Don’t Let MS Stop You From Grandparenting

by Ed Tobias | July 9, 2021

My grandson, John, turned 5 in May, and my granddaughter, Hayden, turned 7 in June. I love being their Poppy, but I wish their Poppy didn’t have MS.

I was diagnosed with MS in 1980, just over a year after our son, Geoff, was born. He and our grandkids have lived with my MS all of their lives. I’ve only lived with it for about half of mine.

As I approach my 73rd birthday, I’ve been thinking about how we’ve all dealt with my illness and the limitations it imposes. Coincidentally, I ran across an MS News Today column that my friend Debi Wilson wrote about MS and grandparenting a few years ago.

Being a grandparent with a disability

Debi writes about how she felt inadequate and insecure as a grandparent, because her MS restricted what she could do with her grandkids. She worried that they were being “shortchanged.”

I’ve shared some of those concerns. I’ve never felt insecure, but I’ve often felt inadequate, both as a grandparent and as a parent. On the other hand, I’ve always believed that life isn’t about hiding from the storm — it’s about learning to dance in the rain.

Play ball!

When our son was playing baseball in school and other dads were coaching, I did the next best thing: I kept score. When our grandson was learning to walk, I helped by encouraging him to hold onto my canes as I walked backward. Since his toddler speed matched my MS speed, we made a great pair.

Ed teaches his grandson to walk. (Photo by Laura Tobias)

As toddlers, both of our grandkids loved to ride on my lap on my electric scooter, and they still do now that they’re older. When we owned a condo at the beach, I bought a special scooter to take them onto the sand, almost to the water’s edge, though I admit that my wife, who has a back problem, made much more use of it than I did. For them, my disability was their normal.

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I haven’t found a lot written about how to be a grandparent when you have a disability, even though I’ll bet many of us are one. An internet search turned up “My Grampy Can’t Walk,” a book for kids up to 7.

Wheelchair manufacturer Karman Healthcare has some suggestions on its website, including things like resting up before a visit with the grandkids, being upfront with them about why you walk funny, use a cane, and can’t go into the ocean waves with them, and giving them a ride on your scooter.

Debi found some suggestions of the “be a good role model” type at Verywell. She also has one of her own that I think is very important: Don’t compare yourself to other grandparents.

“All grandparents can bring special and unique gifts to their grandchildren’s lives,” Debi wrote.

She’s right. You and I are who we are. And we are special to our kids and grandkids no matter what.

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

June Maisel

My grandson just turned three and he is the light of my life. Unfortunately he lives in another state but we do see him every 2-3 months. One day he picked up my cane, started walking around with it and said “I’m grandma”!!! I cracked up. Kids have no idea how funny they are!

Ed Tobias

Hi June,

I love that. Thanks for sharing. To kids, we are who we are. And, like the old Art Linkletter TV show,"Kids Say the Darndest Things."

Joanne Perkins

Thanx Ed,
I really needed to read that today. Being a 60 year old granny of 4 really wonderful grandsons; ages 19, 15,
10 and 4, often leaves me feeling very inadequate. However, as I stop to think about It, I realize how fortunate I am to be part of the reason that they are so kind, loving and empathetic individuals!
Peace be with you, Joanne

Jan Stiens

Thanks for the article,, Ed. It is good to be reminded that having a perfectly functioning body isn’t required for grand parenting. Being there for them, having fun with them and loving them is what they’ll remember long after you are gone.

On another note, where did you buy your beach scooter. I’d love to investigate that. Thanks.

