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Illustrations: Jackie Ibe
Illustrations: Jackie Ibe

MS through the ages

How you experience MS may depend on how old you are and your diagnosis date. Stories from people ages 23 through 76.

by Matt Alderton

Multiple sclerosis is not a one-size-fits-all illness. Ultimately, how well you wear it can depend on everything from when you were diagnosed, disease type and severity to whether you have comorbidities and what treatment you receive — not to mention your genes, weight, race and gender and also, your age.

An ‘epoch’ illness
Thanks to advances in science and technology, a person’s experience with MS depends largely on when they were born. “We’ve been diagnosing people with MS since the 1800s, and for most of the 19th and 20th centuries, MS was a terminal disease,” explains Jaime Imitola, MD, director of the MS Center at UConn Health in Farmington, Connecticut. He says the only reliable way to diagnose MS for the better part of two centuries was to watch for telltale symptoms like tremors, vision loss and disability, many of which are indicators of advanced disease.

A look back
When healthcare professionals realized the negative effect of heat on MS, they began deploying the “hot bath test,” where patients suspected of having MS were submerged in hot water to observe its impact. If the heat triggered new neurological symptoms or intensified existing ones, the person was presumed to have MS. Changes came with the advent of lumbar punctures and MRIs in the late 20th century. “Because of those advances, we have more accurate diagnoses, and we catch the disease much earlier,” Imitola says.

Treatments have followed a similar trajectory. MS therapies have included leeches, hydrotherapy and snake-oil tonics with toxic ingredients like bee venom, deadly nightshade, arsenic and mercury. Doctors began using steroids to control MS flare-ups in the 1950s. Interferons and other disease-modifying therapies (DMTs) followed.

Ages and stages
Imitola says age can affect MS in myriad ways. Take two people diagnosed with primary progressive MS at the age of 25. If one is 30 years old and the other is 50, the 50-year-old will likely experience more disability because their disease has been progressing longer.

The effects can be cognitive as well. “If you have progressive MS, the brain will shrink and atrophy. So if you get MS when you’re 20, by the time you’re 40, you will have had 20 years of the disease. If your disease is severe enough, your brain by that point might look like a 100-year-old brain,” explains Imitola, who says recovering from MS relapses also is more challenging with age because over time the brain loses plasticity, or resilience.

But age has upsides, too. For one, older adults typically have fewer MS relapses. “As the body gets older, so does the immune system,” Imitola says. “MS is an autoimmune disorder, and when our immune system gets old, our T-cells get lazy and forget what to do.”

Studies also show that people with MS are more likely to experience depression and low quality of life when they’re younger. With age comes increased maturity, confidence and acceptance. “As time passes, people become more stable and learn how to cope,” Imitola says.

Still, no two people are exactly alike, no matter their age. Here, individuals in their 20s, 30s, 40s, 50s, 60s and 70s share their experiences.

Elizabeth Walters (right) is grateful for the support of her friend, Margaret Guy (left), who was with Walters on the day she was diagnosed.

Elizabeth Walters
Age: 23
Location: Charleston, South Carolina
Occupation: Teacher
Type of MS: Relapsing-remitting
Year of diagnosis: 2018

How were you diagnosed?
I’ve had eye problems since I was 16. They went away for a while but came back again when I was 20. My doctors decided there was something systemically wrong, but they didn’t know what. They thought maybe it was my immune system, so they put me on the drug Humira to see what would happen. If you read the fine print, it says Humira is not for people with MS because it will make them have a massive episode. I’d probably had episodes before, but Humira gave me my first real episode. It affected the fine motor function in my hands and face. I had a little bit of a slur and some vertigo. I was a sophomore in college, so it was super embarrassing. I went home and got an MRI, and my MRI showed textbook MS.

How has your disease progressed?
I actually feel like my MS has gotten better. I think knowledge is power, and living with undiagnosed MS for four years made me feel powerless. Knowing what’s going on and how to manage it makes me feel so much better. It’s empowering.

