March 3, 2023
How can you help someone with multiple sclerosis?
Keep them cool. Heat makes symptoms worse. Plan activities for the coolest part of the day and don't expect them to be able to tolerate theme parks during the hot part of the day, hot daytime picnics, boating in the sun, vacations to hot destinations, etc... But remember, they still want to be included and still have fun in their lives, so be considerate when planning. Cooling towels, fans, AC, cold water, a shade umbrella, tinted windows, and other little creature comforts go a long way to helping keep body temperature down. ( ...and or an UnderCool from us ; )
Save steps. Fatigue is a life-changing problem for people with MS. Not to mention, difficulty with balance, coordination, pain, and muscle spasms. Try to reduce the amount of energy they have to spend getting from the car to the house, from the car to the store, etc... Every step counts. Use scooters, wheelchairs, and other assistance tools without embarrassment.
Keep emotions in check. Emotional stress is hard for anyone, much less someone that has a very serious illness. Are you being greedy with your behavior? Causing unnecessary drama? When you see unnecessary stress arising, head it off at the pass. Explain to your family, even your young children that fighting, disagreeing, being difficult, and conflict of all kinds make the person with MS sicker.
Concede control over some things. When someone has MS they lose control over their future and generally speaking their health. As a result, MS, like many other chronic illnesses cause some people to feel they have to "micromanage" or overcontrol other aspects of life. When I see this happening in my family I am okay with this need to control something and recognize it is just a part of all of us needing to feel like we have some control in our life.
Look for things to do that can be enjoyed. Maybe a new hobby is in order. Maybe going somewhere new, making new friends, and trying new foods is in order. Life is changing for this person and they need to feel joy, pleasure, and excitement just like you do. As time goes on, MS changes too. That means you have to constantly adapt and look for things that will bring pleasure and meaningfulness.
Listen. Listen to their fears, concerns, and their ideas. Be supportive and help them try different things to ease symptoms and support staying mobile and healthy. Understand when that person is asking for you to problem solve, and when they are asking for just a supportive ear. There is a big difference. Sometimes they just need to talk.
Plan for the future. Make decisions about where you live and what you do that can be adapted to changing physical ability. Think about remodeling a bathroom to be more accessible. Think about putting in a sidewalk that's easy to balance on or could accommodate a scooter or wheelchair. Taking the right steps now can mean that the future will not be stressful for everyone. Try not to make it seem like the worst is coming, just make it a part of natural evolution.
Realize that symptoms can come and go, especially with relapsing-remitting MS. While you might need to use a cane or wheelchair today, it might not be that way tomorrow. Progressive MS does not have as much of this back and forth, but other people can experience ups and downs. Try to be adaptable and understanding and flow with the uncertainty.
Don't push support groups and MS communities. While some thrive on connecting with others who have MS. Some people find this completely upsetting, even leading to major depression. Each person faces their own course with MS. If they do not want to connect with others do not force the issue. Having a doctor who supports and cares about you is the most important thing to have.
Kim Perry, Doctorate of Education, Master's in Health Education, Registered Radiologic Tech.
She has a family member with MS and hopes this helps shed some light. MS is a long-haul condition. Be kind, understanding, and adaptable. Take things one day at a time yet keep your hope and optimism.
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