Ellen Lerner

I don't know if I should really say much about my grandchildren and my MS because it is not the MS that is the problem, I do not think. First let me say that the writer is very fortunate because he probably lives near or with his grandson. That is not my situation, I have been very fortunate that since my diagnosis in 2005, I have not had progression or a lot of issues other than what a lot of people in their 60s and 70s have. I have been off MS medication for at least two years and all seems well to me. My problem is that my two very young grandchildren, ages 2.5 and newborn are many miles away being in phoenix; I live in upstate New York. None of my other 4 children have any children of their own and they live in different places west and south and middle US. My husband and I flew to Phoenix a couple months ago in March for a couple weeks and then again a couple weeks before my granddaughter's birth in June. We stayed about a month. My husband is coming home tomorrow and i came home end of June.
What I have is an emotional situation. My daughter would like us to be near her so the grandkids and know their grandparents and we can of course help her out. She and her husband would like to find a house big enough for an inlaw area. I can tell you after almost a month living with her, I was ready to come home to my own house. We also are looking for a smaller house where we are and she is looking for a larger house where she is. The housing market is great for sellers right now but not so great for buyers. Any way it is unfortunate that life takes our family members and moves them far away. On a side note: When my first child was born I was in NYS and my mother who lived in Ohio decided to move to Florida. So she would visit now and then and I would visit her on occasion. Unforunately she became ill and passed away after my second chld was born. That is how it was. Back to the present, you are probably asking why I wouldn't want to move out to Arizona to be with my grandchidren? Should I feel guilty? maybe. Phoenix is a very HOT and busy place. While I was there we all basically stayed inside during the day. The driving is crazy there and if we did go to the grocery store my husband did the driving. Maybe I just feel the anxiety of moving locally and even worse anxiety if we moved away from where I am most comfortale and where I am already involved with medical doctors here; and the thought of starting with new doctors is rather difficult for me.
I have no siblings and I did not have a close relationship with grandparents so maybe that is why I don't feel as connected. I have friends who have children that live in California (in fact two of my children live there) and they just travel back and forth ( except for the last pandemic year.)
It is not easy and I do not expect an answer, just ranting I guess and reading this article I felt that the writer's disability can be a problem for him. He can be with his grandson which is a good situation for him.; I could become disabled someday; i just don't know, but in that event would I be comfortable living away from my home? Could living with my daughter or nearby make a new comfort zone for me? If I had to see a medical professional would it take 10 minutes for me to get to one like it does now or up to an hour in phoenix which it could easily because it is a huge place. My daughter and grandkids would like to spend summers with me because it is more tolerable; she can't at the moment. Winters are not so tolerable for my husband so he hopes to spend more time there in the winter whether or not I stay there or maybe I'll just visit. It is all a dilemma for me,

Ed Tobias

Hi Ellen,

Thanks for your comments. I ("the writer") understand everything you've written. I'm fortunate that my son and his family are only about 15 minutes from us in suburban Washington, DC. We're snowbirds and spend the winter in Florida and the summer here. Some winters they come down to see us and some they can't. Even when we're near them we don't seem them nearly as often as we'd like to.

I totally understand about wanting to continue in your own home, be near your doctors and also avoid the heat of Phoenix. As you've suggested, visits to NY by your daughter and her family in the summer and visits in the other direction in the winter might be the way to go. It would be for my wife and I. We went to college in Ithaca many years ago and know what winter is like in upstate NY. We also know how pretty NY can be for most of the year.

Anyway, I wish you well. There's no perfect answer.

Nancy Patten

As I've negotiated my ife for the past 29 years with progressive MS I've often felt inadequate and sad for the experiences I haven't been able to share with my daughter like snow skiing. Now our first grandchild is on the way and I've wondered what a grandparent in a wheelchair looks like. My go too reminders are everyone has a limitation of some kind and insecurities. Also I love to quote Stephen Hawkins who said he doesn't obsess over what he can't do but focuses on what he can accomplish. I now have another quote I'm going to live by that life isn't about running from the storm - it's about learning to dance in the rain.

Ed Tobias

Hi Nancy,

I can't claim credit for the quote. I saw something like it on a wall-hanging in a nick-nack store somewhere, but I try my best to follow that advice.

I know you'll enjoy the wonderful world of being a grandparent.

Grrri Augustin

I might not be able to run and jump with my 7 grandkids BUT together we can read, play games, cook, bake, work puzzles, snuggle, have conversations, pray, laugh, etc. Your article helped me to realize what I CAN do and not focus on CAN’T do. Thank you.

Ed Tobias

Seven, Grrri?? Wow! Our two just had a sleep-over with us Friday night and, though they were very good, were a bit of a handful. We survived. So did they. :-).

Mark Freiberg

Ed,
I have had MS since 1976 and was paralyzed from the chest down in 1978. It is a rare thing to find someone that has lived with my partner (MS) for as long as I.
I am a currently licensed, board certified veterinarian. I stopped working full time August, 2020. I plan on remaining active and productive. The cool thing is that we will see a cure in our lifetimes!
I am an active investor in early and quite volatile biotechnology companies. Being active makes me privy to research data that does not reach mainstream media. New AI technology has allowed discovery of fantastic new therapies. The holy grail of MS has always been re-myelinization of our shattered nerves. Such a therapy now exists and will soon be available for stage 1 testing with the FDA.
Mark

Ed Tobias

Hi Mark,

Thanks for sharing all of this. I'm glad that you've been "dancing in the rain" too. About AI...interestingly I highlighted a story, in my "MS News That Caught My Eye This Week" column today, about an AI Supercomputer in the UK that's working on the discoveries you indicate are on the horizon. I'm excited that you think re-myelinization isn't far off.

