Living better at home with multiple sclerosis
Multiple sclerosis (MS) can be unpredictable. No two people dealing with it will experience MS in quite the same way. Fortunately, MS is not a fatal disease. The life expectancy of a person diagnosed with MS is about the same as it is for the general population. But it can affect overall quality of life for the person coping with it—from dealing with pain and fatigue to experiencing dizziness and vision problems. With no known cause or cure yet, treatments focus on slowing the progress of MS and managing its symptoms so they are less disruptive to one’s life. With support and care, a person with MS can expect to live a long and fulfilling life at home.
What is multiple sclerosis?
MS is a chronic neurological disorder that affects the central nervous system. The central nervous system is made up of the brain and spinal cord. Nerve fibers or axons in the central nervous system are surrounded by an insulation layer called myelin, which allows nerve signals to travel properly. With MS, the myelin is destroyed causing inflammation along the nerve. This disrupts transmission of messages communicating a desired action from the brain, through the spinal cord, to various parts of the body.
Inflammation produced by MS damages the axons themselves and can cause permanent loss of function. In the process, the cells that produce myelin also can be damaged, limiting the brain’s ability to repair damaged myelin. This is a lot like having a frayed electrical cord. The insulation ensures that electricity running along the wire reaches its destination without short-circuiting. In MS, when a similar short-circuit occurs, it can cause problems with vision, coordination, sensation in the limbs, and other symptoms.
How severe MS is and how it will progress varies by individual. To assist in managing MS, it is divided into four classifications:
- Relapsing-remitting: With this type, clearly defined attacks last from a few days to weeks. You can expect either full recovery or partial recovery with remaining neurological symptoms and deficits. There’s stability between relapses when the disease is not progressing. By far, this is the most common form of the disease.
- Secondary-progressive: This type starts as relapsing-remitting and progresses consistently. Occasional relapses and minor remission are experienced and deficits are accumulated without recovery between attacks.
- Primary-progressive: The level of disability progresses from the onset without any distinct relapses. You may experience some minor, temporary improvements.
- Progressive-relapsing: This is characterized by a distinct progression of disability level from the onset, including distinct acute relapses that may or may not include memory.
Common MS Symptoms
A person with MS typically experiences some but not all of these symptoms: fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, tremors, vertigo, and depression.
If a group of people with MS came together to discuss the disease, you’d find that no two would have exactly the same symptoms and complaints—and none would experience all of the symptoms. Some would describe their symptoms as persistent, while others would say theirs appear in episodes from time to time.
The nature of the symptoms that occur is determined by the location of the lesion within the central nervous system. For example: blurred vision would be caused by an optic nerve lesion, whereas a spinal cord lesion may result in balance and coordination problems.
Want to know more about MS symptoms?
Visit the National MS Society website. Make an appointment to see your doctor if you’re experiencing any of these symptoms.
If you are the one with multiple sclerosis...
- Maintain good health. It’s important to take care of your primary healthcare needs, as well as MS care to reduce the risk of developing other health conditions (co-morbidities), such as heart disease, stroke, diabetes, or cancer. Maintain a healthy weight and good nutritious diet.
- Make sure you have a primary care doctor. People with MS often rely on their neurologists for all of their healthcare needs. But you don’t want to neglect your overall health and routine care while managing MS symptoms.
- Stop smoking. MS risk is increased in smokers. Smoking also can reduce the effectiveness of certain MS treatments and can pose a fire hazard when the smoker has weakness, coordination problems, and cognitive issues. Quitting even after an MS diagnosis is advised.
- Reduce alcohol and substance use. Alcohol and other substances may interact with medications taken to combat MS symptoms. Although cannabis can help to reduce certain MS symptoms, such as pain and spasticity, smoking marijuana poses some of the same health risks as cigarette smoking. Be careful if you’re using cannabis in other forms, too. It can impair balance, coordination, and cognition. MS progression is not shown to be changed by cannabis use.
- Ask for help when you need it. There are times when maintaining your independence might mean knowing when to ask for help. For example, if you’re having balance or vision problems, consider adding a home care professional to your team to stay safe at home. When partners are at work and teens are at school, having a professional on call to help out if needed can be a lifesaver.
If you’re caring for someone with MS…
- Learn about the disease. When someone you love is diagnosed with MS, knowledge is power. Since MS affects different people in different ways, learn the specifics of how it will likely affect your loved one. Being a supportive partner may sometimes mean stepping in and helping with daily activities. At other times, it will mean steering clear so your home is quiet when your loved one needs rest.
- Have a plan B. MS can be unpredictable. You may need to become a master of the backup plan. If you’re scheduling a beach excursion, build in extra travel time, check on the bathroom facilities ahead of time, and accept that your vision of frolicking in the waves together may be replaced by enjoying a view of the beach from your car.
- Line up help. One day a person with MS might need help dressing, the next they can do it on their own just fine, then they need again. Consider who your support team includes and how flexible people’s schedules are so you can distribute tasks accordingly when circumstances change. A professional caregiver can help with household tasks including shopping, cooking, laundry, and transportation in addition to personal care like dressing, bathing, exercising, and medication reminders.
- Plan me time. Don’t replace your identity with full-time caretaker. You too need to stay healthy, continue doing activities you enjoy, keep seeing your friends, and be sure you’re getting enough sleep and good nutrition. Avoid fatigue, isolation, and growing resentment by taking frequent breaks and counting on help from others when you need it.
Multiple sclerosis facts
- MS is more common in women, appears more frequently in Caucasians than in Hispanics or African Americans, and is relatively rare among Asians and certain other ethnic groups.
- MS is most commonly diagnosed in individuals between the ages of 20 and 50, although it can develop in young children, teens, and older adults.
- Women are at least two to three times more likely than men to develop MS.
- Major symptoms sometimes disappear completely, and the person regains lost function.
- In severe MS, people have permanent symptoms that might include partial or complete paralysis and difficulties with vision, cognition, speech, and bowel and bladder function.
- To learn more about multiple sclerosis or to find resources in your area, visit the National Multiple Sclerosis Society.
- For tips on caring for someone with MS, check out the National MS Societyʼs Guide for Caregivers.
- Find information on volunteering for research studies and clinical trials.
- Explore blogs about multiple sclerosis for info and inspiring ideas.
This information is for educational purposes and is not a substitute for the advice of a medical professional. Source: National Multiple Sclerosis Society
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