What are your current symptoms?
Truthfully, I live with no daily symptoms, but I am cautious about the heat — especially in South Carolina! Although it’s not a symptom, I like to say that my favorite side effect is gratitude. I love to work out, and I’m just so grateful that my body moves and works on the days that it does.

How has your treatment changed?

When I had eye problems, I got prednisone shots in my eye. That was pretty hard. I also was on intravenous steroids for a short period when I was first diagnosed, and I hated them. Now I’m on Tecfidera, and I love it.

How do you manage your MS?
Food has been a big thing for me. When I first got diagnosed, I was very into researching diets. I was a little bit obsessive. But I’ve learned to cut myself some slack. Being a girl in my 20s, there are days when I want to just go have fun. I still try to eat healthy most of the time, but having a cheeseburger with my friends isn’t going to ruin my life.

What’s your biggest challenge?
Dating has been a big challenge for me. I used to think no one would ever want to date me because I was defective or because they’d assume they’d have to take care of me. Knowing when to disclose to who you’re dating and how to disclose is tricky. Now, I am happily dating my wonderful boyfriend, and the right person can help overcome this hurdle when dating.

What’s the best thing you do to take care of yourself?
I’m a type-A person and a doer, so the biggest thing for me is working hard. It’s a catch-22 because sometimes I feel bad, and I can’t always work hard when you’re feeling bad. But I’m happiest when I’m busy doing lots of things; being active is excellent for your health and helpful to me as a newly diagnosed patient.

What advice do you have for someone who’s newly diagnosed?
Be open with the people who love you. They want to help you. Hiding behind saying “I’m just tired” isn’t letting people who genuinely love you into your reality, so they can share your burden. Be discerning about who you open up to. Not everyone is going to understand or grasp what is going on in your world, and it’s within your rights to value your privacy.

Lt. Nick Powell was diagnosed with MS in September 2019, two months before his first child was born.

Lt. Nick Powell
Age: 30
Location: Jacksonville, Florida
Occupation: U.S. Coast Guard
Type of MS: Relapsing-remitting
Year of Diagnosis: 2019

How were you diagnosed?
It was a regular Monday morning when I woke up to go to work. I got in the shower, and the water felt funny on my feet. I didn’t have 100% sensation. I got out of the shower and put on my socks, and it felt super weird — almost like I was putting on a second skin. By the time I got home from work, I had a tingling feeling up to my ankles, then my thighs. By Tuesday morning, my hands were a little numb, and I had a tingling sensation in my neck. I saw my military doctor, and he sent me to get an X-ray. That came back normal, but things kept getting worse. I got an MRI the following Monday, and on Tuesday I got a call from the clinic on base, asking me to come in. My doctor was there with the senior medical officer. The senior enlisted was there, too. I was like, “Holy smokes, what’s going on here?” They said, “There’s no easy way to say this, but, your MRI results came back today, and they’re consistent with a person who has multiple sclerosis.”

How has your disease progressed?
There have been small changes. But my MRIs have been consistent since my diagnosis, so I can’t say 100% that it’s MS. One thing I’ve noticed, for example, is a loss of coordination. I have a 2-year-old, and if I get up too fast in the middle of the night because he’s crying in the other room, I stumble a little bit. But I don’t know if that’s MS, or if it’s just me getting older. Same thing with my vision. It’s OK, but it’s not what it was when I was 21. It could be MS. But also, I’m a decade older now.

What are your current symptoms?

If I go for a brisk walk or a quick jog, I come home a little tingly afterwards. And my right hand gets a little numb randomly, but not enough to complain about. For the most part, I feel pretty good and can do the things I’ve always done.

How has your treatment changed?
I realized pretty quickly that I should be seeing an MS specialist versus a regular neurologist. When I first got diagnosed, I saw a neurologist who basically told me to go home and research MS medications and to decide which one was best for me. I started out on Tecfidera, then switched to Ocrevus. And for the most part, Ocrevus has been great. I started seeing an MS specialist right after I got on it, and the level of care is vastly different.

