MS and Life Planning
Ann Crickmer, MSW
Even with the administration of immunosupressant drugs, we cannot know what the course of MS progression will be for any particular individual. Before the ABCR drugs, 50-80% of people with MS had to depend on Social Security Disability Income because they were unable to continue working 10 years after onset of the disease. In the face of uncertain future health, it certainly makes sense to include the fact of MS in your life plans, although the following suggestions are good life planning steps for anyone to implement.
Grieving over the loss of the exact future you thought you would have is inevitable before you can implement the practical steps below. Families and friends must also grieve the changes your chronic disease means for their future.
Use the MS Symptom Checklists to document the history of all of your symptoms that could have been MS. They can be found at the link above, or can be obtained by contacting the Multiple Sclerosis Association of King County (msakc@msakc.org) .This will enable your neurologist to more accurately monitor the progression of your MS, initiate supplemental treatment (to the ABCRs) in a timely manner if you are still experiencing inflammatory activity, and give you baseline documentation of the extent of the disease.
Have your home evaluated for accessibility with an eye towards modification that can be made both to conserve energy levels, and ensure safety. Call the MSA for an evaluation.
Work accommodations - make changes in your work setting or routines to help you maintain high productivity on your job.
Ask your neurologist for a referral for a physical therapy evaluation to determine what type of regular exercise program would be best for you. This is not optional for those with MS: if you want to maintain your quality of life you must make it your second priority (after taking an ABCR medication) to take a pro-active approach to managing fatigue and an organically-caused reduced ability to handle stress due to MS. Weight training will also increase strength and endurance, natural endorphins released by the brain can help to manage MS pain, and you already know the benefits of aerobic training and a low-fat diet.
Are you exercising your brain? There is now strong evidence that intellectual stimulation can significantly increase the number of brain cells and build new connections between neurons. Learning by doing is best because it uses all the senses. Creative endeavors, humor and puzzles are good. The verbal and non-verbal processing of feelings together with someone with an undamaged right brain can also lead to the growth of new structure in the brain. This enables better regulation of mood. Verbally labeling feelings with family, friends and a counselor is a very good way to exercise the brain.
- Develop a life aside from work. If you were the type of person whose occupational identity defines who you are, it would make sense to spend time and energy now to develop other interests and aspects of your personality. Explore the benefits of a lifestyle which involves being in preference to doing. Many people with MS have learned that a slower, more reflective pace of life provides a superior quality of life. Your priorities may change: for example you may decide to travel now in the event that you might have difficulty walking long distances in the future. Time with family and hobbies may turn out to be more rewarding than a higher paycheck.
- Have a plan in place for the next exacerbation when you might be too ill to make arrangements for yourself.
Designate a family member or friend to call your doctor, arrange for insurance paperwork, and transportation if you need to go to the hospital.
Do you have a backup plan to care for children and pets?
Who would make sure the bills are paid if you are out of commission for a few weeks or months?
Are your records in order to see you through a period of disability?
MS can cause organic cognitive disability. Have you chosen someone you trust to make medical and financial decisions for you if you are ever unable to adequately provide or arrange for your own nutrition, health or housing needs, or personal safety? Have you signed a Durable Power Of Attorney to make sure your choice is legally viable? This can be written to take effect immediately or at some time in the future, if needed. This can incorporate the patient's "living will" or "health care directive". A witness, or notarization is recommended.
Have you designated someone you trust to respect your values and best interests to be your guardian in the (rare, but not unknown) event that you ever need one? In this case, a court must rule on the need for, and assignment of a guardian. People whose family member has advanced MS should make sure that the physician has authorized CPR/No-CPR choices in writing. If the MS patient lives in an adult family home the physician's signature is not required.
Have you chosen a guardian for your children should you ever become unable to care for them? Are all your preferences in writing?
These arrangements must all be signed when you are clearly able to make your own decisions, before an exacerbation. It will help to have a witness attest to competency at this time.
This is very difficult: you will need to consider the potential emotional regulation, cognitive, physical strength and fatigue implications of your diagnosis in a decision to care for (more) children. Particularly, the increased risk of an exacerbation following delivery suggests that you develop backup options for 24 hour a day nurturing so as not to put at risk the bonding experience essential for completion of the development of your infant's brain. These are the most important months of one's entire life. Can you budget for a nanny, either for a few months or years, as relatives are not generally available for 24 hour a day care? Another consideration is that college expenses often come at a stage of MS that corresponds with reduced income.
Are you active in a spiritual community? Many people find this to be a vital part of living with a chronic condition that affects every aspect of their lives.
It can be very helpful to work with an MS counselor at the time of a new diagnosis to help understand and deal with changes in your personality and relationships, work accommodations, realigning your life priorities, or whether to have a (or another) child. It is also good to have an MS counselor facilitate a group discussion about the disease and its implications with your family and friends. A lot of misunderstanding can be effectively dealt with in this type of a meeting. Individual counseling is also recommended for family members who want to know how they can help, or to talk about how MS affects their lives. Please feel free to call us at 206-633-2606 to arrange an appointment. All fees are set on a sliding scale and can be billed to the NMSS for up to ten visits for those with low income or health insurance.
Chronic illness has the potential for being financially devastating:
- Good health insurance is a necessity for anyone with a chronic disease. Policies which cover medications without a cap, and have a low deductible and co-pay, are essential. Large companies generally offer better health benefits than do small firms. If your employer does not offer health insurance coverage, check on group coverage through professional, fraternal, academic, or other affiliations. If you are very low income you may qualify for Washington State Basic Health.
There will be periods when you are unable to work, and will need to have sick leave to continue your income stream or budget for this event if you are self-employed.
Check to see if you are eligible for long-term care insurance. A number of people with MS will eventually need in-home caregivers, and some will need long-term care outside the home.
Since you would be eligible for Medicare two years after your initial SSDI application, you may want to check out your employers' COBRA rules to span that coverage gap
Reduce debt and increase savings. Do you really need the larger house with stairs, which you may have difficulty climbing in the future? Would a "pre-owned" car meet your transportation needs as well as a new SUV? You may have a different perspective on private school for the children now. Maybe this is the time to make out that monthly budget you've always said you would. It would make a lot of sense to live today on the reduced income you could expect if you were unable to work and dependent on disability income in the future.
Someday, if you need SSDI, the amount of your benefit will be based on a formula which weights your most recent years' income. If you experienced MS symptoms for years before you were diagnosed and started ABCR treatment, you are at higher risk for reduction of income.
Consult a certified financial planner to develop a contingency plan should you become unable to work. A lawyer who is familiar with Medicaid-related issues can help to protect eligibility for state-supported services. Contact the MSA for a referral in King County.
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References include recent presentations by Patricia Coyle, MD, George Kraft, MD, and Richard Rudic, MD; recent articles by Lawrence Jacobs, MD in Neurology, Stephen Waxman, MD in Archives of Neurology, Trapp, et al. in The Neuroscientist and New England Journal of Medicine, Jack Simon, MD in Journal of Neuroimmunology and Neurology and R. Rudick, MD in Neurology, amongst others. The definitions of parts of the brain came from "A Glossary for Science" from The Humanizing Brain by James B. Ashbrook and Carol Rausch Albright, 1997.