
Living With MS Without Putting Life on Hold
Living with MS is not just a medical journey — it is a personal and family experience that requires communication, support and shared understanding.
By
Mike DeMarco| Published on February 17, 2026
6 min read
When people hear the words “multiple sclerosis,” the first reaction is often fear. Fear of disability. Fear of losing independence. Fear of what life might look like five, 10 or 20 years down the road.
I’ve heard those fears echoed across many conversations on this podcast. But few discussions capture both the medical reality and the lived experience of MS quite like my recent conversation with neurologist Mark Leekoff, M.D., and his father, David, who has lived with MS for more than three decades.
Their story offers something powerful. Not false reassurance, and not sugarcoating the diagnosis. Instead, it offers clarity, perspective and a reminder that MS today is very different from what it once was.
Understanding MS Without Overwhelm
At its core, multiple sclerosis is an immune-mediated condition. The body’s immune system mistakenly attacks the protective coating around nerves in the brain, spinal cord and eyes. That damage can interfere with how the nervous system communicates, leading to symptoms like numbness, weakness, fatigue or vision changes.
But what matters just as much as the definition is how that information is delivered.
Dr. Leekoff is intentional about meeting patients where they are. He understands that when someone is newly diagnosed, they are often carrying shock, anger, disbelief or panic all at once. Clarity matters in those moments, both medically and emotionally.
One of the first questions patients ask him is the same question David and his family asked decades ago: “Will I end up in a wheelchair?”
That question makes sense when MS has long been framed as a progressive, disabling disease. But it no longer reflects the full picture.
How MS Care Has Changed
David was diagnosed at a time when treatment options were limited. Early therapies existed, but many were modest in their effectiveness. Progression was more common. At least some degree of disability felt inevitable.
Today, MS care looks very different.
There are now highly effective disease-modifying therapies that can slow, stop or dramatically alter the course of the disease when started early. For many patients, MS has shifted from something that defines their future to something that is actively managed alongside it.
Dr. Leekoff describes MS today as closer to a lifestyle condition than a guaranteed path to disability. Rather than minimizing the disease, this framing restores agency.
If someone had to receive an MS diagnosis, he often tells patients, this is the best time in history to receive it.
The Role of Purpose in Care
For Dr. Leekoff, MS is personal. His father’s diagnosis is what pulled him toward neurology and ultimately shaped the way he practices medicine.
That dual perspective shows up immediately in how he connects with patients. He introduces himself not only as an MS specialist but as the son of someone who lives with the disease. That disclosure changes the dynamic. It builds trust and signals partnership.
Purpose matters here. On the physician side, but also the patient’s.
While MS does not erase a person’s goals, identity or direction in life, it asks for adjustment. The most successful care plans are not built solely around MRI results or medication selection. They are built around helping people live fully with MS without placing their life on hold.
MS Is a Family Experience
MS does not affect only the individual diagnosed. It ripples outward into families, relationships and daily routines.
David speaks openly about wanting to remain independent. He did not want pity or overprotection. He wanted support that respected his autonomy.
That balance can be difficult for families. The instinct to help can sometimes slip into taking over. What patients often need most is space to remain themselves, paired with calm, informed support.
Open communication matters. So does reducing stress, something both David and Dr. Leekoff emphasize repeatedly.
Stress does not just affect mood. It can amplify symptoms, trigger old ones and make daily management harder. Learning how to manage stress, protect energy and prioritize well-being becomes part of treatment, not an afterthought.
Health Beyond Medication
Medication plays a critical role in MS care, but it is not the entire story.
David credits movement as a cornerstone of his well-being. Regular walking, time outdoors and physical activity have helped him maintain both physical and mental health. Exercise did not cure his MS, but it supported his quality of life in ways no single prescription could.
Dr. Leekoff echoes this broader view of health. Symptom management, mental health support and realistic lifestyle guidance all matter. The goal is not simply preventing progression, but helping patients feel like themselves.
Looking Forward With Hope
There is genuine momentum in MS research. New therapies are being developed for progressive forms of the disease. Researchers are exploring ways to repair damaged nerve pathways, not just slow damage.
That progress matters. As does the patient care experience today.
The takeaway from this conversation is not that MS is easy. It is that MS is navigable.
With informed providers, effective treatments, supportive relationships and a clear sense of purpose, MS does not have to define a person’s life. It becomes one part of it.
And that shift, from fear to partnership, is where real empowerment begins.

