Meet - Cathy Chester

North Carolina, USA

When were you diagnosed with MS? 1986

What type of MS do you have? Relapsing-Remitting MS (RRMS)

possibly Secondary Progressive MS (SPMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

I was diagnosed with MS in 1986, before there were any FDA-approved MS medications or the internet! I was 27 years old and working in Manhattan at a job I loved, living in a charming apartment and loving my life. However, I couldn't ignore the symptoms I was experiencing. So I went to a neurologist, who after a spinal tap and CAT Scan (MRIs weren't widely used yet) I was diagnosed with MS. I went for a 2nd opinion in New York City and MS was confirmed.

I was actually relieved to know what was causing my symptoms, yet I had no way to find others living with the same disease. At the advice of my doctor, I gave up my job, apartment and moved home with my parents. He also advised me to rest as much as possible, call him if I had an exacerbation and he'd prescribe steroids to battle my symptoms. Let me tell you, it was a dark and scary time.

I refused to sit still, so I took action by leading an MS support group, writing Letters to the newspaper editor, and sending articles about MS to advocate for our community. I've been advocating ever since. After 37 years, I still enjoy being an advocate. Because, I know my knowledge and experience will help others feel less alone and more empowered on their journey with this crazy disease.

I've tried to live my life as best as possible within my abilities. There are dark and bright days. I won't sugarcoat this disease. However, I do my best to take it all one day at a time. For me, this works best.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

My MS symptoms include numbness, weakness, and balance problems in my legs, fatigue, cognitive challenges, bladder and bowel dysfunction, partial complex seizures, as well as tinnitus.

Sessions of physical therapy address issues with walking, for fatigue I rest when needed, and as far as my cognitive issues, I'm constantly reading, and doing crossword puzzles to keep my brain active. For my bladder and bowel issues, I've gone to a pelvic floor therapist while removing gluten, sugar, and dairy from my diet. The seizures are controlled by medication and my Tinnitus has not been addressed yet.

#3: Who/What has been your most important support system?

I was dating my boyfriend (now husband) when I was diagnosed. This year will be our 35th wedding anniversary! Our son is 30 years old. Together they are my greatest cheerleaders and devoted advocates, helping me when needed. They provide unconditional love. I am grateful for them every single day.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I use a cane when needed.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I am naturally a positive person, always looking for silver linings even in the darkest situation. I've kept it up by surrounding myself with trusted friends and family. I also enjoy meditation, practicing mindfulness, and keeping a gratitude journal. This all helps me stay positive.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

I always tell newly diagnosed individuals to trust their instinct to be their guide. If something doesn't feel right, believe it and move on. Particularly with your medical team. Keep hope in your heart that better days are ahead and lean into the MS community who are always there for you, whenever needed.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

Over a decade ago, I started my blog. You can find it at AnEmpoweredSpirit.com, which remains my platform for serving as a consultant, speaker, and writer. My mission is to empower, inspire, and educate individuals within the Multiple Sclerosis (MS) community to live fulfilling lives to the best of their abilities.

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Meet - Kathy Chester

California, USA

When were you diagnosed with MS? 2000

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

I was diagnosed with Multiple Sclerosis (MS) over 20 years ago. Physical fitness has always been a significant aspect of my life. I became an aerobics and boot camp coach and later went on to manage various fitness studios. In 2015, I founded Disrupt Fitness Gym, a program that combines circuit and interval training to create a highly effective workout routine. My MS symptoms initially presented as numbness in my hands and feet, migraines, and cognitive difficulties. Throughout the years, I have undergone several treatments and disease-modifying therapies (DMTs), including Avonex, steroids, chemotherapy, Tysabri, and currently Ocrevus. These experiences have reinforced my conviction that exercise and physical activity are essential for optimal health, strength, and mobility.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

My MS symptoms include Optic Neuritis, Drop Foot, Bladder Issues, Fibromyalgia, Numbness in Hands and Feet, Cognitive Issues, and Migraines.

#3: Who/What has been your most important support system?

As the years have gone by, I believe our support systems change throughout the years. Our parent's age, sometimes we move to different geographic locations, and our family dynamics change. With that beings said, I am truly grateful for my husband and close friends who have supported me through the years.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I have a cane that I only need to use on a limited basis, due to my exercise program. I also use an AFO for drop foot. But, I truly believe exercise and movement help hold off the extreme adverse effects of this disease.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

Faith plays a pivotal role in my life, and I heavily rely on it. My daily routine consists of prayer, Bible plans, and devotionals, which keep me in good spirits. Additionally, I exercise daily as well as, I offer a Movement and Exercise Program for MSer's called Disrupt, Move and Transform (DMAT) which is part of my MS Disrupted Community. I also try to get a massage at least once a Month.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

My choice to become physically active following my diagnosis was a life-changing decision that literally save my life. When most individuals are newly diagnosed, they are given a glossy pamphlet that advises them to conserve their energy, take it easy, and guess what? They usually end up in a wheelchair in 5 years. However, I refused to accept this as my fate and made a conscious decision to "Run" the disease out of me by engaging in running and fully immersing myself in movement, fitness, and exercise. My guidance to those who are recently diagnosed is to keep MOVING and never STOP!

