KEY POINTS:
- The progression of multiple sclerosis (MS) or lack thereof varies by individual.
- MS is typically not the cause of death for someone with the disease.
- MS is an autoimmune disorder. The immune system destroys the fatty covering on nerve cells in the brain, spinal cord, and optic nerve.
- The causes of MS are not fully understood.
Jana, age 67, was diagnosed with multiple sclerosis in her mid-thirties. She has used a wheelchair for the past five years. Jana lives across the street from her daughter and son-in-law. They help with running errands, grocery shopping, and transporting Jana to her doctor’s appointments.
Jana had relapsing-remitting MS throughout her 30s and 40s, but she has now progressed to secondary-progressive MS. Her symptoms have worsened to the point where she is fatigued most of the day, finds it hard to concentrate on previously enjoyable activities, and relies on her wheelchair 70% of the time, even at home, to conserve her energy.
Jana recently fell when moving from her wheelchair to her bed. She would like more support to help with her activities of daily living, but she does not want to impose on her daughter.
What is MS?
Multiple sclerosis (MS) is an autoimmune disorder in which the immune system attacks the fatty coating on nerve cells in the brain, spinal cord, and optic nerves (nerves to the eyes). The immune system mistakes these healthy nerve cells for foreign invaders. The exact cause of MS is unknown.
A nerve cell has hundreds of extensions called dendrites that connect with hundreds of other nerve cells to carry electrical impulses to the cell body of the nerve cell. This information is integrated in the nerve cell body, and an electrical impulse is sent down another extension called an axon, which synapses (connects) with another nerve cell.
To speed up the transmission of these electrical impulses, axons have a fatty coating called myelin, which acts as an insulator. When the immune system destroys the myelin sheath that surrounds axons, the transmission of electrical impulses slows. The symptoms of MS will vary depending on which areas of the brain have damaged nerve cells. Scar tissue replaces the damaged nerve cells, giving rise to the term multiple sclerosis.
What are the types of MS?
The International Advisory Committee on Clinical Trials in MS defined four major types of MS in 2013. Each type of MS can take a mild, moderate, or severe course because MS affects each person differently.
Clinically Isolated Syndrome
A person is diagnosed with clinically isolated syndrome (CIS) if they have an episode lasting at least 24 hours that is caused by inflammation and loss of myelin. CIS may or may not progress to MS. If a lesion that is characteristic of MS is discovered on magnetic resonance imaging (MRI), the likelihood of progression to a diagnosis of MS is higher than if no lesion is found.
Primary-Progressive MS
With primary progressive MS, neurologic symptoms lead to a steady decline in function from the onset of the disease. There are no early onset remissions or flares. However, there may be periods in which the condition does not worsen and remains stable. About 15% of people with MS have primary-progressive MS.
Relapsing-remitting MS
Relapsing-remitting MS is the most common form of the disease. The disease course is marked by clearly defined episodes of new or increasing neurologic symptoms. After a relapse, symptoms may go away completely or result in a baseline level of disability.
Secondary Progressive MS
Secondary progressive MS follows relapsing-remitting MS. Once this transition to secondary progressive MS occurs, there is a progressive worsening of neurologic function.
Jana developed secondary progressive MS about ten years ago. She uses a wheelchair most of the time to conserve energy and because she has problems with muscle weakness and maintaining her balance. Since her husband died seven years ago, Jana has lived alone, but her daughter and family live across the street. With help from her daughter, Jana has managed to live independently, but she is concerned that she may reach a point where this may not be feasible for her. Her daughter and son-in-law have invited her to live with them, but she values the privacy and independence having her own home provides.
What are the symptoms of multiple sclerosis?
MS can cause a wide range of symptoms depending on which nerve cells in the body are affected. Common symptoms include:
- Vision problems
- Fatigue
- Dizziness
- Trouble concentrating
- Mood changes
- Depression
- Numbness
- Tingling
- Memory problems
- Pain
- Muscle spasms
- Headaches
- Difficulty walking
- Muscle weakness
- Balance problems
- Paralysis
- A feeling of pressure around the torso
How does aging affect a diagnosis of multiple sclerosis?
The symptoms of progressive MS overlap with those of aging, including muscle weakness, balance problems, fatigue, vision changes, sleep disturbances, and difficulty thinking and concentrating. This can make it more difficult to diagnosis older adults with symptoms that may be explained by multiple medical conditions.
Does multiple sclerosis affect your lifespan?
MS is considered a chronic disease. Secondary infections and cardiovascular and nervous system diseases may shorten lifespan, but MS is not expected to. In a 2017 study involving almost 6,000 people with MS and almost 29,000 people without MS, who were age-matched and from the same geographic location, the median survival for the MS population was 75.9 years. For the non-MS population, it was 83.4 years.
Does everyone get secondary-progressive MS?
Secondary progressive MS follows relapsing-remitting MS in some people. FDA-approved medications called disease modifiers can limit the areas of damage to myelin in the brain and therefore may delay or prevent the onset of secondary-progressive MS. Before using disease-modifying drugs, about half of people with relapsing-remitting MS would transition to secondary-progressive MS within ten years, and 90 percent would transition within 25 years.
Nearly 1 million people in the US live with MS. In most people, MS will not be the primary cause of death. However, Jana and others living with similar symptoms of MS find themselves unable to live at home without support, but not wanting to move into a rehabilitation or assisted living facility.
How can home healthcare help you manage multiple sclerosis?
Jana and her daughter contacted Sunland Home Care & Medical. They arranged to have a nurse visit weekly to do a full assessment of Jana’s needs. Jana and her daughter will rely on the nurse assessment and Jana’s doctor’s recommendations to determine whether it is safe for Jana to continue to live independently. Jana has also requested that she receive in-home services from a Sunland Home Care & Medical caregiver, four hours per day. The caregiver will help with her personal care and help prepare her meals and do light housekeeping. Jana’s daughter will check in every evening and help her mother get ready for bed.
Sunland Home Care & Medical can:
- Administer medications
- Assess nutritional status
- Develop an action plan
- Do light housekeeping
- Provide transportation to medical appointments
- Prepare meals
- Assist with personal care