How do you manage your MS?
I like to be on the forefront of information. If something is going on in the medical community that might benefit me, I like to stay on top of it. One thing I discovered, for example, was vitamin D. I asked my neurologist, and now I take a high dose of vitamin D once a week.

What’s your biggest challenge?
One of my biggest problems was controlling my emotions. When I was first diagnosed, I would just get so sad and depressed. There were a lot of other things going on at the same time, too. I was diagnosed with MS in September 2019, and my first kid was born in November. Then COVID hit. It was just really stressful. So I was in therapy for a year and a half. Being able to talk to someone for an hour a week made such a huge difference and helped me manage my emotions.

What’s the best thing you do to take care of yourself?
When I was diagnosed, I reached out to the National Multiple Sclerosis Society and found a support group, and it was like finding a second family. There are so many people out there who have stories similar to yours, and there are so many different outlooks about MS. It helps to realize that you’re not in this thing alone.

What advice do you have for someone who’s newly diagnosed?
Don’t lose hope. When I was first diagnosed, I thought it was the end of the world. Everything you can think of that’s bad, I thought that was going to happen to me. But there are so many people out there who live completely normal lives. There are bodybuilders with MS, pilots with MS — you name it. Your life isn’t over.

Danielle “DK” Koblinski tries to listen to her body’s cues when she is tired or fatigued.

Danielle “DK” Koblinski
Age: 33
Location: Houston, Texas
Occupation: Fitness instructor
Type of MS: Relapsing-remitting
Year of Diagnosis: 2016

How were you diagnosed?
Four or five months before I was diagnosed, I started taking naps. I never took naps. Then I noticed my vision was getting weird, and I started having balance issues.

I was tripping and falling a lot. I started feeling pins and needles in my feet. The numbness from my feet went up to my knees, then my thighs, then all the way to the middle of my belly. That’s when I started freaking out.

I was teaching a spin class one day and there was a point when I felt like my legs were dragging through mud. There was no resistance on the bike, but I couldn’t pedal. Everyone said it sounded neurological. I have a friend who’s a trauma doctor, and she told me I needed to go to a hospital. I went to the emergency room and was fast-tracked for an MRI, which showed the beginning stages of MS.

How has your disease progressed?
Everything was dope for five years, but in 2020 things started to progress. My right leg became heavy, my left eye started feeling painful. My vision was blurred, and I began to feel off-balance. Come to find out, I was having my first relapse.

What are your current symptoms?
I get fatigued easily, especially in the heat. I’m still trying to regain strength and balance in my right leg, and cognitively I have to remind myself to slow down when I speak. If I get in a hurry, my words get stuck, and I become frustrated.

How has your treatment changed?
When I was diagnosed, I received a major dose of steroids, which put me on the right track. The doctor immediately put me on Rebif Rebidose, which I did for two years. It was awful. I had flu-like symptoms every day. I decided to try going without Rebif and was without medication for about four years. When I had my recent relapse, my doctor wanted me to go back on medication and gave me a choice between pills or infusions. I chose infusions, so now I’m on Ocrevus.

How do you manage your MS?
The biggest thing for me has been recognizing my limitations. When I’m working out, I work out according to fatigue. I may want to do 12 squats, but I’ll stop at five if my body gets tired and I start to lose form. If I need a nap, I’ll take a nap. If my friends are going out to happy hour, and I’d rather sit on the couch and watch TV, I’ve decided that’s OK. My body talks to me, and I’m much more tuned in now to what it’s saying.

What’s your biggest challenge?
One of the biggest difficulties I face is thinking too far into the future. I worry about having the support I need later in life. I’m an only child, and my mom is a single parent. She’s getting older. I’m not in a relationship, and I don’t have children. I have a friend with MS who is older and lives in a nursing home, and that scares me. I’m a very positive person, but if I start thinking about that, I get depressed. That’s my biggest challenge. It’s mental, not physical.

What’s the best thing you do to take care of yourself?
The biggest game-changer for me has been meditation. I do it every morning. It has done wonders for my stress level because it reminds me not to get caught up in things I can’t control.

What advice do you have for someone who’s newly diagnosed?

