Multiple Sclerosis: How to Keep the Family Rhythm Going

Unfortunately, multiple sclerosis (MS) can disrupt your family’s rhythm just as having weekend visitors changes the way you do things. But since this visitor won’t be going home, your challenge is figuring out how to fit MS into your life with as little disruption as possible.
All families have their own rhythm. You may not hear the music playing in the background, but over time, each family establishes patterns, routines, and schedules for daily life. This rhythm is part of what provides the feeling of safety and security that people look for in family life.
MS can be greedy. From time to time, he can take advantage of all the resources of the family – money, energy and time are the most obvious. This is why it is important to give MS some space in your life without giving it more than it needs.
Each family member is in a different place in his life, and each one needs a share in the family’s resources. If MS depletes too much of any of these resources, the result is a disabled family.

Dealing with direct and indirect costs of MS
The direct and indirect costs of multiple sclerosis in the United States are approximately $60,000 per person per year (at an annual cost of $24 billion!). About half of this is related specifically to healthcare (medications, doctor visits, hospitalization, etc.). The rest is attributable to lost wages, unpaid caregiving activities and other factors. Fortunately, most people with MS have health insurance coverage. However, out-of-pocket expenses can be high.
Due to the high cost of MS, we urge families to consult a financial planner early. Although you can never predict how your MS will progress or what expenses will be included, it is a safe bet that you will encounter expenses that you never calculated. The planner can help you anticipate potential expenses and identify strategies to meet those expenses if they arise.
One reason financial planning is so important is that MS isn’t the only hungry mouth waiting for food. Summer camp, orthodontics, vacations, college expenses, and retirement always await their fair share of fate. Unfortunately, these typical life expenses don’t go away just because MS appears. The goal is to make sure MS doesn’t take in more cake than necessary.

Multiple sclerosis and family priorities
One of the things we hear a lot from families is, “MS has really helped us prioritize.” For these families, MS has made them stop and think about the things in life that are most important to them and what they must do to achieve those things. Obviously the priorities will be different for each family, but the process is the same.
For example, a family might decide that spending quality time with the family is a top priority. Given that the father suffers from a lot of MS fatigue, they need to know how to take this into account when planning joint activities. Maybe they decided that dinner would be 30 minutes later every day to give Dad a chance to take a nap when he got home from work.
Or maybe they decide that the kids can take over the mowing the lawn so Dad can use that time to rest at the afternoon soccer game (and Dad agrees to take his scooter to the field so he doesn’t get too tired for the team to cheer).
The examples are endless, but the point is that the family needs to prioritize and then figure out how to make it happen. Other priorities might include making family trips available, increasing monthly savings, or having more company at home so mom can stay in touch with all her friends. The goal is to ensure that everyone’s needs are balanced.

MS Problem Solving: Many Heads Are Better Than One
Living with MS requires creativity and flexibility. Every new challenge that comes along requires a response; Otherwise MS threatens to run the display. Your best strategy for coping with the challenges of MS is for you and your family to get your heads together to come up with a plan. This strategy provides more mental strength to deal with the problem, and it helps make sure that everyone buys the solution.
If mom, for example, has balance problems, she and her family can think of ways to deal with it — perhaps by rearranging the furniture to make the house more convenient for her, helping her choose a stylish new scooter, or considering moving into a home from one floor.
Or, if the co-pay on their medication increases, the family can work together to figure out the source of those extra dollars each month. One advantage of this type of shared approach to problem solving is that everyone feels some ownership of the process.