World Multiple Sclerosis Day 2020: Five tips for caregivers of MS patients
Multiple sclerosis occurs when our immune system attacks the myelin sheath (the outer layer) of the brain cells.
World Multiple Sclerosis (MS) Day is an annual event organised by the MS International Foundation (MSIF) on May 30. The day focusses on raising awareness about the disease and on trying to connect the 2.3 million people living with the condition worldwide.
Multiple sclerosis occurs when our immune system attacks the myelin sheath (the outer layer) of the brain cells. The damaged or destroyed neurons are then unable to transmit signals properly in the brain or just stop signalling altogether. The name multiple sclerosis comes from the fact that these damaged tissues develop scar tissues - so there are multiple areas of scarring.
The theme of this year’s MS day is ‘connections’. It aims at building connections in the community, self-connections and connections with quality care so people with MS don’t feel lonely.
People with multiple sclerosis can have symptoms like fatigue, tingling, pain, difficulty walking, bladder, bowel and vision problems and others. These may vary in severity from one person to another, may disappear, relapse or gradually worsen.
As per the Multiple Sclerosis Trust, UK, MS patients often find themselves depressed due to their symptoms and disabilities and the way people react to their condition. Stigma occurs when people are stereotyped, prejudiced and discriminated against. This can lead to the exclusion of the person from society. Studies suggest that people with MS often find themselves depressed, more due to the stigma than the disability itself.
Therefore, MS patients need a lot of support (both mental and physical) and care.
Caring for multiple sclerosis patients
Family members or friends are usually the primary caregivers of MS patients. If you too know someone who is diagnosed with MS, you need to know that MS is an unpredictable situation. Here are some ways to be better caregivers of MS patients:
1. Let them be independent: Many MS patients like to be independent even as the disease progresses. You need to know when to let them be and when to interfere. To help them, you can make certain changes in their home, like installing ramps for wheelchairs (if needed) and widening the doorways. You can also add other tools and gadgets that help them go about their everyday activities with ease and minimum amount of help.
2. Know the treatments and experts: Read as much as you can and update yourself on the latest treatments and the right medicines that help manage the situation for people with mild MS. As MS worsens, patients are often taken off the disease-modifying therapies (DMTs) and it’s normal for you to feel helpless but now is the time to not give up. Work with physiotherapists to help them maintain their body movements (and hence independence) and speak to their doctor about switching to devices like functional electrical stimulation - that give mild shocks to muscles so they can function better.
3. Keep a log of medical care: Keep an eye on their symptoms and if they are changing or getting better. Try not to skip any appointments with the doctor. You can keep a log of all the appointments and set reminders to help you with this. If they are not willing to go see the doctor due to extreme fatigue or other symptoms, try to check for home appointments in your area.
4. Take up a healthy lifestyle: Experts say that a healthy lifestyle and diet has a huge role in managing disease symptoms and slowing down the progression of the disease. So, support them in this and adopt their healthy-life routine. On the plus side, this will also keep you fit.
5. Get help: Don’t try to take on all the responsibilities. Instead, find a way to split responsibilities with other family members or close friends so you get some time for self-care. If that isn’t possible on a regular basis, at least ask for help from friends, family and your local MS organizations when you absolutely need it.
For more information, read our article on Multiple Sclerosis.
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