Set The Stage

Every lifestyle, whether it is jester, warrior, magician, or king, has real and implied costs. Purchasing the juggling cubes, stabling the warhorse, tuning the hourglass, or furnishing that summer castle are generally considered the direct costs of a chosen lifestyle; missing all those other bookings that one just can't get the time to perform could be called lost opportunities or indirect costs. Economists, who probably don't fit any of the four preceding lifestyles, like to calculate the direct and indirect costs to determine the effects of a lifestyle on a person's finances or to estimate how much funding one might need to conduct a particular lifestyle successfully.

Living with multiple sclerosis (MS), or any chronic health condition, is a lifestyle with direct and indirect costs. But before one enumerates either of the two cost categories, it is essential to make an important distinction. Life has usual and customary costs that every "style" has to address. Money for food, clothing, and shelter challenge the jester, warrior, magician, and king alike. Now, it is certain that "style" might dictate differences in the amount of costs, but one can assume that our four lifestyles have at least these costs in common. Living with MS is no different. Food, clothing, and shelter costs must be addressed adequately to provide a secure, if not comfortable, style in which one wishes to live. Living with MS presents some special or "incremental" costs that might be said to go beyond the basic life costs. For the following discussion, we'll label the MS costs as incremental in that these costs are often specific to the presence of MS in a person's life.

Expenses that are incremental costs of MS often include, but may not be limited to:

• Physician visits

• Hospitalizations

• Outpatient clinic visits other than to the doctor's office


• Over-the-counter medications

• Medical supplies

• Therapeutic visits or sessions, e.g., PT, OT, speech, etc.

• Equipment (e.g., mobility aids, assistive technology for health or work)

• Home nursing care visits

• Home modifications

• vehicle modifications

• Aide or attendant services/home care

• Household assistance (e.g., housework or yard work)

• Copayments for medical visits or medications it should be noted that not all direct costs are those paid by you or your spouse or family, but they might also be paid by insurance or other such programs. It is important to identify all costs when they happen and how often they happen regardless of who pays for them. This record will be handy for organizing a plan to meet such costs.

Indirect costs primarily are "missed opportunity" costs. The most obvious "missed opportunity" cost is lost wages due to changes in employment status. These losses might be total or partial, as some people with MS can work, but perhaps they are not working at a previous level or they do not receive advancements that might have occurred had their job performance not been compromised by aspects of their MS condition. Additionally, lost opportunities may represent financial changes for other family members, such as a spouse who has to alter his or her employment pattern in order to provide caregiver assistance at home, or children who have to change school placements or selections due to changes in household income that make tuition payments impossible. "Change of plans" costs may be subtle or even vague, but one should be watchful of such changes because they are real costs.

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