Growing Old with MS
I hate to admit it, but I’m getting kind of old.
That’s not to say that 68 is really old, but I’m probably older than a lot of you who are reading this. I’m also 36 years old in “MS years.” I was diagnosed the month that Ronald Reagan won the Republican nomination to run for U.S. President, August of 1980, so I’ve had MS nearly half of my life. My MS and I have traveled down lots of roads together.
Are there common mechanisms that older folks, like me, have used to handle our multiple sclerosis that younger MS patients can use to improve their own later lives? That’s what researches at Memorial University in St. John’s, Canada, set out to discover. They surveyed nearly 700 of us who are older than 55 and who’ve been living with MS for more than 20 years. The researchers then looked for common factors that allowed us to age relatively well, even with our MS. It’s hoped that learning from these experiences can help young and middle-aged people with MS live better lives as they grow older.
Seven themes were identified in the research report which was published in the Multiple Sclerosis International journal last August: social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances. But the first three jumped out as being the most important:
Social Connections
Social connections was the most common factor that participants said contributed to their healthy aging. This included relationships with family, neighbors, and even pets. Activities outside the home that provided opportunities for social engagement were also highly valued. They included support groups, volunteer work, and community organizations.
“My volunteer work with my dog and the hospital (patient advocacy) has kept me stimulated.” — 59-year-old woman from Quebec.
“(I value) people close to me who accept my MS and give me all the encouragement and support that I need, plus allow me to do the activities that I wish to do and at my level and speed.” — 66-year-old woman from Nova Scotia.
Attitude and Outlook
Attitude and outlook ranked second. Older people reported adopting ways of thinking that helped them cope with the challenges of living with MS. That included some very simple, simple things such as having a positive attitude and being optimistic. Determination and perseverance was also important.
“Being determined has helped – I should have stopped work (teacher grade 1-3) five years before I did, perseverance.” — 64-year-old man from Ontario.
Participants also reported that they accepted living with MS. They said they understood how to work within their limitations and to focus on their abilities. Humor and maintaining their self-identity were also important. People frequently explained, “I am not my disease.”
Lifestyle Choices
Basically, this meant they took care of their body and their mind. It included eating healthy, getting exercise and adequate rest, managing medications, and using alternative therapies.
“I have a healthy diet and get lots of rest,” 57-year-old Karen reported. “This year I am able to take Wednesdays as a sick day. This is extremely helpful. I can’t walk because I don’t have much strength in my legs. I get exercise on my exercise bike. I do 20 minutes a day. It really helps me feel better. I do not eat red meat.”
It also meant doing things like a hobby, working, being outdoors, and traveling.
Also mentioned as an important activity, and one that contributed to their sense of purpose, was searching for resources and information about MS. As someone who writes about MS, that’s good to hear.
Medical Care
Not in the top three, but something that can’t be overlooked, is health care. We’re talking about the whole health care system here. Having access to high quality care was very important to respondents. People described high quality care as care that was prompt, reflexive, and appropriate. Older people with MS also highly valued relationships with their care providers. They valued health care professionals who listened to their opinions, acknowledged their feelings, and gave them encouragement.
But there was also frustration with lack of access to treatment alternatives and bad experiences with some medical professionals.
We hear a lot of comments about this subject online.
What About You?
How do you see the next years of your life? Are you doing things today that could make a big difference as you grow older?
(You can read more of my columns on my personal website: 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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Judy
I take herbal HRT (to encourage ms protective hormone presence), various alternative things to help ms, a Mediterranean diet for about 35 years, exercycle, Yoga, meditation and hope/trust for the best.
Ed Tobias
Thanks for your comment, Judy. Being proactive about doing positive things, whatever the mixture, seems to be the way to go. Good for you!
Ed
Jen
This was an uplifting article to read as a young person diagnosed over a year ago at age 20. I am in my graduate phase of becoming a physical therapist and I don't let MS hold me back. I also am finishing out my last year of NCAA eligibility playing field hockey.
It is interesting to hear from people who have had the disease for 30+ years and the advice they can give! Any hope for our future (personal support, diets, research) helps me stay positive!
Ed Tobias
Thanks for your comments, Jen. As a good friend of mine is fond of saying, "you go, girl!" BTW, my wife is a retired PT. It's a great profession and you now have an "insider's" knowledge that's going to benefit each patient you treat.
Ed
Wayne Blevins
I have been diagnosed MS for 10years when I lost my ability to walk. I was a working farrier (horseshoer) at the time (physically stressful), and had been for 35 years. I now spend my time on promoting my own product E3Live FOR HORSES which I had found very beneficial to horses hooves while I was still a farrier. Although this is not as financially rewarding as the farrier business had been,it is helping many horses who suffer from hoof diseases such as laminitis, white line disease, and crumbly and weak hoof material. This in itself is very gratifying.
Ed Tobias
Hi Wayne,
Thanks for your comments. Since you've worked with horses I wonder if you're aware of hippotherapy or therapeutic riding? After having not been on a horse since my teenage years I got back in the saddle a few years ago, at age 64. Working with a trainer certified in hippotherapy I found that riding once a week for 30 or 45 minutes really helped my balance, and my core and leg strength.
Ed
Carolyn
Thank you for such a great article! My boyfriend was diagnosed with MS when he was around 9 years old and now at 24 he is accomplishing his dreams and more. As you know sometimes the future can be scary when a loved one has MS and we try to always keep a positive attitude when dealing with life. It is reassuring to know that "seeing the glass half full" can go a really long way! He is currently going to school for construction management and engineering as well as working on the field. Although sometimes life gets to be too overwhelming we try our hardest to take things as slowly and calmly as we can. Your article has given me a lot of hope and I cannot wait to show him this article later today!
