Author: books

By Ann Marie Johnson, as told to Shishira Sreenivas

I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) on New Year’s Eve in 2002. I was 32. At that time, I had just started embarking on my career in Brooklyn, NY. I just graduated from grad school and had started my new job, and I was an independent woman. I was always on the move. It’s funny because people often could hear me before they could see me. I’m a petite woman that used to wear 5-inch stilettos. Any given day, you could hear the clackity-clack as I was coming down the street or hallway. Life was pretty good.

One particular day while I was at work, I noticed that the pen I was using to write my notes with kept falling out of my hands. At first, I was like, OK, what’s going on here? But it kept happening. I started feeling these funny feelings inside of my body. My supervisor was with me that day, so I said to her, “Look, I don’t feel right. Something is not right.” She let me go home and told me to finish up later.

When I don’t feel good, I make a cup of tea. So I did that and went to sleep. When I woke up, the funny feelings had shifted to waist down. It felt like pins and needles when your hand falls asleep. I also had numbness and my legs didn’t move. I fell to the floor when I tried to move.

Thankfully my roommate came to help and took me to the ER. There, I spoke to the neurologist. Fast forward a little. After a series of exams, tests, spinal tap, EKG, and an extended trip to the hospital right before Thanksgiving, more than 2 weeks later, after more workup and just a few days after my birthday, I was diagnosed with MS.

I didn’t know much about it at the time. All I knew was Montel Williams and Richard Pryor had it. And my thoughts were: What does that mean to me? I was just a poor girl from Brooklyn, NY. I don’t have any money, I’m not married, will anybody ever want me? Would I be able to have kids? Will I be able to go back to work? These were the things swirling in my head.

Use Assistive Devices and Find What Works for You

As I learned to live with MS, I was also learning what that was going to mean for me. As in what does it mean for my walking? For that I have canes. I use a folding cane, and I have one with wood carving.

In terms of the emotional aspect of this illness, I figured if I’m going to have mobility devices, I’m going to look good with it. So I got a leopard cane to match my leopard print shoes. For the holidays, I have a black and white cane. I also have my African queen cane. So instead of people hearing me from the clack-clack-clack of my shoes, now they heard me because of the clack-clack-clack of my cane.

When I have good days, the cane stays in the car. On days when it’s a little challenging, I’ll take it out.

Strategize and Plan Your Day Ahead of Time

Different symptoms are definitely going to give you reminders that you have MS. And then depending on what you’re doing in your day, you have to strategize. Because of my fatigue, I don’t really function that well early in the morning. Anybody that knows me, like my friends, they know, “Do not call Ann Marie to go anywhere in the morning!” Because I’m like a wet noodle. I am at my best in the afternoon.

I also started to write everything down, especially at the doctor’s office, because there was no way I was able to remember everything and notify the doctor. I started to write about things like how I feel or what I ate. I would write about the time and about my temperature. From all of that, I was able to see patterns. Using that, I was able to modify certain things in my life.

For example, I work long hours. I found that it’s best for me to eat small meals because if I have a big breakfast and then have a big lunch, it exacerbates my fatigue.  If I have small meals stretched out during the course of my day, it maintains my energy level to a point where I can function, and I’m not nodding off at work.

MS causes me to have frequent urination. I have to be mindful of how I get my fluids. I know I can’t get that cup of coffee in the morning and then travel to get to my destination because I won’t make it. So instead of nursing a drink, I try to drink things in one setting. That way, when it’s time to dispel it, I do it in one shot.

But again, these were changes I was able to make when I started writing and started seeing the patterns. I was able to make real change in my life. However, I’m still learning.

Join a Support Group

The first couple of years were really spent on trying to figure out me and what MS is going to look like for me because everybody’s MS is different. I was looking for information, and I contacted the National MS Society. They helped me get into support groups. Through this, I started to facilitate my own groups. I like to say I took the “I” from chronic illness and added “We,” and made it wellness.

I found others like me. I could hear others’ stories about how they are coping or exchange little cheat sheets. Find out where to get canes from, or what drugstores have really good canes. Find social media groups or discuss what different diets people are using.

It gave me the opportunity to discuss or see how this guy works with this or that person and to get tips on how to live with MS. But also, I got to hear about people who travel, or get a doctorate, or get a raise, get married, or have babies. Just regular life events for people who just happen to have MS. That is the greatest level of support, and that really sparked wellness. It made me feel better. And when you feel better, you do better.

