The Good Life, Then MS, Isolation, and Life's Daily Challenges!
Last updated: April 2023
I was living the good life, traveling, hanging with friends, and family, and just taking on whatever I chose whenever I felt like it. Then life began to change slowly as the years passed.
Wondering what others thought, I asked my fellow MS friends how their day-to-day has changed over time. I wasn't surprised hearing the challenges everyone faced, although how differently each of us dealt with the challenges was.
What MS life changes look like
As we all know, MS does impact each of us uniquely physically and emotionally. The impact emotionally for most I talked to was the day-to-day life changes. That luxury of being able to enjoy events with family and friends and participate in a spur-of-moment activities is lost. Most spoke about becoming isolated and alone, and feeling the loss of a fulfilling life they once enjoyed.
Another challenge mentioned was the battle of being fatigued and having to limit activities to the most important, and postpone some to tomorrow. Along with fatigue were the typical daily pain of just moving around and weakness in their legs, making it hard to walk. Life decisions now require an analysis of "can I or can't I," rather than "just do it."
How my life changed
My life changes were slow and gradual over a 26-year journey. Slowly it did seem it was just life catching up with me. I accepted the changes and adapted to my new normal and went about my day-to-day activities.
As life moved on, I continued to adapt until my changes began to truly make my activities and my effectiveness at work begin to diminish. At this point, my ability to walk a straight line wasn't possible without a wall or window walking. At that point, my five-year MS medical journey began, ending with an MS diagnosis.
Reacting to my diagnosis
For many the diagnosis of MS comes as a shock. There's the wonder of what to do and how life will change. In my case, probably due to the long journey, I was relieved when I heard, "you have MS." My thought was: now we know, let us develop a plan for the future, and determine how to treat and slow progression.
I give credit to my parents who raised me to be positive, take on challenges, and never give up. So, how did I determine where to go from here?
The first was to determine what type of MS I have to outline a treatment plan. I started physical therapy once a week for four months, beginning a DMT, and defining which symptoms I was experiencing.
After the first year, we compiled all of the information to define what worked, what didn't, and the physical impact on my overall health. After a week's review of the data by two independent neurologists, MS specialists determined the MS type I had is PPMS. This allowed us to define a final plan and a vision of what my potential progression might look like.
I would encourage you to take a proactive approach now or when you are first diagnosed. Defining the next steps may help slow progression or reduce symptoms.
It isn't easy, presents challenges, and rearranges your life at times. However, tackling MS head-on and doing the right thing can help us live a full life.
Thanks again for your time and for reading the article. I look forward to hearing how you handle these situations. Together we can make our MS journeys a little easier by sharing our experiences. Please pass on a little kindness, a good deed, and thank you for doing so. You’re making the world a better place.
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