Forty-five years ago—in late August 1980—I’d just returned home from a business trip to Detroit. It was a long, stressful, tiring week. A day or so later, I was walking backward, and I fell. I wasn’t hurt—“no harm no foul,” right?—but it was surprising. And there was, in fact, a foul. It’s called multiple sclerosis (MS).
As almost everyone connected to this illness knows, MS is a progressive disease. We also know that everyone’s MS road is a little different. I know people who, unfortunately, moved very quickly from walking to a wheelchair. For others, the disease has progressed slowly.
My 45th MS anniversary is probably a good time to look back on, and share, the MS road I’ve traveled, and the one, I think, that lies ahead.
My MS Timeline
August 1980: Diagnosis. Over the next several years, my exacerbations (relapses) were treated with the IV steroid Solu-Medrol. For the most part, I returned to full mobility after each treatment.
1996: I began weekly injections of Avonex (interferon beta-1a), one of the first disease-modifying therapies available in the US.
Summer 2000: My 20th MS anniversary. A colleague convinced me to rent a scooter to get around the huge arenas where the national political conventions were held. I’d resisted doing this for the conventions four years earlier, but now it would have been impossible for me to handle those work assignments without the scooters.
March 2002: I was still mobile enough to travel to Lima, Peru, for business, lugging some heavy broadcast equipment with me. But, due to my MS, this would be the last of my overseas business trips.
Summer 2004: I was back at the political conventions, using a scooter in the convention halls. I could still walk several city blocks using a cane, but it was difficult and tiring.
January 2005: I bought my first scooter for occasional personal use.
February 2008: Needle fatigue. I changed from the weekly injectable Avonex to monthly Tysabri (natalizumab) infusions. This continued through April 2015. These were easy to handle and did a good job of slowing my progression.
June 2009: I was still commuting to work using public transportation, and I could walk 2 or 3 city blocks using my cane.
Early 2010: My commuting changed from mass transit to driving my car.
September 2012: I began to use the Bioness L300 functional electrical stimulator to help counter my left foot drop. With it, I could walk up and down a grassy slope using my cane.
December 2012: I retired from full-time work but, physically, I could have continued to work another few years.
May 2015: After 7 years of treatment with Tysabri, my John Cunningham virus (JCV) antibody levels rose to a level that increased the possibility of a progressive multifocal leukoencephalopathy (PML) infection. I changed my DMT to Aubagio (teriflunomide).
Early 2016: About this time, I started using 2 canes. I also could no longer walk up that grassy slope.
December 2016: I began treatment with Lemtrada (alemtuzumab). The side effects, primarily some severe fatigue, were bothersome, but the reward was worth it.
April 2018: I received my second round of Lemtrada. It helped improve my bladder control and bowel regularity.
August 2020: On my 40th MS anniversary, I was using my scooter for all but the shortest of outings. About 100 steps was about my walking limit, even with my L300 and two canes. But my MS progression seemed to have stabilized.
May 2025: I was having trouble in bed at night with increased spasticity in my legs, particularly the left one. Painful cramps awakened me, and the spasticity, at times, would force my left knee to my chest.
August 2025: A medication change and a return to physical therapy seem to have resolved the spasticity problem. I now use a scooter much more than I used to, even around the house. Overall, I’m stable. But as is typical with MS, I’m never sure what each day will bring.
Your MS timeline will probably vary. With the treatments available today, it’s likely that someone diagnosed with MS has a better chance of less disability on their 45th anniversary than I have. I certainly hope so.
(A version of this post first appeared on the Rare Disease Advisor website.)
(Image by Steve Buissinne from Pixabay)
