Vincent Macaluso, MD, discovered he had multiple sclerosis (MS) when he was in medical school. Today, he treats people with MS at his clinic in New Hyde Park, New York.
He understands that MS can change the way you think, feel, and act better than most people. He also knows firsthand how difficult it can be to explain this to others.
Symptoms such as memory problems and depression occur because MS affects the way your brain works. Although these problems can have a huge impact on your life, others may not always know that you have them. It’s common for people with MS to look good on the outside but not feel comfortable on the inside, Macaluso says.
It can go the other way, too. Family members or co-workers may notice changes first, says Tim Vartanian, MD, director of the Judith Jaffe Multiple Sclerosis Center in New York.
Either way, it’s important to let those close to you know what’s happening now and what could happen in the future. This helps them better understand any changes they see. They can also provide help when and if you need it.
At some point, more than half of people with MS will have cognitive problems. (Some people with MS call it ‘toothed fog’.) Vartanian says the most common symptoms are:
- slowed thinking
- blurry memory
- Trouble with Executive Function – Your ability to plan and do things
Sometimes you may not feel as intense as you are used to.
People with MS can have some or all of these things. But for most memory problems, it tops the list. Vartanian says that MS can affect recent memories or those in the distant past.
For many, daily symptoms are often mild. But even minor glitches can be a challenge. (Memory problems are one of the main reasons people with MS stop working.)
To explain how this feels, try to put it into terms that others can relate to. You could say, “Remember how upset you were when you couldn’t find your car keys yesterday? With MS going on, it can happen to me quite often.”
People with MS should work with a doctor called a neuropsychologist who can suggest ways to sharpen the mind. This includes both mental and physical exercises. Things that can affect how well your brain works, such as “depression, anxiety, and stress all need to be addressed head-on,” Vartanian says.
Let your loved ones know the things that can help you manage the memory problems associated with MS.
Keep cool. Damaged nerves do not function well in heat. That’s why many (but not all) people with MS think and learn best when the weather is great. To improve focus, spend time with your friends in a quiet and quiet place without any distractions. (Stay off Netflix!) Let them know that’s the point in case they forget it now and then.
Make to-do lists. Many people with MS say they’ve lost track of paper cuts. Alternatively, you can use a small recorder that you can hang around your neck or a voice recorder on your phone. And let your friends know you’re doing this so they can help.
Establish a routine. Put your car keys, phone, and glasses in the same place so you always know where they are. Let your loved ones know where that place is, so that if they find out where they are somewhere else, they can bring them back.
Sound the alarm. Use the bells and whistles on your phone or computer to remind you to do things. Loved ones can set the same alarms so they can remind you in case you forget the reason for the alarm.
Put it on repeat. When someone tells you something, repeat it to them. That way, you’re more likely to stay on your mind — and theirs.
Depression is one of the most common symptoms of MS. It can be difficult to discuss. Some people see it as a sign of weakness. Others feel embarrassed or ashamed. And when you’re depressed, it’s natural to want to withdraw from others.
But it is important to share how you feel with the people close to you. Explain that depression is a normal part of the MS process and needs treatment, just like any other symptom. It’s not something you can get out of. And despite their best efforts, your friends and family probably won’t be able to cheer you up.
Jessica Thomas is a social worker in Greensboro, North Carolina. She has MS, as do many of the people you see. She says that while a counselor can help manage feelings of living with MS, people with depression may need medication as well. She also notes that people need an MS-free zone—”a part of life or a passion that MS might not interfere with.”
Exercise is an important part, too. It is important to your overall health and well-being. It also helps every aspect of MS and may work better for depression than antidepressant medications. So you can tell a friend that your exercise partner can really help you stay on the right track.
Also tell people close to you that these things can help get rid of depression:
- Healthy ways to manage stress
- vegan diet
- Lots of rest
- Help finish your to-do list when you need it
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