When were you diagnosed with MS? May, 2013
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?
My journey with MS started in 2008 in Germany, where I was working as a music director. I was struggling with depression and my doctors were trying new medications. At the same time, my hands and feet went numb. My assumption was it was somehow related to the new treatment. They performed various tests including an MRI, but they found nothing conclusive. The numbness subsided after a couple of weeks and things went basically back to normal. Although every now and then, I struggled with fatigue and weakness. Also, I didn’t know at the time, I was showing the first signs of foot drop. Jump ahead 5 years and I was walking home from work and found I could barely walk. My doctor immediately ordered an MRI and admitted me to the hospital. Although I speak German, I was not fluent in a lot of medical jargon so there was a steep learning curve. They did not give a final diagnosis in the hospital. But before I was released, I asked one of the residents “Could it be MS?” Because, somehow I knew. She looked at me with sad eyes and just nodded. A few days later my neurologist gave me the news. My reaction was actually one of relief. It was like the last piece of a puzzle finally fell into place. Solving a mystery that had taunted me for years.
I can’t sugarcoat how MS has affected me. Although, I can still compose music and do some recording in my studio. Because, I have lost most of my mobility and some of the use in my hands, I can no longer perform. While music is still a passion, it is now more therapy than my profession. However, I think its biggest impact on my life is not what it took away, but, the new perspective on life it has given me. Because MS requires me to be mindful of how I organize my day, what I eat, what activities I can enjoy, and where I can and cannot go, MS has become a lens that has given me the opportunity to appreciate and be grateful for things we often take for granted.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I have many of the more common MS symptoms, including muscle weakness, numbness in my hands and feet, severe spasticity, footdrop, depression, and fatigue. I have also experienced some of the less common ones like the Pseudobulbar effect. In addition to my DMT, I take medications for spasticity, walking, and depression. I also do chair yoga and recently started physical and occupational therapy again, which I have not done in 6-7 years. I have also found meditation helpful in managing stress. Because I am very sensitive to heat, I use a cooling vest. It is a lifesaver.
#3: Who/What has been your most important support system?
My wife is my support warrior. She has been amazing through this whole journey and I can’t put into words what her love means to me. Her strength and support have gotten me through these last 10 years.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I still use a walker. Although I have become more dependent on my wheelchair. Also, my Bioness L300 Go FES (functional electric stimulation) device has kept me walking in spite of my foot drop.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
My wife keeps me positive and motivated. She also has supported me through all the lifestyle changes I have made. Which affect her as well, like changes in my diet and planning my needs. In addition to making music, meditating, and staying as active as my disability allows, I also engage my brain in as much as possible like doing puzzles, sudoku, crosswords, and learning new languages.
#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 advice is pretty simple, your life does not end with your diagnosis. Even though some changes are inevitable, a meaningful life filled with beauty and fulfillment is still within your grasp! Just don’t be afraid to make adjustments along the way. Just because your goals change, doesn’t mean they are less valuable. Lastly, live life to the fullest that you are able too. Don’t stop doing things just because you have to make those adjustments to do them. If you can still walk, but need a cane, walk with a cane. But don’t give up and let life pass you by!
#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?
During the pandemic, I became a member of the RIDE Council (RESEARCH | INCLUSION | DIVERSITY | EQUITY) which is part of iConquerMS. Our mission is to both encourage underrepresented groups to participate in research opportunities. As well as be a resource for researchers to help them design, discuss, and review new and existing research initiatives to ensure they are both inclusive and accessible to a diverse community of participants.
Want to become a part of the movement? Click the box below to order your gear!
Leave a comment, and share your experience. We would love to hear from you!