Ed Tobias
Hi Carolyn,
Thanks for taking the time to write. I'm pleased that you liked the column and I certainly hope that it will be useful to your boyfriend. As I often say, even a pair of deuces can be a winning hand if you play the cards well.
Ed
Raziya Mohamedali
I've just noticed the dates on these comments and mine is real late!
Well, I live in Mombasa, Kenya, am Kenyan of Indian origin and have had MS for 23 years (was diagnosed) and am 63 years of age and oh, female. I am now in my secondary progressive stage, but still mobile and walking with a stick.
Unfortunately, I cannot walk too much nor stand for very long which interferes with many things that I need to do...
I live on my own and have no close family in the country and am trying to manage continuing to do so despite many challenges.
While I really enjoyed the article, we, in this country hardly have any health care to speak of and/or awareness in the general public about MS, unfortunately, so it gets very frustrating dealing with day to day life.
I prefer taking alternative medicines and am currently taking homeopathic treatment which has helped in making many of my symptoms bearable and I personally think the progression slow, too.
I don't follow any fad diets and eat what I want and also do yoga.
Ed Tobias
Hi Raziya,
Thanks for taking the time to comment. It's never too late to do that.
I'm very glad that you wrote because those of us who have relatively easy access to medical care don't realize who fortunate we are.
Alternative medicines seem to work well for some people with MS. If you search this website I think you'll find several articles about them. Yoga, also,can be very beneficial. I've done a little yoga myself.
I'd like to know more about what your life is like, living in Kenya with MS. Perhaps, if you're willing, I'll share your experiences in an article. If you'd like to tell me more please contact me directly at: ed(at)themswire.com.
Ed
Stan Quick
Interesting article. I am approaching MS from being elderly (72), and newly diagnosed. So what is truly causing my symptoms? Does not matter. What does is my attitude toward living.
Ed Tobias
And that's the right attitude, Stan.
Thanks for your comment.
Ed
Debi Freeman
My name is Debi and at 56 yes young, I was diagnosed with MS last year. Even though some days are very hard, so far I'm still able to work. I focus on, keeping going! Not sure what tomorrow will bring, but I'm going to keep going as long as I can!!!! I loved the article and appreciate all of the suggestions ❤️ I'm trying not to focus on the days that I won't be able to move, but enjoy every day for today!!!!!! Again Thank you all for the good suggestions!!!!
Ed Tobias
Hi Debi,
Thanks for taking the time to write. Keeping going is what it's all about. As I like to say, living with MS isn't about hiding from the storm it's about learning to dance in the rain.
Ed
Roger Deuxmont
I'm a 67 year old 35 year sufferer of Multiple Sclerosis Self-Rehabilited since 1996 and still walking in 2019 albeit with a Walking Cane and a Disability Motor Scooter for assistance.
RRMS1984
Ed Tobias
Good to hear, Roger. Keep walkin' that walk.
Ed
Vicki
I am a 69 year old woman who has had MS for 30 years. I so agree with you that attitude makes a huge difference as do social connections. I would like to add faith to the list. Without my faith in God I would be in a far different place than I am now. Currently I am enjoying my grandchildren, even keeping a five year old four mornings a week. We read many books and do experiments for fun. Having an active life with grandchildren has really helped me. I am blessed to be mobile, a bit slow, but still walking. I am still learning to pace myself. For those of you just starting on this journey you did not choose keep putting one foot in Front of the other even on days when it is difficult. Use a cane or Walker when necessary knowing that perhaps tomorrow you won’t need it.
Ed Tobias
Hi Vicki,
Your attitude is a good one and faith is important. Grandchildren are the best. A few years ago I helped teach my grandson to walk, as I walked backwards with my canes and he held both and walked forwards. Now he's almost five and I doubt I could keep up with him for even a few hours. Bravo to you for doing that.
Ed
Susan Wilson
Hello, I have been browsing some of your articles and see that you have had MS for quite some time. My name is Susan and I am 59 years old. My MS age is almost that at 54 or so. I had a doctor who went back through all of my medical records when I was in my late 20's and concluded that I had had MS since my early childhood. I would like to talk to you more about it if you would be interested.
Ed Tobias
Hi Susan,
I think I've laid out my story pretty well in the columns that write. You can also read a lot more about me in my book "We're Not Drunk, We Have MS." But, if you have a few specific things that you'd like to ask you can email me at [email protected] and I'll be glad to to help.
Ed
Deborah
I just read this article on Pinterest. It caught my eye as I am a person with MS. Imagine my surprise and delight when I discovered in your article the research on older MS patients was done at the university in my own city! St. John’s Newfoundland Canada.
I have been diagnosed for 17 years and I am taking medication for my pain. I tried injections for a year, but decided to stop taking them. That was 16 years ago. I have nerve pain called alodynia.
I have difficulty with my hands.
Thank you for this article. Very informative, as I am getting older (64). I am going to discuss your article with my Dr. I am wondering where I might read the full article if you have that information! I will also read more of your column on your website. Thank You for this. And greetings from Newfoundland Canada…p.s. Newfoundland by the way is the place the hit Broadway show “Come From Away” is based on!
Ed Tobias
Hi Deborah,
Thanks so much for your nice note and I'm glad what I wrote was useful to you. I wrote is nearly five years ago...so I'm now approaching 74 years old. You're just a kid!
I included a link to the aging study in my column but you could have missed it, so here it is: https://www.hindawi.com/journals/msi/2016/1845720/
I hope you find a way to ease some of your pain. Pain can be a tough symptom to crack especially if it comes and goes, as it does with me.
BTW, I know about Newfoundland and "Come From Away," which is a show I'd like to see. One of my hobbies is ham radio and I've talked with hams in Newfoundland many times over the years.
Ed