Understanding Multiple Sclerosis: Insights from Experts
The Journey of Dr. Vincent Macaluso
Vincent Macaluso, MD, discovered his own battle with multiple sclerosis (MS) while in medical school, a revelation that shaped his understanding of the condition in a unique way. Today, he dedicates his practice in New Hyde Park, New York, to treating individuals grappling with MS.
Dr. Macaluso’s firsthand experience with MS allows him to empathize with the challenges it brings, particularly in communicating its impact on cognition and emotions to others. He highlights how symptoms like memory issues and depression arise due to the brain’s altered functioning, often invisible to outsiders but profoundly affecting the individual.
This disconnect between outward appearance and internal struggles is a common thread in MS, a sentiment echoed by Tim Vartanian, MD, from the Judith Jaffe Multiple Sclerosis Center. Dr. Vartanian emphasizes the importance of open communication with loved ones to facilitate understanding and support as MS progresses.
Navigating Cognitive Challenges in MS
More than half of individuals with MS will experience cognitive difficulties at some point, with common symptoms including slow thinking, memory lapses, and challenges in executive function. While these issues may vary in severity, memory problems often take center stage, impacting both recent and distant recollections.
Despite the typically mild nature of everyday symptoms, even minor cognitive slips can pose significant hurdles, leading some individuals to face obstacles in their professional lives. Effective communication strategies, such as relating experiences to relatable scenarios, can help convey the cognitive nuances of MS to others.
Practical Tips for Managing Memory and Cognitive Issues
Collaborating with a neuropsychologist can offer valuable strategies for enhancing cognitive function through exercises and addressing underlying factors like depression and stress. Additionally, practical tips such as:
- Adapting to temperature sensitivity for optimal cognitive performance
- Utilizing technology for organization, like voice recorders or reminders
- Establishing routines and utilizing visual cues for memory retention
These approaches can empower individuals with MS to navigate daily challenges and optimize cognitive well-being.
Addressing Depression in MS: A Multifaceted Approach
Depression emerges as a prevalent symptom in MS, often complex to address due to stigma and internalized shame. Open communication with loved ones about the emotional impact of MS is crucial, highlighting that depression is a treatable aspect of the condition requiring professional intervention.
Combating depression goes beyond medication, with lifestyle modifications like exercise, stress management, and social support playing pivotal roles in mental well-being. Establishing an MS-free zone and engaging in activities unaffected by the condition can provide emotional respite and holistic care.
Insights from a Social Worker Living with MS
Jessica Thomas, a social worker navigating MS herself, emphasizes the importance of emotional support and holistic approaches in managing the condition. From counseling to lifestyle changes, fostering resilience and finding joy in life beyond MS is essential for overall quality of life.
Exploring avenues like exercise, healthy diet choices, and adequate rest can offer multifaceted benefits for mental and physical health, complementing traditional treatment approaches. Creating a supportive environment and embracing activities unaffected by MS can foster resilience and emotional well-being.
Continued Education and Support for MS Management
For those seeking in-depth information and practical insights on living well with MS, resources like WebMD’s MS newsletter offer detailed guidance and support. Stay informed about the latest advancements in MS care and join a community dedicated to enhancing the quality of life for individuals with MS.
Summary
Multiple sclerosis presents a complex tapestry of cognitive, emotional, and physical challenges, necessitating a multifaceted approach to care. By openly communicating with loved ones, leveraging practical strategies for memory and cognitive well-being, and embracing holistic approaches to mental health, individuals with MS can navigate their journey with resilience and grace.
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Vincent Macaluso, MD, discovered he had multiple sclerosis (MS) while in medical school. Today, he treats people suffering from 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 the brain works. Although these problems can have a big 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 happen the other way around. Tim Vartanian, MD, director of the Judith Jaffe Multiple Sclerosis Center in New York, says family members or coworkers may notice changes first.
Either way, it’s important to let those closest to you know what’s happening now and what might happen in the future. This helps them better understand any changes they see. They can also offer you help when you need it.
At some point, more than half of people with MS will have cognitive problems. (Some people with MS call it “gear fog.”) Vartanian says the most common symptoms are:
- Slow thinking
- blurred memory
- Problems with executive function: your ability to plan and get things done
And sometimes you may not feel as alert as before.
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 those from the distant past.
However, for many, everyday symptoms are usually mild. But even minor mistakes can be a challenge. (Memory problems are one of the main reasons people with MS stop working.)
To explain how this feels, try to express it in terms that others can relate to. You could say, “Do you remember how upset you were yesterday when you couldn’t find your car keys? “As my MS progresses, that might happen more often.”
People with MS should work with a doctor called a neuropsychologist who can suggest ways to sharpen the mind. This includes physical and mental exercises. Things that can affect brain function, such as “depression, anxiety, and stress, need to be addressed head-on,” Vartanian says.
Tell your loved ones things that can help you manage the memory problems that come with MS.
Take it easy. Damaged nerves do not function well in heat. That’s why many (but not all) people with MS think and learn better when the weather is nice. To improve concentration, spend time with your friends in a cool, quiet place without distractions. (Stay away from Netflix!) Let them know that’s the goal in case you forget from time to time.
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.
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 location is, so that if they see them somewhere else, they can return them.
The alarm sounds. Use bells and whistles on your phone or computer to remind you to do things. Your loved ones can set the same alarms to remind you in case you forget what the alarm is for.
Put it on repeat. When someone tells you something, repeat it back to them. 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 difficult to discuss. Some people see it as a sign of weakness. Others feel ashamed or ashamed. And when you’re depressed, it’s normal to want to distance yourself from others.
But it’s important to share how you feel with the people close to you. Explain that depression is a natural part of the MS process and needs treatment, like any other symptom. It’s not something you can get out of. And despite your 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 she sees. She says that while a counselor can help manage the emotions of living with MS, depressed people may also need medication. She also points out that people need an MS-free zone: “a part of life or a passion that MS can’t interfere with.”
Exercise is also a crucial piece. It is important for your overall health and well-being. It also helps with almost all aspects of MS and may work better for depression than antidepressant medications. So you can tell a friend that a training 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
- Lots of rest
- Help finish your to-do list whenever you need it
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