For Parents with MS: Everyone wins when family outings aren't physically demanding or time consuming -- that way fatigue doesn't interrupt fun.
Perhaps the most frustrating element of MS is its unpredictability. The pattern of symptoms, progression, and stability may change at any time.
Though essential for long-term health, treatment for MS does not stop flares or progression; symptoms may still occur unexpectedly.
How to Help a Person With MS: Offer your arm. Mobility and balance symptoms can make extra support walking or going downstairs helpful.
The unpredictability of MS may contribute to depression in spouses, children, loved ones, and the person with MS. Talking about it may help.
"Big picture" decisions based on family priorities and personal values may help the whole family cope with the uncertainties of the future.
For Parents with MS: Need help at home? Let children help decide what to do to give them a sense of control and belonging.
Like this game, a person with MS starts with no idea of the correct pattern that will win the game. While MS is unpredictable, quality of life is attainable with the right combination of medications; self-care like stress management; and strategies to keep daily activities routine.
Winning one game doesn't always make you feel you'll win the next. When symptoms remit, those with MS expect to be happy but may be anxious about when symptoms will return or if they'll be worse next time. It is never easy to live in the present; establishing realistic short-term goals may help.
With each turn, you decide whether to tell your opponent about color or position. Similarly, those with MS decide how much to share about symptoms. Talking with family members about the type and degree of help that is required can prevent vicious cycles of under- or overdependence.
Many people with MS don't have cognition problems -- they can reason, problem solve, and concentrate like anyone else.
Medication for MS doesn't cure it or stop progression. But it may shorten attacks or ease symptoms.
All symptoms aren't contained within a flare. Some may occur at any time, such as stiff muscles and bladder or bowel problems.
Sometimes symptoms during an exacerbation don't completely remit when the flare ends. Recovery may not be complete.
Don't Say It: "But you look fine." This comment minimizes the impact of unseen MS symptoms -- like numbness, tingling, and fatigue.
If you need accommodations at work, try this approach with your boss: "Here's how I can be more productive, effective, and reliable."
Don't Say It:"I know someone with MS who does just fine." Comparing people's extent of disability is insulting.
Living with MS is like playing this game. Just like you only have eight chances to find the solution, those with MS plan their days in accordance with their limited energy and excess fatigue, so they prioritize their moves for success.
Just like each game starts with a new puzzle, the variability of MS limits opportunities for learning and practice, so it can be hard to learn coping skills. One goal is to develop a "one day at a time" perspective and adapt expectations -- what might be "normal" one day may not be normal the next.
Just like knowing you have a marble of the right color doesn't win the game -- treatment with medication doesn't stop MS. It doesn't prevent flares or progression, but it can help reduce the frequency and severity of attacks and delay the onset of permanent disability.
The most common cognitive problem with MS is memory loss about recent events, which can also cause problems learning something new.
How MS Feels: Imagine that you're playing this game with a numb, tingling hand or fingers; a common MS symptom.
Exacerbations are unpredictable. They are new symptoms or the sudden worsening of symptoms, which may last days to months.
Indoor games and activities are great on a warm day because heat may exacerbate MS symptoms.
How MS Feels: Imagine playing this game with marbles that shimmy. That's how the board looks if vision is blurred.
How to Help a Person With MS: Offer to drive. During a flare, people often have delayed reactions or vision issues that impair driving.
Laugh -- and cry -- with your friend who has MS. Both can ease stress, and stress can make symptoms worse.
Don't underestimate an MS opponent's strategic skills. That wobble in their walk from loss of balance or dizziness provides opportunity every day to think through how to get done the tasks of daily living -- like walking from place to place or down stairs -- with the least interruption to their day.
Without feedback from your opponent, you'd never win this game. When a loved one has MS, ask them what you can do to help. And ask them to be clear with you when they need help and what kind -- and when they don't.
Being a good sport isn't always easy. When a parent has MS, children may feel ashamed and embarrassed to be seen with them. One way to respond is to talk with them. Ask questions about what they are thinking. Try to alleviate some of their concerns.
SOURCES: DiversityInc.com. National MS Society: “Living With
MS.” United Spinal Association: “Spinal Cord Disorders: Uncertainty in
Illness for Persons with Multiple Sclerosis.” WebMD Medical Reference: Multiple
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