How My Life Has Changed Along the MS Rocky Road

As we grow older along the journey of life, our road changes faster for some and slower for others. I remember my parents telling me, “Your mind stays young, and your body gets older.” My reaction was always “Ya sure it does” and yes, the joke is on me because it sure is true. Add MS to the mix, and the change of getting older takes on a whole different perspective day in and day out.

The changes were slow at first

Looking back, my changes were slow along the way. MS did play a key role, although at the time I was unaware MS was responsible. Being an athlete growing up I played football, basketball, baseball, snow skied, surfed, and was willing to try anything new.

As time moved on, like all of us, I had to earn a living and all the sports took a back seat. I did, however, stay active, and the getting old thing kept popping up. My five-mile runs turned into one mile. My night vision changed while playing softball, and following the ball became more and more difficult.

I just adjusted and kept moving on since I was growing older, and it was a part of life I couldn’t change.

Starting to wonder what was happening

Years later I fell in love, got married to my wife Ofelia, bought a house, and began to travel while we still stayed active and healthy. Although staying active, my physical changes slowly increased, yet it did not impact me greatly. Physical changes were slow, from running to riding a bike to walking, and then to a stationary bike and just lifting weights.

Around 1992 was my first strange physical change that started me thinking. While sitting in a business meeting, my vision turned into a kaleidoscope of colors, no detail, just colors. The change only lasted a minute or so, and my vision returned to normal.

Not long after the kaleidoscope moment when I was walking next to someone, turning my head to talk became difficult. I would lose my balance slightly and wander off in the opposite direction. Over time walking a straight line required me to run my finger down the hallway wall.

My changes continued and walking several blocks would require stopping to rest, clearing my foggy vision for a few minutes before continuing. This was the final straw to begin my several-year medical journey to find out what was happening.

My medical journey to an MS diagnosis

As mentioned before in other articles, my journey began with my family MD, then my cardiologist, physical therapist, ENT specialist, and lastly a neurologist. After three years of test after test, after MRI after nerve test, still no diagnosis. Even though my eye test indicated optical nerve damage and my neurology test identified neuropathy in my feet.

As luck would have it, I spoke with a friend’s cousin who dealt with similar issues, and he was diagnosed with MS. Having no idea what MS is, I began to research the cause and health issues associated with the illness. The health issues I have dealt with were so similar, I ordered copies of all my health records going back five years.

After reviewing my records, I was able to tie 80 percent of the health issues I was dealing with to MS symptoms. Once my summary was completed, I scheduled an appointment with my neurologist. During the visit, I shared my report, indicating I felt MS was the issue. My neurologist felt that wasn’t the case.

I requested to have my MRIs reviewed again and requested he order a spinal tap. Once the spinal tap fluid was analyzed and the last two MRIs reviewed, both indicated that MS was very likely. A referral was issued to the Colorado University MS center for additional tests and previous test results to be reviewed. After a month, I was officially diagnosed with MS.

Where I am today

Today, 15 years after my diagnosis, I have adjusted over the years and am living every day to the fullest. With PPMS, your symptoms just continue to progress over time. Unlike RRMS, in which symptoms can raise their heads and then reside.

Life has changed in the long run from no need to plan to planning everything you do day in and day out. The days of getting up and taking off are over. Now it has become: what are we doing, where is the location, how long will we be gone, is there a bathroom nearby, how many catheters do I need to bring (MS stole my bladder)? To mention a few.

Traveling out of town turns into an even longer list adding medication, potential medical needs, and MS medical support locations just in case the need arises. As you well know and can see, life has changed and become a bit more than jump and run. Still, even with all the added tasks and foresight needed, I think it's possible to make a smooth transition.

Thank you for your precious time and for reading my article. I look forward to hearing your thoughts and about your journey. Until next time I encourage you to pass on an act of kindness to make someone’s life a little brighter.