Welcome to DAMMS411 where dance is life-giving therapy.
Dr. Summer Banzhaf - MD with MS
****Complete details coming soon***
Summer diagnosed: Current treatment, Mavenclad
**Summer’s Life Circumstances Leading Up to Her Diagnosis:**
**Summer’s Early MS Support:**
**Summer’s Experience with Physical Activity Before and After Diagnosis:**
**Summer’s Worst Experience with MS:**
**How Summer Feels Her Current Activity Level Impacts Her MS Prognosis:**
**Summer’s perspective on life after her MS diagnosis:**
**Summer’s final hope-inspiring thoughts:**
Take things slow. Control what you can. Focus on activities that boost your prognosis and bring you joy. MS can feel overwhelming, but there is light in the darkness—you just have to find it.
Jonathan Carvalho- Speaker: Nurse with MS
Jonathan diagnosed: August 3, 2022. Current treatment, OCREVUS Infusion
**Jonathan’s Life Circumstances Leading Up to His Diagnosis:**
My journey began in August 2021 when I experienced right-sided weakness from my head, down my chest, and into my right arm. Initially, doctors suspected Lyme disease and prescribed antibiotics. The symptoms subsided, but a year later, I lost feeling in both legs and both upper extremities. This led to an ER visit, where an MRI revealed lesions in my brain and spine—confirming my MS diagnosis.
**Jonathan’s Early MS Support:**
I did not know anyone with MS and only knew what I learned in Nursing school which is very minimal because neurology is not my specialty. I think knowing someone that can relate definitely has its benefits
**Jonathan’s Experience with Physical Activity Before and After Diagnosis:**
Before MS, I was very active. The initial flare made it impossible to maintain my old activity level. It wasn’t until two years later—after starting OCREVUS and undergoing intensive physical therapy—that I started regaining my mobility and stamina. The mental toll of MS was significant and slowed my progress. I learned the importance of being honest with myself and prioritizing mental health, which, along with my new treatment, allowed me to focus on regaining physical strength. Improving my physical health, in turn, supported my mental well-being.
**Jonathan’s Worst Experience with MS:**
Worst experience other than the physical symptoms was trying to navigate the health care system with a chronic disease. I am a nurse and very used to insurance but was not prepared for the push back I was getting. If it was as hard for me being a health care professional, I can only imagine for someone else
**How Jonathan Feels His Current Activity Level Impacts His MS Prognosis:**
Physical exercise is the key to lastly mobility. I went from walking 300 yards to 3 miles by eating right, sleeping right, and exercising daily. It is important to go at your own pace and not overdo it. I found by going at my own pace it naturally improved and increased
**Jonathan’s perspective on life after his MS diagnosis:**
MS has taken much from me, and that brings sadness. But it has also deepened my self-understanding and made me more caring and empathetic. I’m grateful for that, and for all the wonderful people I’ve met. This is a community none of us asked for, but I’m thankful to be part of it.
**Jonathan’s final hope-inspiring thoughts:**
Take things slow. Control what you can. Focus on activities that boost your prognosis and bring you joy. MS can feel overwhelming, but there is light in the darkness—you just have to find it.
Cheryl Hile - Panel Member
She was diagnosed with multiple sclerosis (MS) on October 24, 2006. Cheryl is currently taking Ocrevus, marking her fourth disease-modifying therapy (DMT) since her diagnosis. She started with Copaxone, then switched to Tysabri, followed by Tecfidera/Vumerity. She was recently diagnosed with secondary progressive MS and is currently working to understand what the shift from RMS to SPMS means for her while not letting it define who she is and what she is capable of doing.
**Cheryl’s Life Circumstances Leading Up to Her Diagnosis:**
On January 15, 2006, I ran my fastest marathon. It was an all-out effort that pushed my body to its limits. The next morning, I began experiencing terrible electric shocks in my right bicep. Not only was I in pain, but my arm also felt oddly numb, and my skin had a thick sensation, as though I were wearing a wetsuit. I consulted my primary care physician (PCP), who suggested that I might have pinched a nerve. He wrapped my arm in an ace bandage and prescribed Amitriptyline to help alleviate the pain. While my arm improved, the electric shocks soon returned with even greater intensity.
