Vincent Macaluso, MD, found out he had multiple sclerosis (MS) when he was in medical school. Today, he treats people who have MS at his clinic in New Hyde Park, NY.
He understands that MS can change the way you think, feel, and act better than most people. He also knows firsthand how hard it can be to explain this to others.
Symptoms like memory problems and depression happen because MS affects the way your brain works. Although these problems can have a huge impact on your life, other people may not always know you have them. Macaluso says it’s common for people with MS to look fine on the outside but not feel fine on the inside.
It can go the other way, too. Tim Vartanian, MD, director of the Judith Jaffe Multiple Sclerosis Center in New York, says family members or co-workers may notice the changes first.
Either way, it’s important to let those closest to you know what’s going on now and what could happen down the road. This helps them better understand any changes they see. They can also offer help when and if you need it.
At some point, more than half the people with MS will have cognitive problems. (Some people with MS call it “cog fog.”) Vartanian says the most common symptoms are:
- Slowed thinking
- Fuzzy memory
- Trouble with executive function -- your ability to plan and do things
And sometimes you just might not feel as sharp as you used to.
People with MS can have some or all of these things. But for most, memory problems top the list. Vartanian says MS can affect recent memories or those in the distant past.
For many, though, day-to-day symptoms are often mild. But even minor lapses can be a challenge. (Memory problems are one of the main reasons people with MS stop working.)
To explain how this feels, try putting it in terms others can relate to. You could say, “Remember how upset you were when you couldn’t find your car keys yesterday? As my MS goes on, that could happen to me more 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, like “depression, anxiety, and stress, all need to be addressed head-on,” Vartanian says.
Let your loved ones know things that can help you manage the memory problems that come with MS.
Keep it cool. Damaged nerves don’t work well in the heat. That’s why many (but not all) people with MS think and learn better when it’s cool. To improve focus, spend time with your friends in a cool, quiet place without distractions. (Step away from Netflix!) Let them know that’s the goal in case you forget now and then.
Make to-do lists. Many people with MS say they lose track of bits of paper. Instead, you may use a small recorder you can hang around your neck or the voice recorder on your phone. And let your friends know you’re doing it so they can help.
Set 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 if they spot them someplace else, they can put them back.
Sound the alarm. Use 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 what the alarm is for.
Put it on repeat. When someone tells you something, repeat it to them. That way, it’s more likely to stick in your mind -- and theirs.
Depression is one of the most common MS symptoms. It can be hard to discuss. Some people see it as a sign of weakness. Others feel embarrassed or ashamed. And when you’re depressed, it’s normal to want to withdraw from others.
But it’s important to share how you’re feeling with people close to you. Explain that depression is a natural part of the process of MS and it needs treatment, just like any other symptom. It isn’t something you can snap 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, NC. She has MS, as do many of the people she sees. She says that while a counselor can help manage the emotions of living with MS, people who are depressed may need medication, too. She also notes that people need an MS-free zone -- “a part of life or a passion that MS may not interfere with.”
Exercise is a crucial piece, too. It’s important for your overall health and well-being. It also helps almost every aspect of MS and may work better for depression than antidepressant medicine. So you can tell a friend that a workout partner can really help you stay on track.
Also tell those closest to you that these things can help keep depression away:
- Healthy ways to manage stress
- A more plant-based diet
- Plenty of rest
- Help finishing your to-do list when you need it
Vincent Macaluso, MD, neurologist, New Hyde Park, NY.
National Multiple Sclerosis Society: “But You Look So Good!” “Emotional Changes,” “Caring for Loved Ones with Advanced MS: A Guide for Families,” “Depression,” “Exercise.”
Tim Vartanian, MD, director, Judith Jaffe MS Center at Weill Cornell Medicine, New York City.
Multiple Sclerosis Trust: “Explaining MS to Others,” “Thanks for the memory: forgetting things and MS.”
Multiple Sclerosis Journal: “The effect of self-assessed fatigue and subjective cognitive impairment on work capacity: The case of multiple sclerosis.”
Cedars Sinai Medical Center: “Research Sheds Light on Hidden MS Symptoms.”
Jessica Thomas, licensed clinical social worker, Greensboro, NC.