BTW, my wife and now living with a year-old Maine Coon cat. What a handful! One minute he's a lap cat and the next he's a terror...playing rough, the way you would expect a kitten to play but, as you know, everything about him is big: size, claws, teeth. Quite an experience for a couple used to either a Cocker Spaniel or a Bermin.

Carolyn Walsh, MSN, RN

Ed,
Thank you SO much for writing down your thoughts. I needed to hear how others manage the sayings and feelings of the children and grandchildren. My daughter, who's 46 now, does not see me for what I am,...a handicapped 71 year old woman. She doesn't understand the daily struggles that I go through, just in doing my ADL's. She doesn't understand energy expenditure for certain tasks that she takes for granted.
Her attitudes trickle down to her 2 sons, my grandsons.
They live a little over 150 miles away in Virginia.
One of my worst symptoms is chronic back and L gluteal pain from the MS. Makes driving, sitting for a long time the absolute worst.
Additionally, my husband and I are vaccinated against COVID, and she and her family are not. All of this makes going to see her, and my step-daughter, who lives 8 miles away from her and who is vaccinated, a royal mess.
Are you still with me?
So, my bottom line is that Grandparenting is sometimes really rough. I can identify with many of your thoughts and feelings.
I was diagnosed at 40, and I'm 71 now. I've had MS almost 1/2 of my life. (I'm getting there)
Our adult children have had a long time to get used to the disease and what it looks like.
Whatever the 3 adult children think about me and my MS tends to trickle down to the 6 grandkids.

My husband and I are always looking for new ways to "be" grandparents. That alone is exhausting.
I thank you for opening up this line of thinking and problem solving, or just a way to vent and listen to others' problems.
People don't stop and think what it's like to be "getting up there" and have an invisible chronic disease.
Even your adult kids.
So thanks again for this opportunity, and may God bless you on your journey,
Carolyn Walsh

Ed Tobias

Hi Carolyn,

A royal mess, indeed. (Or, a pain in both of your glutes!) But, you're not alone. If you look at some of the other comments to my column you'll see you're not the only one with distance and/or acceptance problems. And, I read them all the time in Facebook groups.

At the risk of suggesting an even greater mess, I think your kids should read what you wrote me. What would you think about emailing it to them?

I'm glad that you like what I wrote. What you wrote could make a column of its own. :-).

All the best,

Jane Morris

I have felt the second class grandparent since our granddaughter has been
Borne
My son-in-law has made it clear that we are not capable of looking after
her. I have been diagnosed since 1990 now have SPMS affecting my lower
Body. But my husband is great with her this is something son-in-law resents.
He cares for me doing the cooking a lot of the time.
Driving to see the family in Rugby we stay in hotels with disabled facilities for me.
She loves ridding on my scooter playing with nanny and grandad lots of cuddles.
FaceTime her every week.
Having started school last September and Covid have not seen her for nearly
12 months.
Looking forward to her coming with her mum end of July for a week.
This has not happened since 2014 in these years she has stayed many times with his parents who are very nice.
I have accepted more or less to be happy with what I can see of her.
When she was borne I cried for MS would be taking yet more away from us.
But reading your blog lets us no some families are successful.

Ed Tobias

Hi Jane,

I'm sorry for my delay in responding and also sorry for the difficulty that you've had grandparenting with MS. No, it's not going to be the same as it would be if we were healthy. But we each do the best that we can. I'm glad that your granddaughter loves riding on your scooter and that you're Facetiming. And, I know you'll have a wonderful week soon.

Think positive and do what you can.

Catherine Carroll

The problem is chronic inflammatory spinal pain with lack of medical care and social care as health care costs a lot of money. Multiple Sclerosis a neurological disease, that has been around from the beginning of time with no cure. Hopefully, if preventative drugs can be found to stop demyelination our quality of life would improve. I want to walk up the hills and smell a spring day when the daffodils come out

YourFull Name

If I could read your articles endlessly, I would do it endlessly. Because it's interesting and educational. I think that you have written a wonderful post, thank you for every line, every letter in this line. This is amazing

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