I spent nine months going to various doctors for appointments and tests, including electromyography (EMG) and nerve conduction studies, until I was finally referred for an MRI. The MRI report indicated that I had "innumerable lesions" in my brain. However, the general neurologist was hesitant to diagnose me with MS since I only presented one symptom in my arm. Seeking a second opinion, I visited an MS specialist, who confirmed that I definitely have MS.
**Cheryl’s Early MS Support:**
My coworker also had multiple sclerosis (MS), but her situation did not provide me with much hope because she progressed quickly. She was a collegiate tennis player, an avid hiker, and a world traveler. She was diagnosed in the 1990s—a time when neurologists advised patients to conserve their energy. She stopped exercising and began using a scooter right away, which made me fear that I might end up with the same fate.
I fell into a funk, but my husband, Brian, encouraged me to keep running. I discovered that just 30 minutes of exercise elevated my spirits more than antidepressants did. So, I started registering for numerous races. These became goals for me, and having something to strive for was key to managing my MS.
I was also fortunate to connect with the MS Society early on. When I began tripping and falling due to foot drop, I initially thought it was due to overtraining and decided to visit my local running shoe store, hoping a new pair of shoes would help. Coincidentally, the MS Society was at the store promoting Walk MS, and a representative (who is now one of my closest friends) encouraged me to attend their educational programs. This was instrumental in helping me get started on the right foot, so to speak.
If I hadn't had Brian or the MS Society to help me navigate the disease, it would have been beneficial to have an MS friend who also thrived on being active. When I was diagnosed in 2006, many neurologists, including my own, still believed that high-intensity exercise, like running, was harmful for people with MS. I felt compelled to hide my running from my old-school neurologist.
**Cheryl’s Experience with Physical Activity Before and After Diagnosis:**
I began running marathons in 2000 and had completed 13 marathons by the time I was diagnosed in 2006. In hindsight, I believe I had multiple sclerosis (MS) for at least 3 to 4 years before my diagnosis.
Shortly after my diagnosis, I started experiencing tripping and falling while running. My neurologist informed me that I had foot drop, and her only advice was to lower my expectations. This response made me incredibly frustrated, and from that day forward, my mantra became, “I do what I can, and I never give up!”
Determined to continue running, I sought help independently and found an orthotist who fitted me with a carbon fiber ankle-foot orthosis. He advised me that while I could continue running, completing marathons might not be feasible. However, I did not want to give up! To date, I have completed 76 half marathons and 64 marathons since my diagnosis. Furthermore, in 2017, I became the first person with MS to run 7 marathons on 7 continents, and I ran them all in just 12 months - plus an 8th marathon if you count Zealandia as our "hidden" continent!
** Cheryl’s Worst Experience with MS:**
Besides foot drop described above, I had four exacerbations in 2009. Right thigh weakness, neuropathic pain, and fatigue got worse and worse with each flair. The only thing my old-school neurologist offered was IV Solumedrol. She did not see any reason to switch my DMTs.
I changed neurologists to one who aligned more with my personality of wanting to treat my disease with a more aggressive action plan. I switched from Copaxone to Tysabri and the drug did well to help temper my immune system. It took about a year for me to regain some strength, but I never recovered to baseline.
**How Cheryl Feels Her Current Activity Level Impacts Her MS Prognosis:**
I truly believe physical activity has helped my long-term prognosis. I run and lift weights all year long, and I add cycle during the summer months. Exercising lifts my mood, decreases stress, and keeps my body physically strong. Furthermore, exercising keeps me positive and helps me survive those tough days where neuropathic pain or fatigue can quickly bring me down.
**Cheryl’s Perspective on Life After Her MS Diagnosis:**
I have been living with MS for almost 20 years, and my condition has definitely progressed now struggle with severe leg drop, my electric shock pain has become more intense, and cognitive issues and MS fatigue have forced me to leave a job I love. Despite these challenges, I feel better on this side of the diagnosis.
How is that possible? It’s because I have met the most amazing people through this difficult journey. I belong to an incredible international support team called “Run A Myelin My Shoes” (RAMMS). We are MS Warriors, supported by our families, friends, and advocates. We gather at least once a year for races in the U.S. and abroad. Our goal is to support each other as athletes living with MS and to encourage others with the disease to exercise to the best of their abilities, despite the mobility challenges they face.
