Vincent Macaluso, MD, discovered he had multiple sclerosis (MS) while in medical school. Today he treats people with MS at his clinic in New Hyde Park, NY.
He understands that MS can change the way you think, feel and act more than most people. He also knows from his own experience 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, other people may not always know that you have them. Macaluso says it’s common for people with MS to look good on the outside but not feel good on the inside.
It can also go the other way. Tim Vartanian, MD, director of the Judith Jaffe Multiple Sclerosis Center in New York, says family members or coworkers may notice the changes first.
Either way, it’s important to let your loved ones know what’s going on now and what might happen in the future. This allows them to better understand the 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 experience cognitive problems. (Some people with MS call it “tooth fog.”) Vartanian says the most common symptoms include:
- Slowed thinking
- Vague memory
- Problems with executive function – your ability to plan and do things
And sometimes you may not feel as sharp as you used to.
People with MS may have some or all of these things. But for most, memory problems top the list. Vartanian says MS can affect recent memories or memories from the distant past.
However, for many, daily symptoms are often mild. But even small mistakes can be a challenge. (Memory problems are one of the main reasons people with MS stop working.)
To explain what this feels like, try putting it in terms that others can relate to. You might say, “Remember how angry you were when you couldn’t find your car keys yesterday? As my MS progresses, this may 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, such as “depression, anxiety, and stress, all need to be addressed head-on,” says Vartanian.
Let your loved ones know things that can help you cope with the memory problems associated with MS.
Keep it cool. Damaged nerves do not 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. (Get away from Netflix!) Let them know this is the goal, just in case you forget every now and then.
Make to-do lists. Many people with MS say they lose track of pieces of paper. Instead, you can use a small recorder that 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 spot is so that if they see it somewhere else, they can put it back.
Sound the alarm. Use bells and whistles on your phone or computer to remind you to do things. Family members can set the same alarm so they can remind you if you forget what the alarm is for.
Set it to repeat. If someone tells you something, repeat it back to him/her. 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 difficult to argue. 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 is important to share your feelings with people around you. Explain that depression is a natural part of the MS process and needs treatment just like any other symptom. It’s not something you can escape from. 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, like 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 also need medication. She also notes that people need an MS-free zone – “a part of life or a passion that MS should not interfere with.”
Exercise is also a crucial component. It is important for your overall health and well-being. It also helps with almost every aspect of MS and may work better for depression than antidepressants. So you can tell a friend that a training partner can really help you stay on track.
Also tell your loved ones that these things can help keep depression away:
- Healthy ways to deal with stress
- A more plant-based diet
- Sufficient rest
- Help complete your to-do list when you need it
