The National Institute of Neurological Disorders and Stroke defines Multiple Sclerosis as “an unpredictable disease of the central nervous system. Multiple Sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and the other parts of the body is disrupted.”  Uncertainty and the sometimes early age of onset complicate care decisions and may leave the person with MS and his or her family with so many questions they hardly know where to begin.  But with a proactive approach and the right kind of help, they can prepare for the changes ahead.

According to Medical News Today, people with MS generally experience one of four disease courses: relapsing-remitting (accounts for about 80%), primary-progressive (15%), secondary-progressive, or progressive-relapsing (the least common).  The National Multiple Sclerosis Society says that depending on the type, symptoms can come and go, come and stay, or progress more steadily over time.  Symptoms generally begin to present between ages 20 and 40, according to the National Institutes of Health, and women are twice as likely as men to be affected by MS.  Depending on the severity of symptoms, which in the worst case can render a person unable to write, speak, or walk, patients may worry about where they will live, how they will pay for care, and maybe even whether they will have to transition to a nursing or assisted living facility at an early age.  All these concerns may contribute to psychological conditions such as depression, making it even harder for the person to consider available options and develop a comprehensive plan that suits their needs.  The support offered from a seasoned care coordinator can be the key to successfully coping with the day to day effects of the disease process as well as planning ahead for future care needs.

Care coordination, such as is offered to ELET’s Life Care Planning clients, is a method of managing care for a client across multiple care providers, ensuring that the person with MS gets the best possible care and that his or her needs are communicated effectively.  Because physical limitations and the progressive nature of MS are similar to those experienced by much older adults, ELET care coordinators are well prepared to assist clients by finding residential placements, serving as an advocate with care providers and facility staff, attending care plan meetings, and helping to manage challenging family dynamics.  The care coordinator helps the client develop a road map for the future and plan for changing care needs in order to maximize resources and extend independence as long as possible.  In addition, a care coordinator will make recommendations to the MS patient and his or her family regarding home improvements and assistive devices which can maximize independence and safety at home.  Assistive devices may include these listed by as well as new technologies that the care coordinator learns about through his or her professional network:

  • Walking and Mobility: Canes, crutches, walkers, motorized scooters, ankle-foot orthosis, functional electrical stimulation (FES)
  • Hand and Arm Function: Long handled shoehorn, elastic show laces, velcro closures, stocking aid, buttonhook, reachers, card or book holders, fingertip moistener, cups or glasses with lids, plates with lips, signature stamp, large writing utensils, digital recorder, smart pen, smart utensils (helps steady movement).
  • Sitting: Cushions or leg extenders to raise level of seating, lift chairs
  • Home Chores: Rocker knife, utensils with built-up handles (Good Grip utensils), wheeled carts, cooling vests
  • Communication and Computer: Video communication system, speaker phones or phone headsets, voice recognition software
  • Driving: Hand controls for acceleration and breaking, cargo mount for transport of wheelchair or scooter
  • Home Access: Ramps, mechanical lift or elevator, handrails, toilet safety frame, tub transfer bench, shower chair, clamp on tub grab bar, hand held shower hose, bathtub lift, extra high toilets and sinks

A diagnosis of MS may result in a number of significant life transitions, but it isn’t necessary to tackle them alone.  For information about individuals and companies that provide care coordination services, visit the Life Care Planning Law Firms Association or the Aging Life Care Association websites.  Or give us a call at Elder Law of East Tennessee.  Our care coordinators work with our legal staff to ensure the best quality of care and to develop a legal and financial plan that will sustain care needs even as they change over time.