An important component of our team is the virtual aspect, which drives global awareness. We embrace all kinds of movement—walking, swimming, cycling, paddling, yoga, weightlifting, and even ballroom dancing (thanks to Phoebe for bringing this into the group). We've grown to more than 300 members, with cumulative representation in all 50 states and 32 countries.
Supporting my team and helping others gives deeper meaning in my life. My mission is to ensure that others, especially those who are newly diagnosed or dealing with foot drop, know they’re not alone and that they absolutely do not have to lower their expectations
**Cheryl's Final Hope-Inspiring Thoughts:**
My advice for people living with MS is to set achievable goals. Whether you aim to start a new exercise program or improve your diet, I encourage you to take things slowly and make small, deliberate efforts until you reach your objectives. However, don’t stop once you achieve your goal. It's important to maintain those achievements so they become a part of your lifestyle.
Additionally, seek out a supportive community, like RAMMS and DAMMS411, where you can find like-minded individuals who will motivate and encourage you every step of your MS journey.
Allié McGuire - Moderator
She was diagnosed in September 2020.
Every month I receive an infusion of Tysabri at the Memorial Healthcare Cancer Center, located just one block from my home. That proximity is not lost on me. Care, quite literally, lives in my neighborhood.
**Allié’s Life Circumstances Leading Up to Her Diagnosis:**
My diagnosis arrived in a single, unmistakable moment. I was working in our studio one day when I suddenly lost vision in my right eye. A trip to the emergency room led to an ophthalmologist who confirmed my eye itself was fine and sent me back to the ER with a prognosis of multiple sclerosis. An MRI followed. Lesions appeared on my brain and spine. The diagnosis was clear. Life, suddenly, was not.
**Allié’s Early MS Support:**
My sister, Liza, has lived with MS for over twenty years. Watching her navigate the highs and lows of this disease shaped me long before it shaped my own body. She faced it all with strength, resilience, and an unwavering smile. Having her as my guide did not make MS easier, but it made it less frightening. I could see what was possibleAllié McGuire
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**Allié’s Experience with Physical Activity Before and After Diagnosis:**
I was a runner. After my diagnosis, I stopped. Vision loss, balance issues, and crushing fatigue made running feel out of reach. MS did not just slow me down. It took something I loved and placed it beyond my confidence.
Five years later, everything changed. A friend told me she was going to run a marathon in my honor to raise awareness for MS. When I asked her why, she said three simple words. Because I can. That same day, I put on my running shoes for the first time since my diagnosis. I wanted to know what I could still do.
** Allié’s Worst Experience with MS:**
The hardest part has been the loss of trust in my own body. When vision disappears. When balance falters. When fatigue overwhelms. I worked through it by choosing curiosity over fear. By asking what is possible today instead of mourning what was possible yesterday. By moving forward anyway.
**How Allié Feels Her Current Activity Level Impacts Her MS Prognosis:**
Movement has become a form of medicine for me. Not a cure, but a partnership. Running gives me strength, clarity, and confidence. It reminds me that my body is still capable of extraordinary things.
**Allié’s Perspective on Life After Her MS Diagnosis:**
Different. Deeper. More intentional. MS stripped away assumptions and replaced them with presence. I do not wish for this diagnosis, but I honor what it has taught me about resilience, gratitude, and purpose.
**Allié’s Final Hope-Inspiring Thoughts:**
Your diagnosis is not the end of your story. It is a turning point. There is still strength within you, even on the days you cannot feel it. Sometimes hope arrives quietly, in small choices and simple steps. And sometimes it arrives boldly, reminding you that you are still here. Still capable. Still becoming.
Because you can.
Adam Powell - Panel Member
Adam Powell
Fenton, Michigan, USA
Diagnosed: June 17th, 2019
Ocrevus since January 2020
**Adam’s Life Circumstances Leading Up to His Diagnosis:**
I started having numbness and pain in my feet in October 2018. I started noticing that my balance was affected and I couldn’t keep my legs under me. If I stood to long I would just start sinking and would have to sit down, before I fell down. In December of 2018 both of my legs felt really cold and really numb and just weren’t working correctly. I finally went to a Dr in January; he sent me to a hernia specialist. The specialist said it wasn’t a hernia, it was something called a “sports hernia.” Which is something I had never heard of before and still haven’t. He sent me to physical therapy. In PT I kept complaining about my balance being off and the numbness in my legs. The PT originally thought that it was a pinched nerve in my back and was focusing on that, until my back pain got better but the issues in both of my legs remained. A few months into therapy my PT said I should go see a neurologist because she thinks I might have MS. Within 2 months of that I was diagnosed with Primary Progressive MS. I switched doctors to an MS specialized neurologist, and he called in the fastest most aggressive case of PPMS he had ever seen. I had to stop working my career at UPS immediately and within 5 months I was unable to walk and subsequently diagnosed a paraplegic.
