When were you diagnosed with MS? May 1999
What type of MS do you have? 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?
My name is Mara, I’m 43 years old, I have been living with Multiple Sclerosis (MS) for 22 years. I was initially diagnosed with Relapsing-Remitting MS. However over time, it has progressed to Secondary-Progressive MS, When I sat down to write my story, I thought it began in my early 20s. But as I reflect back, I believe my symptoms actually started a decade earlier. In second grade, I was diagnosed with a learning difference. I was reading at a kindergarten reading level in second grade. According to studies done at the Mayo Clinic, a diagnosis of a learning difference may be the first symptom of MS.
At age 8, I broke my right elbow above the growth plate while hanging from a jungle gym. My best friend pulled me and I fell. Fast forward to grade school, I attended a school designed for those with learning differences. There where I was diagnosed with Dyslexia and Attention Deficit Disorder (ADD). I was finally in a place that understood, how to teach children with learning differences, Soon, I was reading and writing in no time and getting caught up. This new environment allowed me to excel in school. I was playing sports such as tennis for the Dowling League and I also ranked with the USTA and horseback riding. I was making friends, and feeling like a regular 10-year-old. I often reflect back on the days, when I had the ability to do anything with my body and I can't help but feel like, I should have savored those days even more.
After elementary school, I attended a middle school program designed to meet the needs of kids with Dyslexia and ADD at a new school. There I completed 8th and 9th grade; but, I really didn’t feel like I fit in there. So I begged my parents to let me finish middle school at the public school that my sister attended.
Finally, in 1996, I was headed to an old clothing store in Miami, FL., when I stepped onto the escalator with my right foot, and my whole face went numb. This lasted for about 30 minutes. Embarrassed, I told no one about it. The feeling continued to happen. It was what they call a relapse in the MS world. I was 17 at the time and Graduating from High school. I thought I had the world in my hands. At 18, I got my first job without an interview; waitressing at Ruby Tuesdays. Remarkably, I still remember my first order. Being on my feet all day for 8-10 hours never fazed me, I was carrying plated food trays, remembering orders and table numbers like it was nothing to it. Brain fog...I didn’t even know what that was.
In the summer of 1996, I moved to Champaign, Illinois to attend college with the goal of majoring in psychology. Despite a valiant attempt, at college in a frigid environment, this Florida girl was no match for the Illinois cold. Before the spring semester started, I decided to move back to Miami.
In 1997 I felt I needed a different environment than Miami, so I moved to Tallahassee, FL where I continued to pursue a college degree while working at Ruby Tuesday’s. All seemed as it should be. I had a nice setup, I was on track and working toward a college education, I had a nice apartment that I shared with fun roommates and I was back working in an industry I loved. Though it seemed idyllic, I realize now, reflecting back, that all wasn’t quite right. One day in 1999, I suffered another symptom. I remember it clearly, I had been sitting at a party when my body went completely stiff and numb. Again, I said nothing, still not able to connect the dots of all these “events” that were scattered across my life.
Shortly after, I moved back home to Miami. In 2000, I was working 3 jobs. I found a great apartment central to all three jobs. I was partying every night and enjoying my life as a normal 21-year-old. I will never forget this particular time. I clearly remember having a cold that I just could not kick. I was walking around in a fog. Then on December 22, I remember sitting down at a friend’s Christmas party and noticing that my calf had gone numb. This sensation lasted for a complete day. Despite the numbness, I kept working as if nothing was wrong. By December 24, my whole left leg was tingling, numb, painful and I had developed a terrible migraine. My migraine was making me want to run and hide but, we had a family cruise. Crippled by the pain and headache, I let my family know I could not go on the cruise, I called off of work and promptly went to the hospital.
This hospital stay resulted in my first misdiagnosis. I was diagnosed with Complex Migraines. In December – March of this year, I experienced additional symptoms; but still, the doctors continued to tell me it was Complex Migraines.
Convinced the physicians hadn’t gotten it quite right, I continued to try and find the correct diagnosis. Finally, I found one special Doctor at the Miami Heart Institute who saw me. I was a 22-year girl in pain, my right arm was glued to my chest like I was saluting the American flag. I was only able to walk around slowly and I was hunched over from lack of core strength. I was unable to hold myself up. I was debilitated and being beaten by a disease I didn’t even know I had yet.
This was definitely, not Complicated Migraines! Seeing my condition, the doctor admitted me on the spot explaining to my mother his concern. All while reassuring her that he was determined to help find the real problem. The first test I underwent was a Magnetic Resonance Image (MRI) immediately. A few hours later he would hold up the images against a window in my hospital room so the light would illuminate the images. He pointed to a spot and said, this was a classic diagnostic spot commonly seen in Multiple Sclerosis. HE SAID...YOU HAVE MULTIPLE SCLEROSIS!
I was alone when I got the diagnosis. I was devastated. You know, the hardest part wasn't hearing the diagnosis, it was having to tell my family. For the next 10 days, I remained in the hospital, being pumped with Solumedrol (a steroid) with the hope that this would reduce the inflammation going on in my brain so that the symptoms, I was having would improve.
