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.

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

Why It’s Important to Observe Your Diagnosis Anniversary

Four decades of MS

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.

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: Am using two canes in the house. Outside, my scooters are my legs.

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.

Hundreds of columns from my keyboard

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.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

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."

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.

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.

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???

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 :-).

Caroline Borduin

Thanks for participating in that trial - Avonex was the first DMT I used in 1997 after my diagnosis.

Ed Tobias

Hi Caroline,

Ah...another Avonex thigh-jabber. I hope it helped you. I think it helped me for several years until I got needle-fatigue and moved to Tysabri.

Thanks for your thanks,

Breitman Patti

Happy Birthday! And thank you for so many helpful columns over the years.

Ed Tobias

Hi Patti -

I'm really glad what I've written has been a help and thanks for the birthday wishes.

Lorraine

Thank you sir for providing your input to us all who either have MS or is a caretaker of a loved one with MS. I enjoy reading your updates and articles. Happy Birthday to you! 🎉🎂

Ed Tobias

Hi Lorraine,

Thanks for your kind comments and I'm glad that what I write is useful. I used to tell people that I'm not old enough to be called "sir," but I guess I am now!

Nancy

Congratulations and Happy Birthday Ed, that’s truly a milestone in so many ways!
Nancy

Ed Tobias

Thanks, Nancy. I'm looking forward to a big strawberry shortcake birthday cake in a few days. Maybe a couple of glasses of wine, too.

JEFF GULLANG

Ed,

Awesome note again! Enjoy your notes everytime I see a new one.

I am curious about your avonex placebo time. Were you upset about not being on the medication? Curious as I thought before about doing a trial but did not want to get the placebo.

Any advice about others considering joining one?

I just celebrated my 20 year anniversary. Guess I need a few more years!

BTW happy birthday!

Jeff

Ed Tobias

Hi Jeff,

Thanks for our kind words. I'm glad you like the stuff I write.

As for the Avonex clinical trial...I JUMPED at the chance to participate when it was offered. (I could still jump, then.) Remember, at the time of the trial there were no DMTs...nothing that would stop my flares. So, the potential benefits far outweighed the possible risks and it didn't matter if I might be on the placebo because I knew, if the trial was successful, I would be first in line for the real medication.

Everyone is different and what was right for me might not be right for you. But I certainly wasn't upset about being on the placebo. Rather, I was excited about simply being able to have a shot at the real shot quickly.

Pam Kachadorian (please just use Pam K-thanks)

I’ve been looking for “older” folks with ms for a while but was about to conclude that there are no other elderly people with ms until I saw your post today-I was overjoyed to put it mildly🤗 In a couple of days I turn 78 with amazement and gratitude that I got this far. In 1968 when I was diagnosed at 22 (after off and on episodes of “there’s something wrong in my head” since I was about 12 and being brushed off as being a silly teenager or a neurotic) I had little hope of seeing my far off 70’s. When I finally had a definitive episode of double vision, loss of any action on one side of my face, some nystagmus(sp?) I went to a Godsent neurologist in Illinois who gave a quick definite diagnosis and much time helping my husband of 6 months and me deal with it. This was the beginning of my long journey with ms (more later if anyone’s interested)-don’t want to go on and on here where I’m saying “hi-so glad I found you!” Pam

Ed Tobias

Hi Pam,

Wow, you have me beat by 3 years in real age and 12 years in MS age. It's very rare that I find someone who's traveled this road longer than me, so my hat's off to you. Where would we be without our great neuros? I'm so fortunate that I also have had one of those for over 25 years.

I'm glad that you found this old man. Please keep in touch.

Virginia Endres

I'm 78years young this year. I was DX with MS in1993.I can walk with walker. I was wondering why you
don't use a walker?? Two canes is accident waiting to happen.
I was also DX with Systemic Mastocytocytosis in 2007. That condition caused a Mastocytoma in the
Clivus of my brain.And to top it off I was DX with Dysautonomia in 2017. This condition rides piggyback
on other Neuro conditions. Yes that's what the article said.
So all in all I should say I'm doing very well considering everything!

A very Happy Birthday 🎂 to you!

Ed Tobias

Hi Virginia,

I'm glad you're doing very well despite all of those hurdles. Bravo to you.

I don't use a walker because the canes are easier for me to use in the limited space of my apartment and for short distances, such as from my scooter to my chair in a restaurant. Also, I can't haul walker with me on the scooter.