**Adam’s Early MS Support:**
I barely even knew what MS was when I was diagnosed and I only had heard of one person that had it. A friend of mines dad had it, I barely knew him and didn’t know anything about the diagnosis. Knowing what I know now, I would have loved to have community of people that truly understood what it was like to have MS. I spent the first year of diagnosis completely alone and just trying to figure out what this thing was doing to my body and my mind.
**Adam’s Experience with Physical Activity Before and After Diagnosis:**
I was not able to be physically active immediately after diagnosis since my decline was so quick and rapid. I went from being a big, strong, athletic workaholic to not being able to work and not being able to walk or drive. I took me almost a full year to be able to start being active again. I started going to PT in February of 2020 to try to get some mobility back, but that didn’t last long because Covid hit in March and I was stuck at home for 4 months. I took that time to really look at myself in the mirror and figure out who I was going to be moving forward. I got into PT again in July of 2020 and haven’t stopped since. Physical activity has been a huge part of my fight with this disease. I am now able to drive away, with hand controls, I can walk again, with one walking stick. I can even walk sometimes without any sticks. I ride a bike now, I go to the gym, I do a HIIT class for MS multiple times a year.
**Adam’s Worst Experience with MS:**
My worst experience with MS was pretty much all of it. It hit me so hard and so fast that I barely had time to figure out what happened. I had my life ripped away from me and had to figure out what my new life was going to become, and for a long time, I didn’t know the answer that, or if I was even going to get out of the “darkness.” As I said earlier, I really had to sit with myself and look at myself in the mirror and face some hard truths about what I couldn’t do anymore. It was an extremely tough realization that my life was never going to be the same as it was before. Luckily, I got out of it, and I was able to get my head right and decided that I was going to do whatever I could to try to get some semblances of my life back.
**How Adam Feels His Current Activity Level Impacts His MS Prognosis:**
I feel like physical activity is the best thing that people with MS can do. Currently, I am involved in a high intensity interval training class for MS, I am starting physical therapy at U of M flint soon to work with their PT students. I go to the gym. I ride my bike as much as possible, even though its not easy to do in the dead of winter in Michigan. I try to stay as physically active as I can, even when my body doesn’t really want to be. We always have to stay moving.
**Adam’s perspective on life after his MS diagnosis:**
As strange as it sounds, I feel like my life is both better and worse because of the diagnosis. My whole world, as I used to know it, got ripped away from me in an instant. No more working, no more walking, no more sports, no driving. Some of those things I have been able to get back but things will never be the same. It’s better because it slowed my life down and I was able to not take things for granted anymore. I did things in the last 5 years that I never would have done when I was still “healthy.” I went on multiple cross country road trips stopping at any national park I came across. I met with a ton of people I have met in the MS community on these trips. It showed me the things I am good at that I never thought I would be. Fundraising and public speaking are the main one. In the last 5 years I have raised over 70000 dollars for the MS society and have done dozens of podcasts and in person events across the country, with many more coming later this year.
**Adam’s final hope-inspiring thoughts:**
One of the biggest things I would like to tell anyone struggling with MS is to keep moving, no matter what that looks like. Try to be a little bit better than you were yesterday, just a little bit. Celebrate those small victories and just keep trying to achieve them. I am WALKING proof that those small victories can add up to something huge, just keep at it.
Tim Salmon - Panel member
He was diagnosed with multiple sclerosis (MS) on May 5, 2003, when he was 33 years old. His chosen disease-modifying therapy is Ocrevus infusion.
**Tim’s Life Circumstances Leading Up to His Diagnosis:**
Tim was training for a marathon and completed a long run on a Sunday. When he woke up the following Monday, he noticed that his right leg was tingling and numb. By the end of that week, the tingling and numbness had spread to his entire body from the neck down. He received his MS diagnosis two weeks later.