By Mariska Breland, as told to Camille Noe Pagán

I was diagnosed with multiple sclerosis in 2002, but I’d had symptoms for at least 3 years before that. I’m 45 now, but I was just 27 at the time. Most of my symptoms, like numb fingers or feet, never lasted long and were easy to dismiss. But that year, I got a weird pins and needles sensation in my left thigh, which my doctor thought was shingles.

Then I moved to Washington, DC, to work as a freelance video and event producer. Soon after I arrived, my vision got weird. I couldn’t really focus, and after a few days, I realized that every time I looked left I was seeing double. I went to see an ophthalmologist, who told me point-blank that I probably had MS. When I started crying, she said in a rude voice, “It isn’t fatal.”

It was devastating. But I went to see another doctor, a neuro-ophthalmologist who was really wonderful. She said to me, “Listen, Mariska, I see a lot of people with MS, and the vast majority are still walking years and years after their diagnosis.” As a young woman, that’s exactly what I needed to hear. Losing mobility was my biggest fear, and I realized it was time to take action and do whatever I could to keep that from happening. The neuro-ophthalmologist referred me to Georgetown, where I was diagnosed with relapsing-remitting multiple sclerosis (RRMS).

It wasn’t easy to be open at first. I was interviewing for a job after I was diagnosed, and I really needed better insurance than I had at the time. I recall asking the owner of the company specifically what insurance they offered so that I could see if the MS drug my doctor wanted me to take was on that plan. The employer said “Well, I can’t ask you about your health, but I just want to make sure we’re not buying a lame horse.” He couldn’t legally ask me that, but I needed the insurance, so I was quiet about my MS after that.

Outside of that, it was easier to just be open about what I was going through. I had visible bruising from medication I was taking. I wasn’t drinking when I went out with friends, either. It always seemed easiest to me to just say why.

What was harder for me, at least right after I was diagnosed, was being around other people with MS. I didn’t want to hear about or notice their symptoms. I think I was afraid, deep down, that I’d develop the same problems they were having. That would change for me soon enough.

After my diagnosis, I started practicing yoga right away. I’d read that it was good for MS, and I felt better as soon as I started doing it. Back then, doctors told you not to push yourself or exercise too hard because it made MS worse. Now we know that’s not true. You have to be careful about what you do, of course. But regular exercise can help manage and even ward off some symptoms. And it’s OK to push yourself.

After doing yoga for a while, I started doing Pilates to get stronger and decided to get certified as an instructor in 2005. I’ll be honest: one of the things that I loved was that I got really strong and fit and people would compliment me about that. It made me feel less like my body was broken.

But that’s not why I stuck with it. Around 2008, I started having MS-related mobility issues. Pilates helped a lot. As I trained, I began to realize that you can train to help your brain and body create ways to compensate for disabilities through things like repetition and sensory feedback. I knew I had to show other people with MS and neurological conditions that this could help.

I started taking courses to learn the science of neurological conditions. In 2013, I created the Pilates for Neurological Conditions training program. Around that time, my business partner and I opened The Neuro Studio. We offer disease-specific trainings, programs for specific symptoms, and continuing education for fitness instructors. Since then, I’ve taught more than 700 instructors how to teach people with MS, Parkinson’s, and other neurological conditions.

Even today, many doctors don’t talk about the role of exercise in preventing MS-related symptoms and disability. Very few MS patients get physical therapy. If they do, it’s usually short and simple. Exercise isn’t a magic bullet. But by working on balance and strength over time, you can make a difference in symptoms like leg weakness, foot drop, balance issues, and more.

I call myself a reluctant advocate. I went from not wanting to be around people with MS to knowing hundreds of them. My life’s work is helping people with neurological disabilities.

Mariska Breland, a nationally certified Pilates teacher, is co-owner of TheNeuroStudio.com and the researcher and creator of Pilates for Neurological Conditions.

By Kathleen Costello, MS, as told to Rachel Reiff Ellis

Drugs don’t work in people who don’t take them. It sounds over-simplified, but it’s true. And it’s not an MS-specific problem — it’s a challenge in any ongoing condition. The World Health Organization has estimated that only 50% of people with a persistent illness continue long-term therapy. This is related to hundreds of billions of dollars a year in additional health care costs.

With MS, when you don’t stay with your treatment, there’s the chance that the disease will continue unchecked. That means your immune system can go on causing inflammation and damage in your central nervous system. And “time is brain”: If there’s damage, it can be permanent — you may not get that function back.

Research has shown over and over again that MS disease-modifying medications limit new clinical activity or relapses. They also slow progression and lessen the amount of new damage in the central nervous system. In short, not treating your condition can equal more disease activity.

Studies show that the No. 1 reason people with MS don’t keep up with their medication is that they simply forget to take it. There’s a lot going on in life that can impact your ability to stick with your treatment.

