My Wife Says I Should Follow My Own (MS) Advice

Columnist Ed Tobias wonders if his MS is getting worse or if it's the aging process

by Ed Tobias | September 23, 2022

I have to be honest: I haven’t always been honest. I don’t always practice what I preach.

My wife called me out on that as we watched an interview I did recently about multiple sclerosis on Montel Williams’ podcast. “You should follow your own advice,” she told me. She’s right.

I’ve always been a “let’s all look on the bright side” kind of guy, at least in public. I encourage people to get up and go. Use a cane, ride a scooter, learn to dance in the rain. Do what you have to do to live a good life.

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Although I talk the talk, in private I’m not always walking the walk. After living with MS for over four decades, it’s getting tougher and more frustrating. My get-up-and-go has pretty much gotten up and gone. It’s literally getting harder to walk the walk.

Something that takes a healthy person five minutes to do takes me 15. Carrying something as simple as a bowl of ice cream is a challenge while using two canes. Frustrations surface more frequently. My mood changes often. On many sunny days, I’d rather sit and write this column while looking out the window instead of going outside and enjoying the weather.

Tests tell the full story

My 25-foot walking test has been good. My rate is as quick as it’s been previously. But I’m sure I’m slowing down. My MRIs have been stable for years, but my spasticity troubles me now more than ever. I’ve had hip and leg pain for months. Sleeping well is hit and miss.

Is it my MS, my age, or my meds?

I don’t think my MS medications are as effective as they once were, even though I’ve recently resumed taking some. Maybe it’s a lack of exercise. Or, maybe I’m just at an age when things start to fall apart.

In a town hall discussion on aging sponsored by the International Organization of Multiple Sclerosis Nurses a few years ago, nursing researcher Marijean Buhse made an interesting point that was discussed in a piece by MS Focus Magazine: People with MS are now viewed as being old by as early as age 55. Buhse said the long-term strain on our bodies from having a chronic illness like MS, as well as the aging of our kidneys and livers due to the processing of medications that treat MS, takes a toll. That makes me wonder if at 74, taking three of four meds to treat my MS symptoms, plus a couple for non-MS problems, is the best thing to be doing.

Time for a change of scenery?

Another point Buhse emphasized was how important daily exercise is for people with MS. “Just move it,” she commanded, meaning, do anything that gets you moving and keeps you moving.

I split my time between Florida and Maryland, and I am more active in the former than the latter. I swim and exercise at the gym while in Florida. My body and mind both feel better there. That’s been true since we started spending winters there about five years ago.

Currently, we’ve been away for nearly five months. It’s a good thing we’ll be returning in less than a month. I hope I’ll be able to resume following my own advice.

You’re 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

Maria Edite. Ribeiro

I have MS since I had 36 years I am 66 now
I tale everyday fingolimod
But I just want the cure

Ed Tobias

Hi Maria,

I think we all hope for a cure. I doubt one will be found in my lifetime but, since you're only 36, I think there's a good chance you will see one someday.

Paula mieczkowski

I laughed like hell! I think it’s both aging and ms. I’m basically lazy. Don’t exercise or get out much because I’m content with my life at 71. I do whatever the hell I want to.lol. If not now..when. Most of the summer I spent riding my scooter to the grocery store about a half mile away. Now today it’s only getting to about 65. Might go to drugstore across the stree and video gaming joint to turn in my monthly 5$ worth of scratch offs which usually affords me another month’s worth. Check out the single old men too!lol. You’re never too old for love. Which btw I’ve been lucky enough to experience several times in my lifetime and hopefully again. I digress. Another good one Ed!

Ed Tobias

Hi Paula,

You're right. At our age we should be able do, in your words, do whatever the hell we want...even checking out the single old men or women. Thanks for taking the time to drop a note and glad you liked this one. I think you'll like the next one, too.

Susan

I can certainly relate Ed. 70 years old and living with MS for 44 years. Stopped DMTs about 10 years ago. On meds for symptom mgmt only. MS has been on my right side (only) until last year. Started w/numbness and tingling in my lower left leg after Covid booster last Nov that is still there. Coincidence? Who knows.
Enjoyed your chat with Motel very much. Be well!

Ed Tobias

Thanks, Susan. Each of us deals with MS in our own way and, with each of us having done that for over 40 years, I think we're each entitled. Sorry about your left side problems but we just keep on keepin' on, right?

Kim

Ed, my thoughts exactly. I am 65, living with MS for 19 years. Spend the better part of each day wondering if I’m getting old,worse, or both. You are a wonderful writer & I’m sure in tune with many of us.

Jonn Rivv

When I read some of your articles, it gives me inspiration. My wife found out she has MS just 2 years ago and she
has been in a terrible state of depression. I try to encourage her to do small things and move her muscles but
to no avail. She just spends most of her days in her bedroom and only walks to our kitchen for one meal a day.
I tell her about how you have coped for all these years and hope she is encouraged but she doesnt care. I think
she is her own worst enemy, but keep up your good work and maybe one day she will care.....Thanks Ed
Regards,
Jonn

Ed Tobias

Hi John,

I'm glad you think what I write helps you and, by extension, your wife. We're all in this together.

Next week's column is about an adventure my wife and I had Saturday night. At the very end you'll see how it makes me think of what you've told me about your wife. You might want to share it with her.

Carolyn A WALSH, MSN, RN

I'm glad you put into words how something that takes a healthy person 5 minutes takes you 15. How true, except it's now taking me 30! I read your blog when I can, to find out how you deal with your MS issues, or how others with MS, who write to you, deal with theirs. I find your honesty encouraging and refreshing.
It's helpful to know that others are as frustrated as you are with this chronic disease. I've been relegated to SPMS from my former RRMS. I've had the disease since Dec. 1990. What did I expect? (Probably nothing short of a miracle!) But I'm spiraling down more quickly than I'd like to. I need to find some helpful resources, like getting a scooter for mobility since the cane is losing ground. I want to be outside, not inside writing as you mentioned. I've also enjoyed your writing about living between two places, Florida and Maryland. Your perspective is interesting and encouraging. I'll gladly keep reading your blog, looking for different insights and perspectives from you and your readers. Thank you for all that you (and your wife) do for those of us with MS. Keep on sharing, please.

Ed Tobias

Hi Carolyn,

It's always good to hear from you and this note made my day. It's confirmation that what I'm doing is worthwhile. Of course, I'll keep sharing as long as you keep reading.

Please check out next Friday's column. I hadn't planned it this way, but it's sort of a follow up to last Friday's.

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My Wife Says I Should Follow My Own (MS) Advice