**Tim’s Early MS Support:**
After his diagnosis, Tim reached out to the National MS Society, which connected him with some wonderful individuals living with MS. The phone calls were incredibly helpful and informative, guiding him in choosing the right medication to start with — a crucial step when first diagnosed.
**Tim’s Experience with Physical Activity Before and After Diagnosis:**
Fortunately, Tim was very athletic at the time of his diagnosis. He was in the best shape of his life, participating in activities such as running marathons, surfing, scuba diving, kayaking, and working out at the gym daily. He acknowledges that being fit greatly benefited him, as in the beginning, he experienced no adverse effects from living with MS.
Determined to maintain his active lifestyle, Tim quickly committed to staying physically active. He believed that staying active and eating well would be his best strategy in his battle against MS.
**Tim’s Worst Experience with MS:**
I briefly lost my vision, and it felt as if a bomb had exploded inside my body. I was under a tremendous amount of stress while training to become a peace officer and a California State Park Ranger at a training academy, and things became really difficult. Ultimately, I decided it was best to leave this dream job to take care of myself. This incident triggered a severe MS exacerbation, which sidelined me from running and negatively impacted my love for surfing. Looking back, I refer to this period as having “MS PTSD,” and I felt broken. I had to reset my life, coming to terms with the fact that MS is a serious condition that can really affect me.
To cope, I needed to slow down and eliminate significant stress in my life. I developed a new battle plan for managing my MS, which included meditation, increased prayer, breathing exercises, healthier eating, new physical workouts, swimming, walking, and focusing on what I CAN DO.
In 2018, I faced challenges with surfing due to the progression of my multiple sclerosis (MS), and it was time to adapt by finding a sport that suited me better on the ocean. Living with secondary progressive MS, I remain determined to push forward every day.
I took up prone paddleboarding, which involves paddling a 12 to 14-foot board on the open ocean using only my arms and hands—no paddles. I have always enjoyed spending time on the water, and I realized it was time to step out of my comfort zone, confront the MS beast, and attempt a long-distance paddle. In 2019, I set an ambitious goal for myself: to complete the Rock-to-Rock paddleboard race, a grueling 22-mile channel crossing from Catalina Island to San Pedro, CA. Throughout this race, I would experience fatigue, pain, and struggle, all while pushing my mental and physical limits.
I embarked on this paddle not just to combat MS but to build confidence and achieve something no one with MS had accomplished before. I successfully completed the paddle to raise awareness and funds for MS, ultimately raising over $10,000 for the MS Society. In 2021, I took on the Rock-to-Rock paddle again, and I truly showed MS who the boss was!
Looking ahead, I may set a goal for another paddle crossing; I like to keep that dream alive. This is how I have chosen to live my life as an uncommon MS warrior. I pursue my dreams, and in doing so, I hope to leave a positive impact and inspire others living with MS. It is incredible what we can achieve when we push ourselves and truly believe in our abilities.
Completing this incredible paddle significantly boosted my confidence in my fight against MS. I believe that with hard work and commitment, those of us living with MS can overcome significant challenges. We may be knocked down, but with determination, we can always get back up and come back stronger. It is also essential to reach out within our MS community for support—together, we are always stronger!
**How Tim Feels His Current Activity Level Impacts His MS Prognosis:**
I can’t do everything I did when I was first diagnosed, but I remind myself that this is okay. I am still very physically active and can engage in many of the things I love; I just need to adapt and approach them differently. I know that staying physically fit positively influences my MS prognosis, both physically and mentally. Keeping active and moving forward is the best medicine for my MS—it truly makes me feel good mentally and physically!
**Tim’s perspective on life after his MS diagnosis:**
Although I currently face serious challenges with MS, particularly cognitive decline, which can be extremely frustrating, I genuinely feel that my life is great and I am very blessed. This positive outlook comes from my experience living with MS and being part of an incredible MS community that has truly made my life 100% better. I have met many amazing MS warriors and champions.
**Tim’s final hope-inspiring thoughts:**
Living with MS has taken me on an incredible journey and connected me with some truly remarkable individuals. I have learned that there is immense strength within our community, and we are always stronger together as MS warriors. I have been inspired by so many people living with MS, and their stories have motivated me to dig deeper and become a stronger MS champion. I believe we can all support each other by communicating and sharing our unique stories and journeys as we work towards our ultimate goal of finding a cure for MS.
