In August, I'm celebrating a big birthday and an MS anniversary

At almost 75, I'm reflecting on the milestones in my multiple sclerosis history

by Ed Tobias | August 4, 2023

“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.

In about a 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 (MS). And it’s the seventh anniversary of this column. They make up a trifecta that calls for some reflection.

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 was 64. In my mind, I’m 25. Well, maybe 50.

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 (DMTs) 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. But 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.

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:

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 columns.

At two columns a week, I guess I’ve written more than 700 for MS News Today. I’ve written about scooters and swimming, cruises and canes, treatments and travel. I’ve even written a food review. 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, typing.

I’d love to read your comments below. You’re also invited to visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ian R

Happy 75th birthday.

McCartney has just turned 81. Mick Jagger has just turned 80 and was out clubbing to celebrate his birthday (and the health experts tell us that smoking and drugs are bad for us!).

Much of life is about luck. My aunt died of MS in her early 50s (in the 1990s). Her MS progressed rapidly. Others have a slower progression. Unfortunately it is a chronic progressive disease for all of us ie we all continue to get worse, just at different rates.

Luck also plays a role in our employment status. Like you, my profession was about writing so I could continue working for a long time after diagnosis. But what if I’d been in the construction business eg a roofer, or a professional sportsman!

I wish you well for the future. I think they’ll be treatment to halt progression in the near future and perhaps therapies to encourage a bit of repair.

Ed Tobias

Hi Ian,

Thanks for the (almost) birthday greeting. You're absolutely right about luck. I worked with people who have done better than me with their MS and a couple who have done much worse. I've never been lucky with the lottery so maybe some of that luck has kept my progression relatively slow.

Thanks for your well-wishes and, as they sang in Guys and Dolls, may "luck be a lady tonight."

Ed

Charles

Ed,

Thank you for sharing your MS journey with the team here, and thank you even more for your continued positive perspective! I myself have had MS for 16 years, and MS has tought me much about the value of positive perspective. Thank you again for sharing yours, Ed! I appreciate you!

-Charles

Ed Tobias

Hi Charles,

As I've said a few times on this website, life isn't about hiding from the storm, it's about learning to dance in the rain. I was never a great dancer, even when I was healthy, but I keep trying. I'm really glad you like what I've been writing and I'll try to keep on keepin' on.

Ed

Cynthia MacFarlane

I will be 74 in a couple of weeks. I was diagnosed in 1987 .... but , looking back, had symptoms in 1968.Started using a cane , then a rollator , and a scooter for shopping or when there was more walking involved. Timeline similar to yours. No DMT's , but took Fampyra for 8 years or so.I got Covid last August and have not yet completely recovered ..... much better lately , but still get a Covid day here and there. My right leg ( the worst one) was paralyzed for a few days and goes very "wonky" sometimes.I had to use a power wheelchair in the house , and now go between it and a rollater .I thank God every day for the ability I have.My mother (who had Parkinson's) used to say " what's a 15 year old doing in this old body ?) That's the way I feel. I can't do most of the things I used to be able to , but my spirit is still young !Thanks for your column !

Ed Tobias

Hi Cynthia,

Thanks for sharing your experiences and I'm sorry that your road seems to have been a bit bumpier than mine. You're mother's expression is perfect. I prefer to think of myself as a 40 year old but I think my wife would go with the 15 year old description for me.

Glad you enjoy what I write. I'll stay at this keyboard as long as I can.

Ed

John McCann

Ed,Congrats on your upcoming milestone. You are a complete legend and total inspiration to me. Long may you continue to share information, your thoughts and experiences with us. It makes a real difference.

Ed Tobias

Thanks, John. Your comments are a great (almost) birthday present. Certainly better than a tie. Of course, who wears ties anymore???

Ed

Celia Kulrich

Happy Birthday! i celebrate every morning with gratitude for the positives in my life. we must work with what we got.

Ed Tobias

Thanks, Celia. Yes, each day is a cause for celebration...but I might celebrate just a little harder on the day that's coming up :-).

Ed

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