Guest Voice: I have MS, but you can still lean on me

Life wasn’t just good; it was great. I had the perfect balance of a successful career, a wonderful family, and great friends.

After earning an engineering degree and a Master of Business Administration, I launched a rewarding career in the technology industry. I was a leader in my community, was elected to the city council, and served as chairman of the board of directors at my children’s school. My love for athletics prompted me to coach my children’s sports teams, and I spent Friday nights officiating high school football games.

At the age of 42, after experiencing numbness in my left arm, I was shocked and devastated to receive a diagnosis of multiple sclerosis (MS). My research showed that men diagnosed at my age often face severe mobility issues, and I was deeply concerned. I immediately began disease-modifying therapies (DMT) and physical therapy to fight the disease. As my MS progressed and began to affect my gait, I became desperate for a solution.

I signed up for a clinical trial of a new intravenous drug that eventually became known as Ocrevus (ocrelizumab). Unfortunately, I was given the placebo. I had to stop my regular DMT during the trial, which proved to be a critical mistake. A new lesion formed on my spinal cord, drastically affecting my mobility. By age 52, I was in a wheelchair and had to go on permanent long-term disability.

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Now, at 62, I’m a quadriplegic. I require a Hoyer lift to get in and out of bed, and need help with all my personal care needs. But this journey has opened my eyes to the many blessings around me. I can lean on my friends, family, and faith to provide the support I need.

My goal now is to make the world a better place than I found it. It’s amazing what we are capable of doing with technology, even when MS has taken so much away.

With my assistive technology, I can still have a significant impact on the people around me. I can operate my wheelchair completely through a head array, a device that also connects to my computer and phone via Bluetooth. This technology provides the independence to control my entire environment — from my TV and music to the heating and cooling and video doorbell. I can even read and write books, enhancing my life in countless ways.

Strong mental health is critical as we navigate these challenges. We must remain focused on what we have, not what we’ve lost. Life isn’t always easy or fair, but don’t fall into the trap of feeling like a victim. We cannot always control what happens to us, but we can control how we react to it.

I recommend determining your purpose and your identity. You may have MS, but MS does not define who you are. Find what brings you joy and avoid negativity.

My purpose is to be a great, helpful friend to all and an example of how to handle adversity. People can lean on me.

Life is great again!

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.