Thomas Symanski - Panel member
He was diagnosed with multiple sclerosis (MS) on May 1, 2024, with relapsing-remitting MS (RRMS). He has chosen to take Kesimpta and dalfampridine as his disease-modifying treatments.
**Thom’s Life Circumstances Leading Up to His Diagnosis:**
In early September 2023, I came down with a severe stomach bug. I spent all of Labor Day weekend moving between the bedroom and the bathroom, drinking a lot of water and hardly eating anything. By the following Friday, I finally felt recovered enough to return to the gym. However, during my warm-up, my whole body felt “off.” When I tried to squat, my legs felt wobbly, as if they were asleep. When I attempted to bench press, I struggled to complete five reps of a weight I could normally lift easily for 30 reps. As the day went on, I tried to ignore the fact that simply walking felt challenging and that I was limping. It became harder to overlook that I couldn’t bend the fingers of my left hand when I tried to scratch my ear.
Later that day, after my wife and I had put our nine-month-old daughter to bed, I shared my concerns with her and asked, “Do you think I’m having a stroke?” We concluded that I had probably pushed myself at the gym harder than my body was ready for, and that I should take it easy for the next few days.
The next morning, it was difficult to get out of bed. I kissed my wife goodbye as she left for work, then made a cup of coffee for myself and a bottle of milk for our daughter. After feeding her, I decided to do some stretches for my legs while she crawled around in her playroom. It wasn’t until I tried to stand up from a half-kneeling position and couldn’t move that I realized something serious was happening. I thought to myself, “I’m going to die today,” as I pulled myself up onto the couch and used all my strength to rock forward into a standing position. I called my brother to come watch his niece while I took myself to urgent care. They advised me to go to the ER.
After parking in the lot and getting out of the car, my legs began to buckle as I approached the entrance to the ER. I had to brace myself against the building to avoid falling. They admitted me immediately, and I spent the next two weeks in the hospital. However, it wasn’t until six months later, after undergoing multiple MRIs, ultrasounds, CAT scans, blood tests, and spinal taps, that I was diagnosed with multiple sclerosis.
**Thom’s Early MS Support:**
Between the time of my first flare-up and my diagnosis, I developed friendships with a few men and a woman around my age who were living with MS and competing at a high level in CrossFit. Having these friends gave me the courage and confidence to return to working out, even if it looked different from my routine before the diagnosis. Their wisdom and empathy also helped me feel less alone in dealing with my diagnosis.
**Thom’s Experience with Physical Activity Before and After Diagnosis:**
I have always been physically active. Three weeks before my first flare-up, my team finished in third place at a local CrossFit competition. Multiple sclerosis (MS) primarily affects my legs, and after my first flare, I had to relearn how to walk and use my hands. Although I still have a slight drop foot on my right side, my condition has greatly improved through exercise and the use of dalfampridine. I continue to challenge myself physically. Sometimes, if I push myself too hard, I experience what I call "neuro crashes," during which my legs tremble and I am unable to walk for about ten minutes. Interestingly, having MS has opened up many athletic opportunities for me, including the chance to compete at the Adaptive CrossFit Games against athletes from around the world who also have neurological impairments.
**Thom’s Worst Experience with MS:**
A few days after coming home from the hospital, I fell while holding my daughter and struggled to get myself up to put her in her crib. During that period, I also lost my balance and dropped her twice.
**How Thom Feels His Current Activity Level Impacts His MS Prognosis:**
Although running remains challenging, I feel limitless in my physical activities. I attribute this to staying fit and eating healthy.
**Thom’s perspective on life after his MS diagnosis:**
Staring a chronic disease in the face forced me to reevaluate the way I saw and treated myself and those around me. The result was becoming more compassionate towards myself and more empathetic towards others.
**Thom’s final hope-inspiring thoughts:**
Experiencing multiple falls—whether it was while playing with my daughter, opening the fridge, or walking down the stairs—made me feel as though I was caught in a downward spiral, both physically and emotionally. At the time, each fall felt devastating and undermined my confidence as a husband, father, and individual. Each incident surprised me, just as my diagnosis of MS had. However, the greatest surprise has been discovering the power of my mind to transform these seemingly devastating blows to my identity into motivation to surpass my own limits. Remember, no matter what happens in life, you always have the choice in how you respond to it.
