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Nurse Kim Asks...

Relapsing MS can be intimidating, especially when it threatens to limit our mental and physical abilities. Nobody wants to give up their independence, so it’s important to find ways to combat disease activity. What steps have you taken to stay mentally and physically fit?

Stewart Answers...

Maintaining your abilities with relapsing MS—what minimizing disease activity means to me

To me, minimizing disease activity is about quality of life and personal empowerment. I believe we each have an opportunity to fight to minimize the disease’s activity and hold the ground we still have. Some of the resources we have available are technological and pharmaceutical, but I would argue that a critical piece is individual action, attitude and determination. Wherever you are, do all that you can to stay there or get to a better place.

After being hospitalized for a flare-up, I spent a lot of quality time with occupational and physical therapists. One day, frustrated with my perceived lack of progress, I commented that I felt like I was a toddler learning how to walk again. The therapist replied, “that’s exactly what you’re doing,” and remarked that I was rewiring my brain. I know that’s overly simplistic, but it made a lot of sense. As I got better at controlling my body, I started trying to find ways to work those muscles and make those movements that had previously been difficult. 

It can be difficult to fence off a specific time every day to exercise, but working small exercises in during the day is easier than you might think if you’re creative. On days that you feel good, you can park a space or two beyond the area reserved for people with disabilities and walk a little farther. Shopping carts make great supports to aid in walking.

I’ve also kept every exercise sheet that I’ve received from a physical therapist or occupational therapist, as well as the resistance bands and therapy putty they gave me. That gives me a ready reference for exercises I can continue to do to reinforce the progress I’ve made. When traveling, therapy bands take up no space and therapy putty, when packaged in a freezer bag, easily fits in my luggage. The same is true for the workplace. I’ve been known to do exercises with a resistance band attached to my desk’s leg. I also keep a grip ball in my desk to use for both grip strength and hand/eye coordination.

The mind needs to be exercised as well. After a few tests to determine how parts of my brain were functioning, the doctor recommended a number of strategies, including “continued mental stimulation.” I finally have an excuse to play games on my smartphone. There are a variety of apps specifically designed to exercise the brain, but there are also more traditional games like crossword puzzles, trivia games, and logic games such as Sudoku. I also suspect that choosing to read a book instead of watching TV can make a difference. Try a little of everything and find what works best for you. 

See What Connie Says
Connie Answers...

Maintaining your abilities with relapsing MS—what minimizing disease activity means to me

When you are given a multiple sclerosis diagnosis, one of the first things that you think is, “what will happen to me in the future?” I remember thinking I was never going to be able to have a child, I was going to have to stop working, I was going to have to use a wheelchair, and the scariest—that I was going to die. Many of these concerns were due to me not knowing enough about relapsing MS to make educated assumptions. Many of them were just the fear of this new diagnosis. This motivated me to jump right into researching this disease and how to stop it.

I quickly found out that there was no stopping it. But there were certainly things I could do that might decrease its effects.

My doctor explained to me that I should start on a disease-modifying medication as soon as possible. There are quite a few more disease-modifying therapy options now than there were when I was diagnosed. Do your homework, including talking with your healthcare team about what option is the best for you.

Exercise, good nutrition and generally taking care of yourself are important for anyone. After consulting with my healthcare team, I started an exercise routine to help me to stay strong and mobile. They also told me about the importance of a healthy diet with all of the recommended food groups. I know if I eat foods that are rich or fatty, I feel more tired, my gait is a bit more unsteady and I have more cognitive fog. A diet rich in fruits, vegetables, and healthy proteins and grains helps me feel much better.

I’ve found that my mind needs exercise as well. Chatting with others, reading, and doing crossword puzzles are a few of the ways I like to keep my brain active. Staying as positive as I can is also an important “exercise” for my mind and my body. Sometimes it’s hard, but I’ve found it is one of the most important things I’ve learned. I like to surround myself with other positive people. Enjoy life and laugh often.

Since relapsing MS is going to be your lifetime traveling partner, you have to make the ride as enjoyable as you can. Ensuring good mental and physical health will help you to live longer and fuller. So buckle up, turn up the music, take the wheel, and enjoy the view.

See What Stewart Says

Nurse Kim Sums It Up

As you can see, there are several ways you can go about taking care of yourself and maintaining your overall health. First and foremost, have a chat with your neurologist about your current medication. You want to make sure you're on the right treatment for you. Physical and mental workouts can also be helpful, and they don’t even require a gym. You can keep a resistance band at your desk, like Stewart, or ask your healthcare team about how to start an exercise routine, like Connie. Everyone has their own way of staying healthy, so find what works for you. Download a new game on your phone, go for a short walk, or have a puzzle night with your family. Let us know in the comments: how do you stay sharp in body and mind?

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