Three prominent MS advocacy influencers speak to their experiences with multiple sclerosis and the most effective methods they use to manage their symptoms.
Founder and Host, RealTalk MS Podcast
To you, what is the biggest barrier to accessing multiple sclerosis treatments?
Cost. There’s plenty of evidence to show that using one of the FDA-approved MS medications can preserve quality of life by slowing disease progression and disability. It’s unconscionable that the median annual cost of the 21 MS medications approved for use in the United States is over $90,000, and nine of those medications carry an annual price tag of more than $100,000. When my wife was diagnosed with MS, there were just three approved MS medications on the market and the cost of her medication was about $9,000 a year. Today, the cost of that same medication is more than $85,000 a year. Living with MS can be stressful enough. There’s no need to add to that stress and anxiety by forcing people to make impossible choices between paying for their medication or buying food or paying their mortgage or rent. We must do a much better job of providing everyone living with MS with access to affordable medications.
What is your best advice for those who have been recently diagnosed with multiple sclerosis?
My best advice is to develop a treatment plan with your MS specialist or neurologist as soon as possible. Even if your symptoms are mild, the sooner you start on an MS medication, the better off you will be in the long run. My next best piece of advice is to make sure that when you’re doing your online research, you’re visiting trusted, credible information sources. The amount of misinformation you can find online is scary, and when it comes to your health, you want to be sure that the information you’re getting is reliable.
What effect do diet & exercise have on managing symptoms of multiple sclerosis?
There’s a growing body of evidence that shows that making lifestyle choices that include eating a healthy diet and getting regular exercise can have a positive impact on managing MS symptoms and improving your overall quality of life. When it comes to things that can make a difference in someone’s overall well-being, I know that a lot of people may think that they must wait around for the next pill, injection, or infusion. But there’s so much that they can do for themselves by making healthy lifestyle choices. Those benefits are real, they’re measurable, and they can’t be overstated.
How crucial is cognitive stimulation to living well with multiple sclerosis?
Everyone benefits from cognitive stimulation. I believe that it’s crucial to living well, whether you have MS or not.
What are the most promising changes you have seen in the past couple of years regarding multiple sclerosis treatments?
One of the most promising changes regarding MS treatments that I continue to see is the growing number of MS medications that are available. MS can affect every person differently, and everyone doesn’t respond to the same medication in the same way. Having a wide range of available therapies makes it easier and much more likely that you and your neurologist will find the optimal treatment for you. Another very promising change that I’ve seen is that MS treatments are no longer limited to pharmaceutical interventions. While MS medications should form the foundation of a treatment plan, we also know that doing things like quitting smoking, eating a healthy diet, and getting regular exercise can all play a part in that treatment plan.
Founder and Writer, My New Normals
As an influential multiple sclerosis advocate, what do you wish more people knew about MS?
There are different types of multiple sclerosis: relapsing remitting, secondary progressive, and primary progressive. Each have different levels of disability. Most associate MS with someone who has a severe form of the disease, like a person using a wheelchair. However, the majority of people with MS have a disability or symptoms that are not obvious and never reach the advanced level.
For you, why is it important for those living with multiple sclerosis to seek support and reassurance in their journey?
Isolation is common for people with MS. Fatigue is a major and widely shared symptom. Trying to keep up with a fast-paced society can be very hard. Because of this, a lot of time is spent at home or alone. Also, chances are that people with MS do not know anyone else who has the disease. The ability to be around individuals who understand what you are going through is very important. Support groups, in-person or online, give you an opportunity to learn tips and to vent anger or frustration. They sympathize when you have to move slower, take breaks, or speak with a slur.
How has meditation – or boarding your “paper airplane” – helped your experience with multiple sclerosis?
When I was first diagnosed, I use to run at a local park. Then I lost the ability to use my legs when the disease progressed. My lifestyle become more stationary. I still wanted to go places, but getting around became hard. So, I began a new passion — reading. I love it. When I read, I can go anywhere. I learn so much about different times and people in history. At one point, I wasn’t able to turn the pages in the book anymore. My fine motor skills began to fail. So, my husband got me an e-reader. I use it every day. This is my form of meditation. Sometimes, when I am reading and someone walks into the room and talks to me, I don’t even hear them because I’m so into the story. The current book I’m reading is about meditation. I’m trying some of the techniques now. I think I like it. The chanting calms me. It takes a lot a practice. Hopefully I will stick with it.
What advice would you give to someone recently diagnosed with multiple sclerosis?
Contact any local MS group. If there are none in your area, communicate with some online. There are a lot of resources to help you handle any present or future issues you may encounter. These groups do a great job at maintaining up-to-date records of all the current sources of aid, including names of local neurologists specializing in multiple sclerosis, help finding jobs or paying bills, and school financial aid.
