Planning Around Your MS: What Might the Future Bring?

When you have multiple sclerosis (MS), you can’t predict the future, but you can try to anticipate some of the changes or challenges that may crop up down the road. And anticipating these changes can help you stay in control of your life.

With or without MS, life is full of changes — some more expected than others. Marriage, starting a family, moving to take a new job, caring for elderly parents, getting a divorce, and going back to school for an advanced degree are just a handful of those changes that can occur. It’s important to take these kinds of changes into account and think about how your MS fits into the picture.

For example, are there any changes you would like to make sooner rather than later — such as returning to school or having a child — because of concerns about your MS progressing? Or does your partner need to alter his or her career plans based on the possibility that you may not be able to remain in the workforce as long as you planned?

MS future planning: Employment and financial changes

Your financial situation can change in either direction for many reasons. Windfalls happen and so do unexpected problems. For example, your incoming funds could get a hefty boost from Aunt Bertha’s will or from the piece of property your parents left to you and your sibs. Or, you may pay off the car loan, send in your last mortgage check, or finally get that last kid through college.

Any of these would significantly up your disposable income. Of course, losing child support or alimony, buying a new car or house, or getting laid off could significantly zap your disposable income.

Unanticipated expenses are obviously the real challenge. The best strategy, then, is to assume that you’ll have some of these unexpected expenses, and then you can try to build in enough give in your budget to absorb them. Here are some expenses you can plan for (even if they never actually happen):

  • Home modifications to stay as active as you want to be: These modifications, such as widening doorways for wheelchair access or building a ramp, can be costly, but they’re worth their weight in gold.

    Remember, however, that many state vocational rehabilitation services will cover the cost of home modifications that make it possible for you to remain in the workforce, so be sure to call the National MS Society (800-FIGHT-MS or 800-344-4867) for the names and numbers of people to contact in your state.

  • Medical treatments or wellness interventions that aren’t covered by your insurance plan: As you can imagine, these out-of-pocket expenses can also pack a wallop. Your insurance company, for example, may deny coverage for your physical therapy visits or the massages that are so helpful for your spasticity (stiffness).

    Or, you may want to join a gym or exercise class to help reduce your fatigue or build your endurance. Even though these costs are related to your MS, they, too, would likely come from your own pocket.

Changes in your employment situation may be planned or unplanned, positive or negative — but they all need to be taken into account when you plan for the future. If you or a family member retire from the workforce or cut down on your hours, your income inevitably goes down. On the other hand, a promotion for you or your partner can add a big chunk to the plus column.

Also, if your MS progresses to the point that you’re unable to work — even with job accommodations — your disability retirement income is likely to be lower than your current salary. Private disability insurance generally only covers a portion of your current income.

Social Security Disability Insurance (SSDI) payments are also significantly lower than your current salary. Anticipating the possibility of this kind of change in your finances can help you plan for it more effectively.

MS future planning: Changes in your family

In addition to trying to anticipate changes within your immediate family — such as having children and saving for their college education — it’s important to think about whether your extended family is available to help you in the future. In the old days, people could pretty much count on assistance from family members if the need arose because family members usually lived close together and more women stayed home to raise their children.

Today, families are more spread out, with many couples relying on two incomes just to get by. And their own life changes — new babies, retirement, illness, returning to the workforce — may make it impossible for relatives to assist you with your life changes. This means that any help you may need down the road may have to be hired from the community, which obviously would be an added expense.

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