Phoebe Walker - Panel Member, founder of DAMMS411 INC, and o
Diagnosed with multiple sclerosis (MS) in November 2001, she briefly took Copaxone in 2004 but stopped due to severe side effects. Afterward, she used Rebif injections until they stopped working nine years later. She then tried Tecfidera and Aubagio, but had heart issues with those medications. Since 2015, Phoebe has not taken any disease-modifying therapy. She attributes her management of the disease to her faith in God, dancing, and a positive mindset.
**Phoebe’s Life Circumstances Leading Up to Her Diagnosis and Worst Experience with MS:**
Phoebe had experienced odd symptoms on rare occasions since high school. However, the first significant episode of multiple sclerosis (MS) occurred in August 2001. This flair, which manifested as left-sided hemiataxia, sent her to the emergency room, where a brain scan revealed a large lesion in her brain. During a follow-up appointment the following week, a neurologist informed her that the condition could either be MS or a tumor. If it turned out to be a tumor, it would be inoperable and terminal. In addition to her MS diagnosis, a major loss that year was having to decline her acceptance to the University of North Carolina at Chapel Hill’s premed biology program—a goal she had spent over a decade working towards.
At the end of 2006, Phoebe experienced a complete loss of sight and became physically incapacitated. She describes this as the longest year of her life as she waited over nine months to have reasonable eyesight restored. During this time, she also had to retrain herself to walk and use her arms and hands. This darkest year became synonymous with the most transformative year of her life. Phoebe recognized that she needed to redefine her identity while also finding a new life purpose.
The easier part was acknowledging that her current life story was a miracle story, one that she felt compelled to share as she continued to work on self-improvement and personal growth. As a biologist, she understood the significance of good research. Through her research, she developed several action plans aimed at improving her health, coupled with regular personal development efforts.
**Phoebe’s Early MS Support:**
When I was first diagnosed with MS in 2001, both my mother and uncle (my mother's brother) had been living with the disease for over a decade. At that time, I did not see them as good examples of how to cope with MS. They both led MS support groups, which I also attended. However, I remember the support groups feeling more like gatherings to complain about MS rather than places for sharing solutions, adaptations, or positive experiences. This environment contributed to a very grim outlook on life with MS, which negatively affected my mindset during the first three years after my diagnosis. My stubborn mentality during that time may have hurt me then, but it has become a source of strength that helps me maintain forward momentum now.
**Phoebe’s Experience with Physical Activity Before and After Diagnosis:**
Before my diagnosis, I maintained a moderate level of physical activity, engaging in only occasional strenuous exercise. After my eyesight and most of my physical abilities were restored in 2007, I dedicated a significant amount of time to research, constantly seeking new ways to improve myself physically, mentally, and overall. I completed graduate school in 2013 and wrote my award-winning memoir, which was published in 2014.
In December 2015, I stopped my MS medication, followed by a transformative change in May 2016 when I began taking ballroom dancing lessons. Dancing has changed my life in remarkable ways. As long as I can dance and move my body to music, I will! The combination of music and body movement (dancing) acts as real medicine for me. In addition to dancing, I also do resistance training twice a week, practice yin stretching yoga most days, and walk over 10,000 steps each day.
**How Phoebe Feels Her Current Activity Level Impacts Her MS Prognosis:**
I believe my current activity level is the best thing for my MS prognosis, and my neurologist agrees. I have been seeing my current neurologist for over two decades, and my latest appointment was the first time I saw such significant joy from him regarding the benefits of dancing.
From 2006 to 2021, I did not experience any exacerbations, but then I developed five new lesions, the largest I’ve ever had, including the first time I had a lesion located in my frontal lobe. Despite this setback, I attribute my ability to function almost normally during such a significant exacerbation to the fact that I had been dancing regularly for over six years. I was not hospitalized, nor did I require IV steroids; instead, I took a round of oral steroids for five days and continued dancing throughout the exacerbation.
My doctor has witnessed the long-standing benefits of dance, which not only sustained me but helped me recover from that major exacerbation and even led to further muscle strengthening. Last year, he allowed me to wait 12 months between appointments for the first time. My clinical findings presented well at my recent exam, so I get to wait another 12 months for my next appointment. He mentioned that I am physically stronger, and there is no reason for me to have another MRI at this time. It's been two years since my last one.