Following my discharge from the hospital, I was referred to a specialist who started me on Avonex. The rollercoaster of MS had begun and I was able to bounce back. I would only stay on Avonex for a short time, maybe 6 months. The site and spasms were too much for me to handle. The physician would then switch me to Beta-Serona 1A. Then, I moved to Maryland a few years later, in the fall of 2003. That's when I started working as an assistant manager at a deli.
Later that year I took a different position at a company called Noodles & Company. I stayed with them for 10 years. For the next ten years, I called MS the “hurry up and wait” disease. Always nervous when the next “exacerbation” would happen.
In June 2014, while trying to finally complete my dream of a college degree, I was pulling into the parking lot on my first day of nursing school. I got extremely nauseous, very weak, and I had limited movement in my left leg. I stepped out of the car and I hit the pavement. I would spend the next 21 days in the hospital doing plasma paresis at the University of Virginia in Charlottesville. After the treatment, I returned home in a wheelchair and I was unable to walk. There would be 8 months of rehab to learn to walk again, antidepressants to help my mood and get me in a fighting frame of mind, and help in the form of disability to help mitigate the loss of income.
In March 2015, James and I packed up our 12-year life in Virginia and I moved home. James started heading to Miami, Florida. In 2016, I had Medtronic spinal cord stimulation devices put in my spine to help control my nerve pain.
So, needless to say, my MS journey has been a rollercoaster ride.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I have experienced migraines, stiffness, numbness, tingling, and muscle weakness. Over time, I have developed seizures, bladder difficulty, and foot drop. As a result of previous relapses, my cognition is damaged. I take cognition tests to monitor it every year.
I manage my symptoms using yoga, mindfulness, and meditation. They have helped me reduce my pain medication dosage by half, giving me a new outlook on life. “I don’t think any physician working with this disease thinks you can cure MS with diet alone,” explains Dr. Piccio. “But we may be able to use it as an add-on to current treatments to help people feel better.”
#3: Who/What has been your most important support system?
I would definitely say my family, close friends, and my MS Yoga Movements supporters.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
Currently, I don’t use any assistive devices. I have used them in the past when I had relapses. Currently, I have a spinal cord stimulator in my back.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
While I have made significant improvements, I can walk, exercise, I feel happy and I know I have a wonderful life ahead; I still have lingering issues from my last relapse, as well as many others. These relapses have left their cumulative residue behind! I will need physical therapy for life due to the severity of these relapses. During a follow-up appointment, I was told that I was not going to be able to complete my lifelong dream of having children of my own. This completely crushed me.
Determined not to let my MS get the best of me, I decided it was time for some lifestyle changes. Unhappy with my appearance and strength, I sought to exercise for fulfillment. I started attending a local gym and enjoyed the group classes (Spin, Power, Cross Training). These classes helped me lose 70lbs and my determination has helped me keep it off. The hardest part of the group classes was not being able to keep up with others, because my MS would not allow me to put my body in certain positions and do certain movements. I knew that with continued effort, I could overcome my MS restrictions. Pushing through tough workouts, and overstressing my muscles, I found myself looking for something else.
I practice yoga daily. Practicing yoga has helped me with everything from body movements to controlled breathing and it has helped me to build better core strength. All the components, I needed to help push through my relapse residue and MS limitations. It was clearly giving me a better quality of life, helping me not only focus on my physical limitations but my mental as well.
#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?
You’re a fighter, look at everything you’ve overcome. Don’t give up.” -Olivia Benson
I am now working part-time as a yoga instructor for YMCA/JCC as I run my business. It’s been my greatest joy. I am also on the pathway to becoming an ambassador for MSSociety.
As a yoga Instructor, I am motivated when a student is able to explore a new pose, emotion, or sensation in their bodies for the first time. And then be able to talk with me and smile because they felt something brand new.
I just want to inspire and help people reach their goals and be healthier than they were yesterday. With a better mindset a good plan and a community to support them.
“One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.” Brene Brown
“With the 23 years I have experienced in the MS world, I can help you navigate through your disease with yoga, mindfulness, and movements in a holistic way.
Let us take this journey together.
#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...MS Yoga Movements. MS Yoga Movements is a place, I have created that I now call home and a place where you feel welcomed. The goal of MS Yoga Movements is to create a space where people with MS can find their voice, share their stories, and find support in a community that understands living life with MS while learning about healthy ways to mitigate the effects and impacts of Multiple Sclerosis.
To achieve this goal, MS Yoga Movements has developed a program that couples the emotional support and community structure of a traditional support group with education and instruction based on techniques from the yoga tradition. This pairing of community and yoga will help those living with MS to regain the inner strength they might have once thought was lost.
Through our community structure and yoga foundation, MS Yoga Movements’ leaders will present members with movement techniques seated in the traditions of yoga, meditation practices, and nutritional tips to help those suffering with MS find relief from their pain and stress, alleviate stiffness, develop techniques to promote relaxation and rediscover inner balance. Instruction in yoga, meditation, and breath control will work synergistically to help individuals with MS to build solid muscle and core strength that MS has taken away and learn ways to relieve stress and anxiety so often a part of living with MS.
Together we will create a loving community of MS warriors who support each other while discovering and honing habits that have been shown to benefit the lives of MS patients. I hope you will meet me in discovering the benefits of a yoga community by joining our mission to change the way we face Multiple Sclerosis.
Come along on this journey to “Managing Multiple Sclerosis the Holistic Way”!
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