In addition to remembering to take your medication, it’s important to believe that it will help you. A number of recent studies have shown that this buy-in is key. When you believe it will be effective, it motivates you to stick to it.

Other things that may affect your ability to stay on your medicine are side effects and cost. What’s the actual out-of-pocket amount? Is it too much to manage? Sometimes the expense of medication leads people to either ration theirs or not take it at all.

You can also have difficulty when you don’t keep up with other types of MS treatment, such as physical or occupational therapy. These can help you get stronger and have better endurance, mobility, and flexibility. And regular physical activity can help support mental health and lessen fatigue. But without doing these things consistently, you won’t get all the benefits.

There have probably been more than 40,000 papers written on the topic of people following or not following their treatment plans. One thing we’ve found is that proactive follow-up from providers is helpful in getting people to start and continue it. Results are better when providers simply check in and ask questions like, “Are you missing any doses of your medication?” or “Are you having any side effects? If so, what are they?”

It’s also important that you and your provider work together. Our job as providers is to explain and ensure that you understand the benefits of your medicine and any side effects and risks. At the same time, it’s important for us to understand what’s important to you and what your concerns may be. Then that information can be used to make a shared decision. When we have shared goals and a shared decision-making process, we have the best chance for success.

There are also practical things you can do to help you stay the course. Set reminders on your phone that tell you when it’s time for your medication. Engage loved ones to help you but not nag you. Have them check in to ask if you’ve taken it. If not, what they can do to help you remember? The best way to stick to your plan is to address these things before they happen.

Most importantly, take ownership of your health. Make sure you understand why your treatments are important. Don’t be afraid to voice your concerns before you get started. Putting you in the driver’s seat is probably the most important thing we can do as providers to help you maintain your therapy and manage your MS.

By Darbi Haynes-Lawrence, PhD, as told to Evan Starkman

It’s been 13 years since my neurologist diagnosed me with relapsing-remitting MS, and I still forget that I’m disabled a lot. I’m 47, but in my brain I’m still a college track athlete who ran marathons on the weekends.

I’ve always been a big goal-oriented person. I got my doctorate by the time I was 30, and my dream has always been to be a dean of students. I can’t now. I have to be realistic, and that’s meant modifying my life goals. It can be frustrating.

Sometimes I feel very much like a fraud, in that I could be doing so much more if I didn’t have MS. It’s a daily battle of feeling like I’m not doing enough. Every day when I need to rest for just a little bit, one part of my brain is like: “No. You are so lazy. Look at these other people who can do it without lying down for a rest.”

Sometimes I give myself a few minutes to be in a puddle of pity. But not for long. I let the negative thought come through. I reframe it. Then I say it out loud: “I am allowed to rest right now. Disabled or not, I’m tired and I’m not going to be any good to anyone if I’m not rested.” Then I allow myself that time, and off we go. It’s rare if I take a whole day off.

Prepare to Be Doubted

A number of people have told me, “You don’t look disabled. Why are you using that disabled parking spot?” And it’s like, “Well, give me a second to get out of my car and pull my wheelchair out, and let me show you.”

The doubt that people had still haunts me. It was a real attack to my self-esteem.

Sometimes health conditions aren’t visibly obvious right away. They’re “hidden” physically. But the condition is there all the same.

Question Your Doctors

Years before I got diagnosed with MS, I was getting completely bizarre symptoms. First the roof of my mouth burned. It was absolutely on fire. Then the right side of my face was sagging. And then it just progressed from there, to the whole right side of my body becoming very weak.

In my early 20s, I remember beginning to stumble a lot and thinking, “Oh, gosh, this is what happens to you when you go from being a college athlete to only working out once or twice a week.”

I was also having a difficult time remembering words. It is horrific going from a very large vocabulary to just struggling for the right word at times. 

After I had my daughter at 30, my strength began to decline quite a bit. Over the next few years, I started choking on my food because I couldn’t chew and swallow well. I also had trouble seeing out of my right eye.

My doctors said: “You’re a young professional woman. You’ve got a small child. You and your husband have a business. You’re just stressed.” Women often get told “it’s just stress.”

One doctor told me I was crazy. He was my general physician, and he damaged the trust that I have in myself. He made me doubt everything I was experiencing. I had assumed he would treat me well and be the leader of my medical care team. But it took a lot of emotional battering from this man for me to realize that he was a really poor choice for that role. Eventually I fired him. I wish I would have believed myself that I wasn’t crazy.