Grieve for a little while — then talk to everyone you can talk to. Because if you do, you’ll realize that there is life after MS. There is still so much you can do that you’re used to doing. Things might just look a little different.


For Angela Landeros, the biggest challenge has been to be kinder to herself and not feel bad about her limitations.

Angela Landeros
Age: 40
Location: Los Angeles, California
Occupation: Massage therapist
Type of MS: Relapsing-remitting
Year of diagnosis: 2012

How were you diagnosed?
In 2007, I had surgery for a labral tear to my left hip. After that, I couldn’t hold a flip-flop on my left foot because my toes were fatigued so quickly. Walking, in general, became more fatiguing. I couldn’t go far without developing a limp. I just blamed it on my surgery. Then, in 2012, I woke up one day and tried to hold a water bottle under the sink when my arm started shaking uncontrollably. I thought I’d pinched a nerve or something. That’s what finally got me to go to the doctor. I was working for a chiropractor at the time, and he said I needed an MRI. I did that and got a phone call from the doctor while I was at work. He said, “I’m really sorry, but it looks like you have multiple sclerosis.”

How has your disease progressed?
The tremor in my left arm has gotten better, but my left leg is the same. I have an ankle foot orthosis (AFO) device to help me walk and a walker/wheelchair that I can travel with — which is a huge deal. I never wanted to be that person with a disability, but now I’ve had to admit I’m that person. And that’s OK.

What are your current symptoms?
Besides my leg, which makes it difficult to get around, the symptoms I most deal with daily are fatigue and heat sensitivity. I have to be a lot more deliberate about planning what I do and when I do it. If I have to do something like water the lawn, I’ll do it in the morning or the evening when it’s cooler. I micromanage my schedule because that’s something I can control.

How has your treatment changed?
When I was first diagnosed, I went on Tysabri for two years and was very reliant on it. If I started having symptoms, I would call the doctor in a panic to see if I could have my infusion early. Then I started learning about inflammatory triggers, and I started eating an anti-inflammatory diet. When my symptoms started getting better, I told my neurologist I wanted to go without drugs. She was against it, but I believed I could do well naturally. I even wrote a book about it: “The Flog Journal: A Six-Month Food Journey for Those Who Want to Feel Amazing Every Day.” It’s not for everyone, but I have faith in what I’m doing, and it’s working for me.

How do you manage your MS?
At first, I called in sick a lot and stayed home from work. If I needed them, I would have steroid treatments at home. They would deliver a kit of Solu-Medrol, and I would spend a week at home with an IV in my arm. Now my diet is so strict that if I have a flare-up, it’s an accident — I ate something I shouldn’t have, I walked too far, I stayed in the heat too long. If that happens, CBD [cannabidiol] oil helps. And at the advice of my doctor, I’ll take a baby dose of Adderall to help me with cognitive fatigue when I need it.

What’s your biggest challenge?
The biggest challenge for me is being kinder to myself. I’ve always had really high expectations for myself, so I’ve always pushed myself really hard. But as I’ve grown older, I’ve realized that isn’t a good way to be. It’s how I cope. I push myself, but I’ve realized I need to admit I can’t do as much, and I need to not feel bad about that.

What’s the best thing you do to take care of yourself?
It’s definitely my diet. Wheat and soy are my two biggest triggers. Your everyday symptoms are never going to go away completely. Keeping a food journal and being deliberate about what I eat has helped me analyze and understand my body better.

What advice do you have for someone who’s newly diagnosed?
Pay attention to your body, and don’t ignore symptoms. What happened? Did it last an hour? Did it last 30 seconds? Did it last a week? Nothing is too small to analyze. Write it down. And if it feels important, take it to your doctor. That’s what they get paid for.

Terry Brisco learned to say “no” to give his body the rest it needs.

