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Growing Older with Multiple Sclerosis

If you’re at least 55, you’ve already lived through a minimum of two life stages with the disease: Youth, menopause, and that long phase called middle-age in which you still might dwell. If you’ve experienced all three and you’re mostly stable, then you’ve been both lucky and resilient, a real trooper. You’ve made it to middle-age relatively unscathed. You have both life experience and disease experience, and you probably take both in stride more now than ever before. But what about the future?  What about the golden years and MS?

The bad news is that there’s an unfortunate dearth of studies on the subject of aging and MS–perhaps because it is still considered a young person’s disease, perhaps because there is the perception of a more urgent need for studies and drug trials affecting the 20 to 40-something cohort that could ease the particular burdens and stresses of employment and child-rearing that preoccupy that majority age group. The younger you are, the more promising your future, as new ground-breaking treatments that will halt the disease and restore function may become available to you long before you fall into the category of “geriatric.”


But suppose you are borderline geriatric—or firmly planted in it. The symptoms of aging and of MS can be very similar, generating a great deal of uncertainty. Many of we older folk have stopped worrying over what is causing what and focus instead on how to treat the symptom. Getting clear on what is most important and then putting one’s focus on that is not only a product of wisdom and experience, it is also a necessity. Who over the age of 50 has the energy or desire to sustain a high note of anxiety? That’s not just about having MS. In fact, older adults in the non-MS general population tend to have a better handle on what is most important for quality of life, too. Multiple sclerosis or no, we all hit 50 and grow weary of expending energy on living up to others’ expectations, conforming, and generally engaging in petty nonsense. As we will see in the study on aging with MS examined below, there are actually some benefits to being older with MS compared to the younger MS cohort. It bears mentioning that those surpluses mirror study results on aging in the general population.

Older people with MS have reported that they have quality of life, mental health, and general good health that qualitative studies have found to be equal to or better than those of younger MS patients–this despite being more physically disabled than their younger counterparts. They have acquired strategies and resources that enable them to be happier with the simple things in life, and therefore better adapted to managing the challenges of living on a lower income. Without the pressures of work and child-rearing, their days in general are less stressful.

But older MS patients also face issues unique to their stage of life. They require more home care than younger patients, which is mostly handled by spouses and family members. In some cases, the patient herself is caregiver to a disabled spouse. Home care is often too expensive to utilize, putting more strain on everyone concerned. An older MS patient has slightly different needs than their frail elderly counterparts. Services like respite care and adult day care are mostly populated by the elderly who have significant cognitive issues. Older MS patients generally have more mobility issues.

What’s more, people with MS who are deemed “young-old” and who occupy nursing homes are generally younger, more alert, more depressed, and have longer lengths of stay than the typical nursing home patient without MS. Staff are not usually trained to meet the needs of the MS patient, which might involve more interaction with younger patients and stimulating activities.

Health professionals should help their older MS patients address end-of-life issues and advance directives. The professional will better serve the patient by enlisting an integrative group of health care providers to help the patient navigate these complex decisions.

Though many of older MS patients’ needs are the same as younger patients, resources available to both don’t adequately address the differences. Support groups, marketing campaigns and doctor care are mostly geared toward the young.  A 2012 census report projected that by 2050, people over the age of 65 will make up 20 percent of the US population, which will swell from the present 314,000,000 to an estimated 400,000,000. Senior citizens presently make up 13 percent of the population.

As the general population gets older, the need for doctors who specialize in the field of gerontology is growing. For the sake of MS patients who live a normal life span, let’s hope that future neurologists will have gerontology as a subspecialty—as well as gerontologists who are educated about neurological diseases.1,2

The above material is just a small part of a longer, more comprehensive article on aging and MS. I strongly recommend that you read the complete article listed in the reference section below.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. DiLorenzo T. Aging with Multiple Sclerosis. A Clinical Bulletin from the Professional Resource Center of the National MS. Published 2011.
  2. Ortman JM, Velkoff VA, & Hoga H. An Aging Nation: The Older Population in the United States Population Estimates and Projections Current Population Reports. U.S. Census Bureau. Published May 2014.

Comments

  • qw3e60
    4 years ago

    Good article, but the title is misleading. It should have read Women Growing Older with Multiple Sclerosis. Even though statistically women are affected more often than men, MS does not exclusively affect women.

    David — 15 years living with MS

  • Kelly McNamara moderator
    4 years ago

    Hi David. Thanks for the comment and feedback. You’re very right. Men may have varying experiences growing older with MS. Thanks for being a part of our community! – Kelly, Community Manager

  • Nancy Korotka
    4 years ago

    I just turned 68 last month but surely don’t consider myself elderly yet! My body says I am, but not my mind :). I’ve been on Avonex, Rebif, and now Betaseron since diagnosis in 2003. I had MS before that but didn’t recognize it until I saw a specialist. It’s not fun aging along with this disease because sometimes you don’t know if the weakness and fatigue is part of the aging process too. I doubt it though because I was always physically active and healthy before I got robbed from MS. I want to try Lemtrada now to see if I can get away from all these shots and other meds i’m on. My Betaseron is not working as well as it should anymore because I am having relapses more often again. I do not want to try any of the oral meds – I take enough pills to choke a horse now! 🙂 Another thing about being this age is I can’t get on any trials because the cut-off age is usually 55. That’s not fair to us older ones – don’t you think?

  • Kathleen
    4 years ago

    I was very happy to see this piece. I’m one month from age 68 and “getting older” has been very much on my mind lately. I was formally diagnosed in 1996, though like many of us I had sporadic MS symptoms for 15 years prior to diagnosis. I do feel well adapted to living my daily life right now, but can’t get clear about what my next living arrangement would best look like — some type of group living, assisted living, in-home services I really can’t afford, or ? I’m thinking about either finding or starting a local support group for aging adults with MS who might want to toss some ideas around. I also welcome others sharing relevant ideas, concerns, & suggestions right here about planning for the MS & aging transition we’re finding ourselves in.

  • Hel46ene
    4 years ago

    I have had MS for 28 years. I have been on Betaseron, Avonex & Rebif. I am glad to see some one addressing this problem.

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