MAKING MEANING WITH MS

When I think about my MS journey, a song by Miley Cyrus called “The Climb” comes to mind. To climb a mountain takes a lot of strength, endurance, and perseverance but every step you take brings you higher. I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) in 2017 after having major back surgery. Before the surgery, I was struggling with an abnormal gait. The surgery did not fix it and I continued walking with a limp. Because of that, I was sent to a neurologist and she scheduled an MRI of my brain and back. She met with me and showed me the lesions on my brain and spine and explained to me that I had MS. My immediate reaction was crying and saying, “Why me?” I admit that I felt sorry for myself at first.

During this time, I was teaching third grade. At the end of the day, I felt so tired that making dinner, doing laundry, and correcting papers were difficult. Unfortunately, I had to give up teaching after thirty-five years. My husband and daughter were at work every day and I felt lonely, lost, and depressed. I spent a lot of time worrying about the future. I knew there was no cure and I did not know if treatment to slow down the progressions of the disease would work for me.

My neurologist talked about the options for slowing down the progression of MS and for controlling the symptoms. A drug called Ocrevus was approved by the FDA for RRMS and for the first time for PPMS. I now have an infusion two times a year. So far it seems to be slowing down the progression of my disease.

Through a friend, I was referred to Dr. Saud A. Sadiq at the International MS Management Practice. She said he had a loving and caring manner and was determined to help her get better. I became a patient of the practice. Not only did I have Dr. Sadiq, I realized an entire team would be working with me including Dr. Stark; a neurologist, Dr. Bates; a naturopathic doctor, and Dr. Kanter; a physical therapist. I learned from these doctors that MS was surely an uphill “climb” and took a team of people working together to bring about change. This gave me hope that I needed to keep my head held high, be strong, and keep pushing on. It was going to be a long climb with no guarantees that I would reach the top.

Dr. Sadiq told me that I was a candidate for the FDA-approved phase II stem cell trial. I started the trial in early 2019. As part of the study, I began working with Dr. Bates and Dr. Kanter. In December 2020, I completed the trial. For the first time since 2016, I am clearly better and stronger.

I have found that I can do something that I had not been able to do since my diagnosis. I could not jump rope before; could not even hop. I kept trying and trying. Finally, I can hop and jump a little bit. I bought a jump rope and kept practicing and now I can jump fifty in a row. Later, I found I could walk heel to toe down the corridor. I even slowly jogged around the track!

I feel that my success is a result of all the different and important things that I have been doing. I have completed the stem cell trial, changed my diet, continued with PT, added working with a trainer, worked hard on my own doing cardio every day, and practicing the exercises given to me.

I do not know how high the climb is going to take me, but I will continue to fight. This process has been slow but I am seeing changes and I am continuing to make that climb. This is what keeps me motivated to work hard each day. As Miley Cyrus says, “Ain’t how fast I get there, it’s all about the climb.“