Terry Brisco
Age: 44
Location: Clarksburg, Maryland
Occupation: Actor and owner of a medical transport company
Type of MS: Relapsing-remitting
Year of diagnosis: 2014

How were you diagnosed?
When I was 36, I began experiencing tingling in my feet and hands. My doctor referred me to a neurologist. But of course, I didn’t go. Because that’s what men do. Once when I was jogging my legs gave out, and I had to crawl to the median. That’s when I decided to make the appointment. The first neurologist misdiagnosed my condition. A second neurologist identified spinal cord lesions and transverse myelitis that might lead to multiple sclerosis. A year later, I was officially diagnosed.

How has your disease progressed?
I believe the Swank diet (a strict, low-fat diet) slowed down the progression.

What are your current symptoms?
Fatigue, sensitivity to hot and cold temperatures.

How has your treatment changed?
My first treatment was Copaxone. I switched to Tecfidera and then Vumerity to better manage the symptoms.

How do you manage your MS?
Vumerity and the Swank diet, for the most part, though it’s very difficult to maintain. Instead of long hours driving a bus, I launched my own medical transport business and work as an actor.

What’s your biggest challenge?

Maintaining enough energy to do the things I need to do when I need to do them. Heat is extremely fatiguing and cold can make me shiver uncontrollably to the point it feels like my muscles are going to break through my bones. It’s terrifying.

What’s the best thing you do to take care of yourself?
Say that magic word “no.” Sometimes no matter who you are — husband, father, business owner — you have to say “no” to make sure you get the rest your body needs.

What advice do you have for someone newly diagnosed with MS?
Talk with someone who has MS. When I was diagnosed, I asked the doctor how long I had to live. I didn’t know it wasn’t a death sentence. It seemed like such an obscure thing. Learning more about MS — and the steps you can take to slow its progression — is the best thing you can do.

Sharon Dodge maintains an active lifestyle through running, cycling, hiking and canoeing.

Sharon Dodge
Age: 55
Location: Ewa Beach, Hawaii
Occupation: Retired teacher
Type of MS: Relapsing-remitting
Year of Diagnosis: 1996

How were you diagnosed?
We’re a military family, and we were living in Spain. I started having these weird buzzing sensations and numbness and tingling. My husband’s a naval aviator, so I was seeing the flight surgeon at the time. My father had died from complications of MS, and I was worried I had MS, too. He insisted it wasn’t MS and kept running different tests. One day he called and said, “Sharon, we’re putting you on a medical evacuation flight to Germany.” They sent me to Germany and did an MRI at 3:30 a.m., gave me a spinal tap and sat me in front of a neurologist. I’ll never forget the moment. My 2-year-old was on my lap. My husband was to my left. And the doctor told me, “Sharon, I’m so sorry to tell you: You have multiple sclerosis.”

How has your disease progressed?
I had a pretty good run until recently. Ten days before Christmas 2020 I was diagnosed with a very rare form of cancer called hidradenocarcinoma. I had three surgeries in three months, and my body couldn’t handle all the trauma. I’ve just been through the worst MS exacerbation of my life. I was numb from my waist down to my feet. I also felt this strange tightening, like a tourniquet wrapped around my kneecaps. It was horrible.

What are your current symptoms?
I have little bouts with numbness and tingling, and I’ve certainly had issues with fatigue. The numbness in my waist went away from my last exacerbation, but my feet are still numb. It doesn’t stop my legs and feet from moving; it’s just a weird feeling, like there’s cotton balls between my toes.

How has your treatment changed?
I started on Avonex and basically got the flu once a week. I would take it on Saturday night, so I could sit in church on Sunday and ask Jesus to help me out a little bit. I did that for probably three years and then switched to Copaxone. I got the best results from that. And if I ever had a flare-up, I would go in for three days of IV steroids. Now I’m drug-free. A study came out that said once you reach age 50, you’ve pretty much gotten all you’re going to get from disease-modifying therapies. So two years ago, I decided to go off Copaxone completely.

How do you manage your MS?
My husband and I have always lived a very active, healthy lifestyle. I’m very into running and cycling. Now that I’m an empty-nester, I’ve amped things up even more. I go paddling in my outrigger canoe, and I do a lot of hiking. I can’t just sit on the couch. It’s not who I am. I’m a mover. I have to keep moving. The alternative to me is giving in to this disease, which I watched my father do. I won’t do that.

