“Will you still need me, will you still feed me, when I’m 64?”
Could Paul McCartney have imagined what life would be like at 64 when he wrote that iconic lyric as a teenager, or when the Beatles recorded it in their early 20s? I never could’ve imagined it when I was a teen, or even when I was 40.
Later this week I’ll be 75, more than a decade older than McCartney’s lyrical demarcation age. August also marks my 43rd year traveling the long and winding road (sorry, I couldn’t resist) of multiple sclerosis. And it’s just past the seventh anniversary of this blog. They make up a trifecta that calls for some reflection.
75 is my new 50
Despite my age and my MS, my body doesn’t feel that bad.
I try to exercise using weight machines a couple of times a week and swim when I can. It helps both body and mind. Sure, my legs are like lead and I use an electric scooter. But like the Beach Boys, I get around. I’ve traveled to more than 45 states and more than two dozen countries over the years. It can be a challenge, but hey, everyone has challenges. And on my scooter, I usually go right to the front of the line at airports and attractions!
I’ve been married 47 years, and my wife and I have a wonderful son, daughter-in-law, and two super grandkids. I worked full time until I passed 64. In my mind, I’m still 25. Well, maybe 50.
Four decades of MS anniversaries
I was diagnosed when I was 32 and working in the news media. I continued doing that, full time, for the next 32 years. The only question I can remember asking my neurologist when he told me my diagnosis was, “Will this shorten my life?” He gave me the answer that — incredibly to me — is the same one people get today: People with MS generally live about five to 10 years less than healthy people. At age 32, that didn’t seem too bad.
The Centers for Disease Control and Prevention report the average life expectancy for a man in the U.S. is just a tad over 76 years, so I’ve already beaten that “five to 10 years less than average” prediction.
There were no disease-modifying therapies when I was diagnosed. They didn’t arrive until around 1995, when I was fortunate to have been in the Stage 3 clinical trial for one of the first, Avonex (interferon beta-1a).
Unfortunately, I was on the placebo and had been self-injecting with saline for a couple of years. Fortunately, the trial was so successful it was ended early and I was put on the real stuff. But for the first 15 years that I lived with MS, there was no treatment that could stop my progression. I wonder where I would be — how I would be — had there been one.
My long and winding road
I’d say my MS road was more bumpy than winding, or more like a roller coaster. That’s probably the case for most people with MS. This illness treats each of us a bit differently, but here’s a brief map of my road:
- August 1980: Diagnosed.
- 1996: Began Avonex injections.
- Around 1998: Started using a cane occasionally.
- Summer 2000: Rented an electric scooter for a business trip.
- Summer 2004: Walked several city blocks once with a cane, but it was difficult and tiring.
- January 2005: Bought a scooter to use occasionally.
- Early 2010: Switched from riding the subway to driving my car to commute to work.
- September 2012: Started using a Bioness L300 to help counter my left foot drop. Using it and a cane, I can walk up a short hill.
- December 2016: Began using two canes all the time and my scooter much of the time.
- May 2018: Stopped using any DMT after having been treated with Avonex, Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab).
- August 2023: I’m using two canes in the house. Outside, my scooters are my legs. My wife and I are also planning a cruise to the Mediterranean and Adriatic next year.
Thanks to better diagnostic tools and the very effective DMTs that are now available, the MS road traveled by someone diagnosed today is likely to be quite different from mine, and probably smoother. But despite its bumps and potholes, I’ve had a pretty good ride. And I’ve written lots of blogs.
Hundreds of blogs from my keyboard
At a blog almost every week, I guess I’ve written about 350. I’ve written about scooters and swimming, cruises and canes, treatments and travel. I’ve even written a food review and an MS book. I hope that I’ve helped people live with their MS as well I’ve lived with mine.
I wonder what’s around the next bend, personally and professionally, but with the continued help of family, friends, my neurologist, and my readers, at 75 I plan to keep on living, learning and, of course, writing.
(A version of this post first appeared as my column on the MS News Today website.)