Also, once you find a doctor, take control of your care. Don’t allow the neurologist to make the decisions for you. Do your homework and go to each appointment with questions. Expect answers. If you are not satisfied with the treatment you are receiving, find another doctor. You may have to go through a few before you locate a suitable match.
What tools have helped you cope with the immensely painful physical and emotional symptoms that often accompany MS?
The computer. I was diagnosed in 2000. No one I knew had a smartphone. There was no social media. If I needed help or just wanted to talk to someone, it was a challenge. Today, help is at your fingertips. I see some of my doctors online with video chat. I contact my local pharmacy online. Support groups, friends, and family are all accessible through the computer. It’s beautiful.
Founder and Writer, Staying Healthy With MS
What has been the best resource or tool that has helped you navigate MS?
Definitely the Overcoming MS (OMS) Program and Instagram. OMS has enabled me to create a really firm holistic foundation for managing MS, which has been invaluable. Instagram has also been amazing for connecting with so many people around the world with MS.
What effect has nutrition had on your symptoms and experience with MS?
Eating a plant-based diet has been a game-changer and helped me heal a lot of the damage I was left with after my diagnosis. It’s given me so much hope and happiness that I never thought I’d experience when I was diagnosed.
When I got out of the hospital after diagnosis, I had a walking stick and prism glasses as I had double vision and nystagmus. My speech was slurred, and I had muscle spasms and “freezing episodes” where my whole body would stiffen and stop me in my tracks, which happened several times a day. I had little coordination, which was incredibly frustrating, and cognitively I was a shadow of myself with brain fog and memory problems. I had heat intolerance, cold intolerance, a tight band around my middle, muscle weakness, and numbness from the waist down as well as in my forearms and hands. The fatigue was so deep and overwhelming. I felt like things couldn’t possibly get any worse.
But, little by little, my symptoms slowly faded, and I began to feel like myself again. It’s been amazing! Not to mention, eating this way helps me feel more energized, clear-headed, and happier. It’s really allowed me to take control of something I initially thought I had no control over, and that’s been really empowering.
Understanding MS can be a daunting and confusing endeavor. What resources do you recommend to someone newly diagnosed with MS?
- The Overcoming MS website, overcomingms.org
- The “Overcoming Multiple Sclerosis” book by Professor George Jelinek
- The “Recovering from Multiple Sclerosis”
- Your national MS organization — a great place with up-to-date information you can trust. Register and they’ll keep in touch with information and supportive resources
- Instagram, to connect and follow others
- Dr Jo Dispenza’s amazing books on mind over matter
- My blog and Instagram — stayinghealthywithms.com and @stayinghealthywithms
As a mom, what advice do you have for parents living with MS?
Support is literally everything! It’s so essential to you, your partner, and your baby’s health and happiness to have supportive family around that can help you so you don’t burn out.
Symptoms will flare initially, but don’t panic; it’ll pass. When you eventually get more sleep as baby grows, it gets easier. Rest when the baby sleeps and do dishes, cooking, and other chores when the baby is awake. This one is key! Also, meal prep as much as possible and stock up your freezer when you are pregnant. Consider a meal delivery service or fruit & vegetable delivery service postpartum so you don’t have to think about meals and healthy food. Do your supermarket shopping online.
Talk to your partner about how you envision postpartum as much as possible before baby arrives, so you are on the same page with things during the chaos of baby screams, big emotions, dishes, and dirty diapers. Be flexible and adaptable and have a lot of compassion for yourself, as you can envision it being perfect, but things may not go as planned. Just gently pivot when you need to and don’t let it steal your happiness if something challenging happens.
Have a fun routine to look forward to every day like putting baby in a carrier or stroller and getting out in the sun for a walk along the beach or to your local coffee shop. Remember, everything is a phase and eventually passes. It gets easier. I promise. It goes fast; try to relax and enjoy!
How has exercise improved your symptoms, and how do you integrate exercise into your life?
Exercise has been everything for improving my symptoms. When I was diagnosed, I exercised every day, beginning with really simple things I could do lying in bed. Then I progressed to being lowered to the floor to do simple pilates-type exercises, and then I went to the rehab gym. Little by little, I built my strength, and soon enough I was up on my feet and walking again.
Since then, I’ve walked almost daily out in the sun listening to upbeat music along the way, and it really carried me through that difficult time in my life. I very much doubt I would have had such a great recovery had I not walked every day.
When I don’t exercise, I can feel my balance is worse and my muscles aren’t as strong. Now that I’m a mom, it’s definitely more challenging but not impossible. It is really easy to let fatigue and rest take over, but getting out for a walk every few days is essential.