What’s your biggest challenge?
The biggest obstacle for me is waking up exhausted every morning, even though I just slept for seven hours. That’s a challenge I face daily — the sheer guts and determination that it takes for me to get up and moving.

What’s the best thing you do to take care of yourself?
The best thing I do for myself is taking “me” time. I do yoga, breathing exercises and meditation. And twice a month, I get a massage. It’s not an enjoyable massage — it’s a trigger point massage, which is actually very painful — but it’s just so good for me in terms of helping me work through the numbness and tingling that I feel.

What advice do you have for someone who’s newly diagnosed?
When I was first diagnosed, I saw a Navy neurologist at Walter Reed who said to me, “You’ve got a little boy. I suggest you just have that one child and be happy with what you have because you’re going to have more than you can handle with this disease.” It was scary to think I wouldn’t have any more children.

After that, I met with a neurologist at Johns Hopkins and told him about that conversation. He looked at me and said, “If you want to have more kids, have more kids. You need to live your life like you don’t have a disease.” I’ve never forgotten that. It was the best advice I ever received.

Georgia Pollak started Culinary Explorers, a group that visits chefs around New York.

Georgia Pollak
Age: 69
Location: New York, New York
Occupation: Retired communications professional
Type of MS: Primary-progressive
Year of diagnosis: 2009

How were you diagnosed?
I had trouble with one leg, and nobody seemed to know what it was. I kept thinking it was arthritis, so I went to a doctor of physical medicine, and on the way there, I fell in the street. She took an X-ray of my hip and said, “You don’t have arthritis. I think you’ve got something neurological.” That triggered several months’ worth of tests to rule out different things. We did everything, including MRIs, and nothing was definitive. Finally, they did a spinal tap that showed abnormalities, which was the final indication that it probably was MS.

How has your disease progressed?
My progression is not a straight line. My nerves are like blinking Christmas tree lights. It’s very intermittent, but not like it is with relapsing-remitting MS.

I don’t have periods of remittance, but I have good years and bad years, good months and bad months, good weeks and bad weeks. One good thing is that your MS tends to level out as you get older, so I’m less frightened than I use to be. I used to think I’d spend the last 20 years of my life in a wheelchair, and I no longer feel like that is inevitable.

What are your current symptoms?
The biggest things are mobility issues, fatigue and some pain. I’ve had periods where my hands or arms were weak, but it’s mostly my legs. I have declined to the point where I’m using a walker.

How has your treatment changed?
The first neurologist I went to said there was nothing that could be done for me. The only thing he gave me was Nuvigil for my fatigue. I pushed hard to get on Ampyra, which speeds up your walking. I responded really well to that, then switched to an MS specialist. We stopped the Nuvigil, and he kept me on Ampyra, and he started me on intrathecal injections of methotrexate. I also took baclofen at night for spasticity and, occasionally, Lyrica for pain. I’ve since stopped the methotrexate and have been doing rituximab infusions, which have been very helpful. Because I had intestinal surgery and could no longer absorb time-released Ampyra, I also switched from that to a low dose of 4-aminopyridine.

How do you manage your MS?
For two years after my diagnosis, I was in denial. Then I heard through the National MS Society about Herb Karpatkin, a Hunter College professor of physical therapy. The first neurologist I saw told me physical therapy wouldn’t do anything for me. I started seeing Herb Karpatkin, who started me on a physical therapy journey that I’ve been on for over 10 years. I try to exercise every day. I walk a lot, and we have a gym in my building that I also use. I find the Egoscue method (a series of gentle exercises and stretches) especially helpful for balance and pain. I also switched from a general neurologist to an MS specialist in an MS clinic — the International MS Practice in NYC. About two years after my diagnosis, I went on disability. My job was very big and involved lots of travel, and I just couldn’t do it anymore. Now I do a lot of volunteer work, instead, which keeps me mentally active with a lot less stress.