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

Yes! I used to own and operate a fitness studio called Disrupt Fitness in Berkley, MI which I had to close during the pandemic. During that time I decided to shift my fitness training efforts and I began focusing on MS'ers and the Autoimmune population. I developed the DMAT Fitness Training Program and the MS Disrupted Community. Helping those with MS become stronger has become my life's mission. I currently offer One on One Personal Training as well as, a Zoom Group Fitness Training. In 2022 I started a podcast called Move or Lose It - a Podcast where I focus on interviewing patients, doctors, and influential people in the MS Community. I also started an MS Women's Support Group called Women who Disrupt MS, endorsed by MSFocus and the MS Foundation. Additionally, via Social Media I produce "Moves of the Day" and for March I will be hosting "Free" Mini Workout and Stretching sessions via Facebook and Instagram Live.

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Meet - Tonisha Horton

California, USA

When were you diagnosed with MS? February 2020

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

In February 2020, I received a diagnosis of multiple sclerosis at the age of 27, after experiencing vertigo that had been progressively worsening since the end of the previous year. The vertigo had become disabling, preventing me from putting my head in certain positions and making driving uncomfortable. I was also experiencing vision problems that were suspected to be caused by optic neuritis. Despite my suspicions, no physician agreed with my self-diagnosis until I experienced full eye deviation and underwent an MRI that confirmed the diagnosis.

The first couple of years living with MS was challenging. It felt like constant disease activity and an early MRI revealed numerous new lesions, too many to count. I was prescribed Rebif, which provided minimal relief. After the birth of my son in June 2021, I experienced a severe flare that caused weakness on the left side of my body. Finally, in September 2021, I began taking Kesimpta, which turned out to be a miracle drug for me. Everything got better and I haven't had a flare since. Currently, I am taking Ocrevus in preparation for family planning, but I anticipate switching back to Kesimpta after my next child is born. Because. it has proven to be effective in stabilizing my condition.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

My MS symptoms vary from day to day and even throughout the day. Some days extreme temperatures affect me more than others. Stress is a significant trigger for me too. It can cause my symptoms to worsen. Ms is weird sometimes. My more chronic symptoms include fatigue and insomnia, which I manage by scheduling my physical activities earlier in the day and engaging in less strenuous tasks later on or taking a break. I avoid taking naps unless I am uncontrollably sleepy. Other symptoms that come and go include numbness in my fingers and toes, vision issues, bladder issues, and balance problems. When my symptoms persist longer than usual, I check my stress levels, my diet, I make sure to relax and take a rest day from high-intensity workouts. I also turn to bone broth for some extra healing.

#3: Who/What has been your most important support system?

My family is my primary source of support. My husband is my #1 go-to person. He's my rock. He patiently listens to all my fears about living with this disease and always offers unwavering support. Although my diet, functional medicine doctor, and supplements can be costly, he supports me in my efforts to maintain my health, as best as possible.

In addition, my mom also provides me with a lot of support. She makes sure that there is healthy food available for me to eat at her house and prepares special meals for me when I visit. I often joke that I would be lost without them.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

No.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I created a lot of healthy habits to stay positive and motivated.

My daily management includes:

* Spending time with God in His word and praising him for my blessings. Gratitude grounds me;

* Intermittent fasting. Although I only do 12 hr fast right now for family planning;

* My dietary regimen consists of eliminating gluten, dairy, and processed sugar, as well as excluding any food items that may aggravate my allergies or cause sensitivities.

* My integrative medicine doctor prescribes supplements for me. However, I believe that all individuals living with this disease should take Vitamin D and magnesium as supplements.

* Daily intentional movement; and

* Getting outside as much as I can.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

Find your tribe. You are not alone on this journey. Connecting with others who have MS has been a significant source of support for me. Initially, I was hesitant about Disease-Modifying Therapies (DMTs). However, by conversing with other individuals on medication, I was able to overcome my fear. Witnessing other people with MS living their lives to the fullest and listening to their experiences has also been a source of inspiration for me.

Remember, no state is permanent. Never lose hope!

Taking DMT's is not a failure nor is it a flare! This was a hard one for me. I tried for over 6 months to heal through diet and lifestyle alone, after my diagnosis. But the disease was progressing rapidly. I had multiple flares during that time. I needed medication to intervene and slow things down. Terry Wahls took medication for years before finding her natural cure! I’m still working on finding mine, and hope to one day be DMT-free. But even if that goal is not reached, that’s ok too. Do what is best for you, and don't let anyone tell you differently.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

My mission is to give others hope! Although we have MS, there are still things we can control. We can control our attitudes, what we put in our bodies, how we treat our bodies, and how we move them. Even if it's limited. I truly believe there will be a cure for MS. But I don't think it will be found unless we actively keep trying to find what works for us. Terry Wahls did it. Matt Embry did it. There is hope!

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Leave a comment, and share your experience. We would love to hear from you!