Driving My MS

In early 2009, I decided to buy a new car. 

The previous few years had been a whirlwind of events, including the birth of our first child, big career changes, finishing grad school – all sandwiched in with being diagnosed with multiple sclerosis.


I didn’t necessarily consider the car purchase a reward. My previous one was ten years old and becoming unreliable… it was time.

So, in February of that year, I traded in my old ride for a new one. 

For over 20 years I’d been driving daily. The long treks to and from college, navigating around Northern Virginia traffic, road trips and then the more genial experience of tooling around San Antonio.

I never saw an abrupt lifestyle change coming down the road.

The stress and fast-pace of my job was contributing to relapses and subsequently more doctor appointments. To ease the burden, I started to regularly work from home three days a week.
On the weekends, most of the driving was now done by my wife.

Within a year, I was no longer working, so the only time I was in my car was driving to a doctor’s appointment, or when I ran the seldom errand.

My “new” car began to sit idle in our driveway.  As of today, nine years later, it has only 24,000 miles on it.

To put that into perspective, the average car mileage in the U.S. is 14,000 miles per year

So, it was a surprise when one day, it wouldn’t start. I called roadside assistance, they came out to jump start my car and I went and had the battery replaced.

About a week went by, I got into my car... and again, it wouldn’t start!!

I was stunned. 

Again, I called roadside assistance, but this time, I had it towed to the dealer to see what was wrong with it. They called me back to let me know that all their diagnostics came back ok. But what he said next caused me to chuckle with embarrassment.

“Your car… it needs to be driven more.

And, with that, the mystery was solved.

Some cars endure so much mileage they quite literally get run into the ground. For mine, the situation was reversed; it was dying a slow death from rarely being used. Basically, if you don’t use it, you lose it.

My automobile experience, while frustrating and bizarre was also a reflection of the dramatic impact MS has made on my life.

Having my car break down is one thing; but I fear the same happening to my body.

I’ve already had body parts stop working on me. Optic neuritis caused a myriad of vision problems, some of which have never fully left. Another previous exacerbation makes it difficult to fully grip things with my left hand and anything I touch feels very rough, like it’s covered in sand paper. 
On most days, my left foot drags behind me, trying to keep up on even a short stroll down the street.

If you don’t use it, you’ll lose it.

So, I try to stay as active as I can but it’s not always easy.

The summer heat is brutal, so walking needs to be done before sunrise and after sunset. Outdoor trips must always include plenty of cold water, cool clothes and many breaks in the shade. The fatigue from MS relegates my default mode to off.

And it’s not just a physical struggle, it’s also mental, too.

If you don’t use it, you’ll lose it.

There are no more meetings, presentations to give or conferences to attend. The endless hours spent preparing for these events has been a relief… but it’s also left a void.

I now worry about cognitive impairment, or “brain fog,” from MS.  I’ve already experienced lapses of memory, inability to focus and other cognitive issues associated with the “fog.”

As a result, I “work out” my brain regularly by reading, doing jigsaw puzzles and am always looking for other ways to challenge my mind.

Does any of this make a difference?  Will I avoid another relapse or slow the progression of my MS?
The answer is… I don’t know. But I’m hopeful.

If you don’t use it, you’ll lose it.

As I watched my car towed away, I realized I couldn’t let what happened to my dormant ride happen to me.

I need to keep revving my body and mind, resting and refueling with energy, avoiding the potholes of life and MS, as I continue along my beautiful journey of a life less traveled.
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    7 Comments

  • Sherrilyn   Sep 28, 2018 4:59 PM
    Thank you for a thoughtful post. I worry about “use it or lose it” all the time, as I try to remain mobile in the face of potential relapses. The worrying doesn’t help of course. I like your ideas for countering cognitive decline. I’ve definitely noticed a difference in my ability to focus and problem solve since stopping work 3 years ago. I miss being at work and the exciting challenges it gave my mind. I am slower now, as described by my close friends and family. And I’m worried about that too - I find my mind has become lazy and I avoid reading, which is something I used to enjoy. Thanks for the good reminder to use it or lose it.
  • Keith Johnston   Sep 28, 2018 7:04 PM
    I completely empathize with your experience and plight. I own two retail stores and the demands on my time and body are rough. Yet, those same demands keep me active and engaged, despite my slow decline to the next unfortunate plateau. I also work out several days a week, which is becoming harder and harder.

    My point? As you said, use it or lose it. I try to control what I can control, and try to be more thankful for what I have rather than what I don't (or lost).

    My advice? Fight, never submit. Challenge yourself in all you do every day and don't take the easy path because that leads to complacency and ultimately to weakness of mind and body. Faith, friends, family are counterpoints to the darkness, IMHO.

    It's lousy but most of us don't have much choice, so we have to deal with it. Your story is a shining example of fighting. Keep it up!
  • martysalo  Sep 30, 2018 9:45 AM
    I have a Traumatic Brain Injury, and many years of history living with effects, and don't drive, but live close enough to work, at a hospital, that I can and sometimes do walk home from work. My brain injury shares some things with MS. Thank you for sharing.
  • Jane   Nov 24, 2018 12:15 PM
    I so understand what you are saying , I drive 3 blocks to work and that's about it , I sure hope my car keeps moving . I agree if you don't use it you lose it ! I keep moving in the MS Gym you should check it out as the coach can help you with exercise ( any level of disability ) you can find him on youtube or face book . I encourage you to check it out as he really can help to keep you moving !! Sending prayers that your MS stayes quiet .
  • chris gulla   Nov 24, 2018 8:28 PM
    Went to pick up a food order today. I pay the store to shop for me as walking around is a problem now. On my way the engine light came on in my 13 yr old car and I thought oh no. Need the car for appointments of course. Car repair money will be hard to find. All by myself in Philadelphia.
  • Jan   Nov 25, 2018 7:24 AM
    Great post and insightful. Thank you for sharing.
  • Gary DeBacher   Nov 26, 2018 11:59 AM
    Mike, consider taking low-dose lithium regularly. You can get it in the form of lithium orotate at health outlets, or perhaps your doctor would consider prescribing the 150 mg "pediatric" capsule which I take daily. Both of my neurologists are fine about it, but there's more resistance in the neurology community than there is amongst psychiatrists.