Before I left his office, he said to me, “Many don’t understand that neuroplasticity is very real; it just takes time.” He couldn’t be more right, and my body is a perfect example of that. I feel blessed to share this experience. Oh, and my neurologist is the MS specialist in my county.
** Phoebe’s Perspective on Life After Her MS Diagnosis:**
I believe I am living my best life every and serving one of the best purposes on this earth, to help others, like me, living with debilitating neurological autoimmune disorders to live their best productive and joyful lives.
2001 diagnosis – 2006 darkest year ever gaining innumerable lesions between brain and spine– 2016 born into a new life – 2020, joining RAMMS community that challenged me to fully engage my physical strength – 2023, competing in ballroom dancing on a national platform while not having a need for MS medications. Best of all, creation of a nonprofit to support people like me on a global platform. I’m hoping to create massive tsunami waves of movement in the MS community.
**Phoebe’s Final Hope-Inspiring Thoughts:**
We deserve to live fulfilling, joyful, and functional lives. Regardless of how we may physically feel at any given moment, it’s important to take a step back and remember that we can accomplish things. Take it slow, allow yourself a moment to identify what adaptations are necessary, and then pace yourself forward. I remember when I was completely blind in both eyes and incapacitated; the moment I could start seeing again was a tremendous victory for me. It awarded me the added benefit of being able to pick up lint balls off the floor which felt like a significant achievement. I was once again able to contribute to my family.
Before that point, my focus was on constant prayer and sending positive thoughts into the world. It's essential to concentrate on what you CAN do and to cultivate a supportive community. We truly are better and stronger together; we won’t all be down on the same day. Be ready to lift and cheer on others during your good days, and remember to reach out to them when you’re having a rough day. The remarkable individuals I know with MS (and other health conditions) serve as major motivators for me, and I feel truly blessed to have them in my life.
Thank you so much for reading my story. I hope you find hope and inspiration through it. Cheers,
Phoebe
Brian Wallace - Panel Member
Meet Brian Wallace Ohio/USA
Diagnosed in October 1997. He has been on a DMT from day one of diagnosis. The most recent being Mavenclad two years ago.
**Brian’s Life Circumstances Leading Up to His Diagnosis:**
Brian was a dedicated runner when, during training, he began to trip unexpectedly. Soon after, he experienced double vision and trouble distinguishing colors. These symptoms ultimately led to his MS diagnosis.
**Brian’s Early MS Support:**
Brian had no prior knowledge of MS—no family or friends with the disease—and didn’t meet another person with MS until 12 years after his diagnosis. Lacking early support, Brian founded the “MS Michigan Man 64” podcast to help others who are newly diagnosed, offering stories of hope and reassurance that no one is alone on this journey. “We are all Warriors together,” he says.
**Brian’s Experience with Physical Activity Before and After Diagnosis:**
Athletics were always central to Brian’s life. He played hockey and football in high school and played football at the University of Michigan from 1988 to 1991, participating in three Rose Bowls, a Gator Bowl, and contributing to four Big Ten championships. He continued as a runner and football coach after graduation, completing a triathlon at 24. Even after his MS diagnosis, Brian never stopped working out—he simply adapted his training. He enjoys golf in his free time.
**Brian’s Worst Experience with MS:**
In 2015, Brian went on disability after 20 years with the state of Ohio. The transition was mentally difficult, leading to a two-year struggle until he began focusing on mental health, rebuilding his confidence, and finding new, meaningful work.
**How Brian Feels His Current Activity Level Impacts His MS Prognosis:**
MS has changed Brian’s approach to life. He now uses mobility aids and must plan even simple trips. Still, he finds ways to continue doing what he loves, seeking alternatives or help when needed.
**Brian’s perspective on life after his MS diagnosis:**
Twenty-eight years after diagnosis, Brian feels his life is better now than it was at the start. MS has humbled him and shown the importance of resilience. Early on, he struggled to understand MS, especially the mental challenges, but now recognizes that mindset is as crucial as physical strength.
**Brian’s final hope-inspiring thoughts:**
“MS cannot define your life. Advocate for yourself. No matter your age at diagnosis, you have to take charge of your new lifestyle. Find things that keep you positive and your mind occupied. Networking is vital for mental health.”
Dr. Susan Payrovi - Speaker: Physician with MS
Details coming soon
coming soon
Jonathan Carvalho- Speaker: Nurse with MS
Details coming soon
coming soon
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