’t become overwhelmed by all there is to know and do in creating your plan. Just as you developed a healthcare team to help you manage your MS, you can assemble a team of experts to help you create your plan for living with MS. Your planning team may include: a financial planner, an elder law attorney, social workers, and care managers (to link you with community resources and social service systems). Additionally, there are many online resources to assist you in learning about your options. Be sure to ask up front what the costs of services are, and what you can expect to receive.

As an educated healthcare consumer with a great support team, you are ready to develop a plan that will keep your life at its best, no matter what surprises MS might bring. 

Relapse Plan Keeps Wheels in Motion When You Must Idle

Your relapse plan should address how to fulfill work and family responsibilities while you recover. The timeout you will need depends on how severe the relapse is. Decide now how you will handle talking to a boss, asking friends or family members for help, or changing your daily routine, say Margo Russell and Allen Bowling, M.D., Ph.D.

They also suggest having a relapse toolkit on hand full of things to relax and comfort you: good books, any over-the-counter medicines your doctor recommends, a gift certificate for a massage, takeout menus from your favorite restaurants, and a few favorite DVDs. If you have the energy, your plan can incorporate some projects you've been meaning to get to, such as sorting through and organizing photographs, cleaning out a filing cabinet, catching up on correspondence, or learning to play bridge. Turn the negative into a positive by putting the time to good use.

Another item to have ready is a list of providers which may not normally be on your healthcare team. For example, arrange ahead of time to get a referral to a physical therapist in case you're experiencing muscle weakness, walking difficulty, or lack of coordination. For many people with an attack, the combined use of steroids and physical therapy may provide the quickest path for recovery.

Julie Stachowiak, Ph.D., the MS guide at the website, offers this exercise you can do today to line up help when you are relapsing:

Make a list of all your responsibilities, putting one item per line. Assume you will be unable to do them for two weeks. Include items such as cooking dinner, carpooling kids to activities, critical work projects, and volunteer jobs. Don’t forget the little things, like walking the dog. 

For each item you will need to think of a solution. If there is someone you can ask to help out, write his or her name next to the item. Try not to rely on the same people too much; be creative in your sources of help. If an item can wait a few weeks, put “wait” next to it. Your goal is to not have to do any of these tasks while you recover.

When you contact your temporary helpers, explain their role thoroughly. If they agree to assist, write their phone numbers down next to their task. Then, take your list with all the names and phone numbers and put it in a safe place, letting your caregiver, close friends or family members know where it is.

While having your children’s other parent take over your childcare responsibilities is the easiest plan, it is not always possible. If you need to find a caregiver for them, now is the time to make arrangements, document key information the designated caregiver will need, and put in place a mechanism to notify the caregiver if you suffer a relapse. You also need to sign a document authorizing that caregiver to take care of your children and their medical emergencies if you cannot. A guardian appointment under your will is important, but that won’t empower someone to help your children while you are alive.

Mapping Your Financial Future with MS

When financial planning is viewed through the lens of MS, the focus is on your particular experience with the disease. Approaching the task using standard rules of thumb, or even generalizations about MS can be dangerous, according to tax and financial planning expert Martin Schenkman, C.P.A., J.D. His overview of developing a financial plan with MS includes these steps: 

Define Your Goals

What do you wish to accomplish? What type of lifestyle do you want to maintain? Where do you want to live? Do you have loved ones who rely on you financially and that you want to take care of? Every person has their own unique set of goals. Identify and write yours down. 

Determine Your Resources

Once you have determined your goals, you need to assess the resources you’ll have to meet those goals. Prepare a balance sheet (listing of assets and liabilities). List the sources of cash flow that you have.

Estimate Your Needs

For those living with MS, or supporting a loved one with MS, additional costs may have to be estimated within the budget. What do your therapies and other medical needs cost? Are there other special expenses that you might incur? Include costs not associated with MS, such as college for the kids. Plan for a large cost to possibly make your home accessible in the future.

Protect Yourself

Simplify and consolidate your investment accounts, use automatic bill paying for as many bills as possible, have duplicate monthly statements sent to a trusted family member or friend. These steps will make it easier for you to stay in control of your finances if your disease progresses, and they will minimize the difficulties you, and those helping you, will face in the event you suffer an exacerbation. 

Disseminate Emergency Information 

Make a detailed listing of all key personal, financial, and related information and give it to several trusted friends and family members.

Plan Your Investments

Your investment plan must be tailored to your specific situation. If you are in your 30s and might only be able to work another 15 years you may need a more aggressive investment plan to reach your financial goals at an earlier age than most people. If you have a large expense to make your home accessible in light of a recent relapse, you may want more liquidity than you might ordinarily have.

Customize and Sign a Durable Power of Attorney

This document authorizes a named person (agent) to handle financial matters for you. If you have MS, you need to tweak the standard powers to fit your situation. To deal with the possibility of an unexpected relapse, consider a power that is effective immediately (not “springing” into effect only if the agent can prove you’re disabled). If you suffer an exacerbation that makes it difficult for you to address financial and legal matters for a period of weeks, you need to empower someone to address emergencies during that time frame. A more typical power of attorney will protect you if you become fully and totally incapable of handling financial and related matters. 

Sign and Implement a Revocable Living Trust

The best mechanism to protect you during the advance of your MS is a funded revocable living trust. You’ll need to hire an estate planner to implement this. In general, always work with professional advisers to assure that your planning is done correctly and in accordance with your state’s laws. 

Additional educational materials about financial planning with a chronic illness or disability can be found at Schenkman’s website, Also available are templates to organize key information.

 (Last reviewed 8/2011)