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Aging With MS: Advice From Those Who Have Been There

Posted on March 04, 2021
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Joan Grossman

Life expectancy among people with multiple sclerosis (MS) has increased notably in recent decades. However, managing MS symptoms can become more challenging with age. MyMSTeam members often share their experiences with aging and offer advice to others with MS who wonder what they can expect as they grow older.

Multiple sclerosis is a chronic disease of the brain and spinal cord, also referred to as the central nervous system or CNS. Symptoms vary among people with MS, but motor and cognitive problems are among the most common.

For some people living with MS, aging can be difficult. “Well, it is Tuesday and my battery is already drained,” wrote a MyMSTeam member. “Old age and MS are not a good combination! 😊”

Other older adults with MS have found ways to adapt to the condition and enjoy a good quality of life. “Tysabri has kept me mostly normal and the only issues I have are from old age!” another MyMSTeam member wrote.

Aging or MS Symptoms? It Can Be Hard To Tell

Many MyMSTeam members try to differentiate between symptoms of MS and symptoms of aging, but making the distinction isn’t always easy. “I am newly diagnosed (at an old age of 53). I’m trying to understand what might just be ‘old age’ vs MS,” wrote a MyMSTeam member.

“You pose a very good question,” another member responded. “I'm 56 and was diagnosed 13 years ago. I can still walk with a cane, but lately things have, in general, been going downhill.”

Some people have an easier time differentiating MS symptoms from aging. “MS seems separate,” a member wrote. “I know my specific MS symptoms and how to work around them. I don’t think my age is really a part of my MS.”

Another member put it more bluntly. “If one more person tells me it is old age, I am seriously going to choke them,” they wrote. “I should wear a shirt that says my pain and brain fog are not from old age.”

Others, however, attribute their experiences with cognitive impairment to aging, rather than MS. “Sometimes I can't focus. It's just old age for me,” a member explained.

Numerous symptoms associated with MS overlap with those of aging, including:

  • Muscle weakness
  • Problems with balance
  • Fatigue
  • Impaired cognition
  • Urinary and bowel dysfunction (e.g., constipation)

Many MyMSTeam members recognize some of their symptoms as likely coming from a combination of aging and MS. “Yes, it is difficult to tell whether it is age or MS,” said a member. “With many things, I feel it is both.”

For some people, discovering a new symptom is related to aging instead of MS can be a relief. As one member said, “Sometimes I wonder if it is old age or MS. I hear people my age talking about walking in a room and forgetting what they went in there for, or they cannot find their car keys, etc. I say to myself, ‘Phew! They don't have MS and they do it too.' I must be normal for my age. 😀”

For Some, MS Gets Easier With Aging

Research has shown that MS disease activity can decrease with aging, although recovery time from flares can be more difficult. Some people with MS may experience fewer symptoms as they get older and develop an improved sense of wellness.

One MyMSTeam member explained how their health condition has changed for the better with age. “My neurologist, along with the neurologists at the University of Florida neurology center, all agree that the disease burns itself out with the immune system slowing way down with age,” they wrote. “My last three MRIs show no new lesions, so the decision is up to me when to stop my Tecfidera.”

Another member described a similar condition. “I have had no new brain lesions in 20-plus years, and the brain lesions that I do have, have not been active for 20 years,” they wrote. “I am not on any MS medications.”

A third member relayed a similar experience. “Thanks to the biologics, Betaseron, and Tecfidera, it stopped. Now at age 70 my MS has burned itself out and this is my last month on Tecfidera.”

Making the Most of It

Many MyMSTeam members report feeling good and living full lives as they age, despite the challenges. A positive attitude can improve physical well-being and mental health. “I had my first MS event in 1964 and have experienced ups and downs for over 50 years,” said one member. “But I have been able to make MS a secondary life issue and have had a good life. I married, divorced, remarried, have 10 grandchildren, a graduate degree, etc.”

“It may be a cliché, but age is truly ‘just a number’,” another member wrote. “I still have the same interests and enthusiasm as when I was in my 30s. Sure, I'm realistic, but I still love doing the things that make life interesting.”

Another member described a long battle with MS over many years, concluding with how they are finding ways to enjoy their time in their later years. “I like to read, play computer games, and keep in touch with the world via computer,” she said. “I’m still setting goals. I will keep some and not be able to keep some, but [I] continue to set them and strive to be the best I can be despite the MS.”

A sense of humor about aging with MS helps some people cope. “Your description of MS as being a quick trip to old age is absolutely fantastic,” said one member.

Another member wrote, “You might be glad to know that if you get old enough, MS gives way to old man or … old lady problems. If that didn't make you smile at your age, I don't know what will.”

Do Your Best

Not everyone has an easy time aging with MS, and sometimes MyMSTeam members express their frustrations. “I have four grandchildren,” said one member. “They are a true blessing!! I get upset at times because I wish I could do more for them and with them.”

Despite limitations, many older people with MS benefit from spending quality time with family members and loved ones.

Another member advised others to take stock of their limitations as they age and account for their accomplishments. “I worked a year after my doctor told me I needed to be on disability. You will know when it's your time,” they wrote. “I had a good solid work background for almost 40 years and never even collected unemployment.”

Physical activity and physical therapy can be beneficial for healthy aging with MS. “I can walk short distances with a cane and brace. I used a scooter otherwise,” wrote a member who does their best to stay active as they age.

“Stay fit for as long as possible. We face a double blow: MS and getting older!” another member wrote. “Regular exercise or physiotherapy can be a great help even from early on.”

For some, sheer force of will keeps them going strong. “The doctor said I need to slow down. No way can I do that,” a member wrote. “I’m going to continue as I am up to my 90s, Lord willing I’m around that long!”

Talk With Others Who Understand

MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 161,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Are you living with questions about aging and MS? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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