It was my dentist who got me on the right track after I told him that my lips were swollen and the roof of my mouth was burning. Those could be signs of a neurological health condition, he told me. And that’s what prompted me to see the neurologist who finally diagnosed me with relapsing-remitting MS. 

So, I would recommend that you question and investigate your health care team. And don’t be afraid to fire your doctor. Never let them belittle you just because they have the “Dr.” in front of their name. Keep asking questions. Keep searching for answers. And don’t give up.

Your Family May Need Help Adjusting

When I finally got diagnosed with MS at the age of 34, I was relieved to have a name for what I was experiencing. I was also relieved that there was a plan of treatment. I could keep going. My career wasn’t over. I was going to be able to be there for my daughter, who was 4 at the time.

The rest of my family was terrified. They all grieved the diagnosis, even though I didn’t. I thought: “How do I explain multiple sclerosis to my daughter? How do I explain it to my family? How do we keep moving forward?” I wasn’t finding the information that I was looking for as a mom.

Eventually I created the resource I didn’t have back then. I wrote A Conversation About Multiple Sclerosis, my first of three children’s books for the MS Foundation. I hope that it empowers families.

By Caroline Craven, as told to Hallie Levine

I learned I had MS almost 20 years ago, in 2001. I was only 35, yet I couldn’t walk or see without assistance.  Today, I’m thriving. It’s so important for patients with MS to know that their diagnosis is not a death sentence. With the proper treatments, the disease can be controlled, and you can continue to live your best life.

After my MS diagnosis, I had to reinvent my life. I had to give up my marketing career — I couldn’t work in an office 8 to 10 hours a day with my sensory overload and fatigue. Before MS, I was a whitewater kayaker, mountain biker, and rock climber. Suddenly, I found myself so exhausted I could barely walk from my car to the parking lot.

I enrolled in a 3-year, double-blind study at the University of Southern California for a T-cell vaccine.  After the study, I was told I was on the placebo. But since I was doing better than most and definitely better than when I was first diagnosed, my neurologist joked that I should be a poster child for MS. I took her advice literally: I became a certified life coach and created a blog, GirlwithMS.com, to provide helpful information on how to live better with MS, including recipes, life hacks, and resources.

Why There’s Still a Stigma

It’s actually gotten better over the last decade, especially among medical providers who better understand what it’s like to live with MS. They realize now that treatment for MS involves more than just taking a pill or getting a shot. In order to thrive, people with MS need to learn life skills and get community support. You don’t really know what it’s like to live with MS unless you walk in someone’s shoes. Some of us are relatively physical and able to stay active, while others need wheelchairs.

Unfortunately, the general public still doesn’t know much about MS. People confuse it with muscular dystrophy, for example — one of the questions I get asked a lot is, ”Are you part of Jerry’s Kids?” One reason that it’s tough to understand is because there are so many unknowns about the course of MS. When you first get your diagnosis, you have no idea if your illness will be invisible to others, you’ll lose your coordination, or if you’ll be confined to a wheelchair.  

Even when people know what it is, they often have a romanticized view of it. They think of celebrities like Selma Blair. But the public doesn’t see the part where those people have trouble walking from the parking lot into a store, or the sideways glances they get when they use their cane.

Challenging Misconceptions

The best way to push back against these sorts of misconceptions is to be straightforward with those around you. As an example, one of my biggest problems is sensory overload. Imagine standing in a room with strobe lights and sound blasting. That’s how I often feel when I’m in a busy environment or interacting with others. I tell folks that my MS is like a battery that I need to recharge often. When I get too tired, I need to take a time out and lie down in quiet to cut down on the sensory overload. When I explain it like this, it helps people understand what it’s like for me.

In another example, many people with MS are sensitive to temperature. It may not seem that hot out to others, but it may cause you to feel tired, make your vision blurry, and give you trouble with your balance. It’s important for your family, employers, and friends to know things like that. You may have to tell them more than once so they can understand. Don’t be afraid to do that, and to ask for help when you need it.

How You Can Advocate for Yourself

The first step is to find a doctor you feel completely comfortable with. Once you’ve found your doctor, keep a running list of questions and notes to run by them when you have an office visit. So many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or we’ve had a very cruddy week.

I also recommend keeping up with the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). This way, you can discuss promising new treatments with your doctor. You also need to make sure they know about and are on board with any supplements or complimentary treatments you use.

Change Your Focus for Your Best Life

Now, as a person and expert living with MS, my work takes me across the country, consulting and speaking to help others with the disease live better. It brings back memories of my early career, when I worked with startup companies, and it’s exciting and inspiring. The bottom line is that MS is a random, progressive disease. We, as people with MS, can’t control where it takes us. But we can focus on how to live our lives better.