What’s your biggest challenge?
Mobility has been very hard. I’ve resisted getting a scooter to keep myself exercising, but not being able to get around is very isolating. That was very hard for me in the beginning — not being able to join in with people when they do things like golfing, tennis or hiking. It’s very challenging to constantly be losing the ability to do the things you love. It’s a process of mourning. Every time I get a little bit more challenged physically, I have to experience that all over again.

What’s the best thing you do to take care of yourself?

Social involvement. I belong to a national organization called the Transition Network, which is for women over 50 — all of whom are in transition, whether it’s retirement or divorce or becoming a widow. It’s volunteer-run, and I’ve started several things for women in this group. I started a book club. I started something called Culinary Explorers, where we went all around New York and met chefs. It’s good to start things when you have MS because you can set them up on your own terms.

What advice do you have for someone who’s newly diagnosed?

Don’t ignore your illness. The best way to deal with it is to accept it and come to terms with it.

Gardening is a calming pastime for Yolanda Treiguts. She enjoys maintaining her patio garden.

Yolanda Treiguts
Age: 76
Location: Oakbrook Terrace, Illinois
Occupation: Retired legal secretary
Type of MS: Secondary-progressive
Year of diagnosis: 1978

How were you diagnosed?
I was a legal secretary and a paralegal, so I did a lot of typing, and my hands would just go numb. I had visual problems, too, and was very tired. I had a lot of tests done. They told me, “We really don’t have anything to tell you. We’re just going to have to see if you get worse.” They made no mention of MS. I later saw my medical records, and they had written in them, “Patient is a young, reasonably intelligent and active woman who we believe may have multiple sclerosis, but no need to inform until the situation worsens.” Well, things did get worse. And after going to doctor after doctor, a doctor I’d had since I was a kid finally said, “Yolanda, you have multiple sclerosis.”

How has your disease progressed?
When I started out, nobody would have known I had MS. They couldn’t see my numb fingers or my poor vision. Unfortunately, I have really progressed over the years. I went through a period where I couldn’t see any color and was blind in one eye, but my vision eventually returned. I was in pretty good shape until I had some blood clots in my lungs. That took me down. A couple of years ago, I had a stroke. Ever since then, my walking has gotten pretty bad. Now, you can visibly see that I’m affected by MS.

What are your current symptoms?
I lost and have never regained feeling in my hands, and I never had complete feeling in my legs. My legs have gotten much worse, and because of that, my walking is very bad. I have fatigue, and I have terrible bladder problems, although some of that might be just old age.

How has your treatment changed?
I didn’t get treatment until Betaseron came out because there was nothing to take. That was in 1993. I took that for 15 or 20 years until I developed antibodies to it. At that point, I was at the age where the newer therapies coming out would be of no avail to me. So now it’s really just about physical therapy and exercise, although I take vitamin D, which has been a big breakthrough in MS research. Where I live, we don’t get a lot of sunlight. So I think taking vitamin D helps.

How do you manage your MS?
I had to leave my job, so I’ve had to find other ways to keep active. That’s why I ended up getting involved in the National MS Society. I’ve been a support group leader for the Society for over 35 years, which has been really good for me. Also, I think attitude plays a huge role in how to deal with this disease. You have to count your blessings and focus on the things you can do instead of the things you can’t.

What’s your biggest challenge?
The biggest challenge for me right now is learning that I have to use my little scooter more often. My husband and I have taken some wonderful trips all over the world, and now when I plan our trips, I have to think more about accessibility issues. I never used to have to do that. But we’re constantly changing, and that’s OK. I don’t want to dwell on what I can’t do. I can still travel; I just have to do it differently.

What’s the best thing you do to take care of yourself?
Being grateful for how lucky I am. I try to start out each day as a new day, even if the day before was not such a great day.

What advice do you have for someone who’s newly diagnosed?
If there’s something not so positive in your life — a bad job, a bad marriage, whatever it is — you must find a way to avoid it, get rid of it or live with it. Don’t live a stressful life. It’s not worth it.

Matt Alderton is a writer and editor in Chicago.
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