Thanks for your birthday wishes,

Kim

Happy birthday,Ed! I’m preparing for 66 here pretty soon & still look in the mirror expecting the goth girl listening to Ozzy & Alice Cooper look back at me, but there’s an old crippled lady in there! Who is she? Someone who lives here now. Oh well.

Ed Tobias

Hi Kim,

Ozzy and Alice??? For me it's more like Joplin and Dylan, and Moody Blues!

I looked in the mirror today and decided I needed a haircut :-).

Thanks for the happy birthday and remember....you can still get your kicks - at age 66!

Heather Sachs Ryan

Hi Ed - Congratulations on your milestones! I really enjoy reading your column - you've been my "first ms read" for some years now; through you, I learned about the neural sleeve from Cionic. I was literally ready to purchase a bioness device but I now love my neural sleeve. I spent 2 weeks in a wheelchair (spastic thigh muscles) in 2019 but with the help of an amazing PT and Ocrevus (and a "thick" (stubborn!) nature, I can now walk 2.5 miles a day, with the help of my standup rollator and my neural sleeve. I have to thank you for your reporting...without you, I would not be doing nearly as well as I am.

Long may you roll!
Heather Sachs Ryan

Ed Tobias

Hi Heather,

Thanks so much for writing. Knowing that something I wrote tipped you off to something that made such a significant difference in your MS life really makes my day!

Keep on reading and I'll keep on rolling and writing.

Ginny

Yes, happy birthday! I agree , you are a legend and so appreciate your columns. I first found you when I googled MS news and "MS News That Caught My Eye" came up. I subscribed immediately after perusing it.....All the best to you!

Ed Tobias

Thanks, Ginny. I hardly think I'm a legend, but I guess if someone hangs around somewhere long enough the title might apply. I do appreciate that you appreciate what I write. It makes my day and keeps me at this keyboard even when, as I wrote in a column a few years ago, "I'm too tired to write tonight."

Kyle Wendel

Ed,
I really, really appreciate your documenting your "walk" with MS. It is an inspiration to those of us out here who really tend to progress in silence. It's nice to hear stories that I can relate to.
I'm in my 60's, and I'm curious about what your decision was like to stop DMTs. I know that there is a study going on, but as we all know, we have the ever present question in our mind "Is it doing anything for me?" I know it's done something over the 20 years I've known I had MS. Anyway, the question maybe is, was it a hard decision?
Thanks so much for all you do,
Kyle

Ed Tobias

Hi Kyle,

Thanks for your thanks and I'm glad that what I write may have been useful to you.

No, it wasn't difficult to stop my DMTs. That's because Lemtrada was supposed to "rebuild" my immune system, so that all of my rogue B and T cells would be wiped out and replaced with normal cells. This doesn't always happen after the standard two rounds, and I'm not sure if a third round would have left me any better than I am, but my progression after the two was slow enough so that I didn't see a need for a third. So, it wasn't a hard decision.

On the other hand, I don't believe that age should present a barrier to starting a DMT and I'm very glad that my neuro was fine with my decision to start Lemtrada at the ancient age of 68.

Arloa Raffler

Happy, happy birthday. I just turned 75 in June. I am thankful we both made it this far. I am just look at getting an electric wheel chair . Thank you for all you do to support and encourage people with ms. My aunt died in her fifty's from ms. My mother also had ms. I am thankful she never knew I had it. Enjoy your new year at 75, and God Bless.
Arloa

Pam K

Hi Ed…what a birthday gift to open this up and find my first post back up here with a reply from you! This place, which I just recently discovered, is a tremendous find for me because I’ve been looking and looking for others kinda like me. I feel so out of step with people since I can’t do all sorts of things like others my age. I can no longer be depended on to be a worker, a volunteer, a physically helpful friend, an appointment keeper because every morning when I wake up is a new adventure-is it an ms day or a “normal” day? Always wondering if there are other people who are dealing with this too. On to cheerier things-do we share a birthday? Whenever yours is have a happy one. And do I have cause to remember you from tv news because your name is ringing a bell. .Pam

Ed Tobias

I don't know, Pam, do you remember me from the news biz? I spent most of my career in Wash, DC - first at WASH Radio, than WTOP all-news radio, then at the Broadcast Division of the Associated Press. Prior to arriving in DC in Jan 1973 I worked at WFAS Radio in White Plains, NY. There was also a Dick Tobias who worked as a TV anchor in Rochester, NY for many years, but he's no relation.

Pam K

Hi Ed-WTOP all-news radio is a pretty good bet. Thanks Pam

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