Vincent Macaluso, MD, found out he had multiple sclerosis (MS) when he was in medical school. Today, he treats people with MS at his clinic in New Hyde Park, N.Y.
He understands better than most people that MS can change the way you think, feel, and act. 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 symptoms 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 sometimes family members or co-workers 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 support and help when and if you need it.
At some point, more than half of everyone 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.”
Vartanian says 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. He adds that things that can affect brain function like “depression, anxiety and stress all need to be addressed head-on.”
There are also lots of things to let your loved ones know about so that they can help you deal with the memory problems that come with MS.
You might think better when it’s cool. Damaged nerves don’t function 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 the Netflix!). Let them know that’s the goal in case you forget now and then.
To-do lists are key. 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.
Routine, routine, 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.
Repeat again. When someone tells you something, repeat it back. That way, it’s more likely to stick in your mind -- and theirs.
Depression is one of the most common symptoms of MS. It can be very 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’s not 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