MS Changes Our Life, Yet We Can Still be a Positive Influencer
Last updated: May 2023
Some health illnesses are with you for a short period, then you heal and move on. MS, as you well know, sticks around forever, and changes your life. However, MS doesn’t always have to rob us of accomplishing things.
Creating a positive future
I have MS, and it has turned everything upside down today, tomorrow, and beyond. Yes, it has changed my life. But I want to look forward to the future as a bright light.
MS is not easy, presents challenges, and causes you to adapt. The physical changes of MS and how long these stick around can depend on the type of MS and how your body reacts.
Only up to 15 percent of individuals with MS have Primary Progressive Multiple Sclerosis, and I'm one of them. This form continues down the road each day and very seldom if ever gives you a break. MS isn’t any fun, no matter what form you have. That's one reason I think we need to try to stay focused and positive when we can.1
My path to a diagnosis
In my final 5-year journey to an MS diagnosis, I visited every specialist around, and my last stop was a neurologist. At this point, we still had no idea what was wrong. Luckily, I spoke with a friend’s cousin who had MS. We compared symptoms, and wow, almost identical. I researched MS, met with my neurologist, and shared that I believed I had MS.
He disagreed with my MS diagnosis. I requested a spinal tap, and bingo, MS it was. Most are shocked, wonder what the future holds, and are unsure of what to do next. My approach was: now we know, and let’s create a plan. Our 2-year plan was to begin a DMT, physical therapy to improve my gait, biannual neurologist visits, an annual MRI, and to stay active.
What did the future hold?
So how did I stay positive and focused, you wonder? My first stop was volunteering as a National Multiple Sclerosis Society MS Advocate. As advocates, we focus on improving the services available for those with disabilities, as well as advocating for improved state and federal legislation.
My next stop was serving as a Patient Advisor for the Genentech Ocrevus team. During my two-year term, our team worked to help define patient support through website design, financial support, and medical advisor needs.
Don’t forget about social media sites, which can be a great way to provide support and information to others. I think Facebook can be a great site for specific groups while Twitter, LinkedIn, and MultipleSclerosis.net can be good for general information and connecting with others.
Writing can be yet another avenue to share with others what you have learned, and what has worked well and not so well along the way. These are just a few ways I have found to stay focused and positive even with MS hanging around. I think it’s about how we view the future, and I chose a bright future!
Getting through moments with MS
MS spasticity is always lurking around the corner and waiting for that moment to take over at the most inopportune time. An MS story shared with me happened to a person as she parked her car. She opened the car door, slid one leg out, and spasticity kicked in. She then had a few minutes of laughing until her leg relaxed. Sometimes it's a laugh that can get us through difficult moments.
Once again thank you for your time, and I look forward to hearing your MS stories. Until the next time, be safe, stay positive, focused, and pass on an act of kindness to brighten someone’s day.
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