Why I’ve been pondering life expectancy and multiple sclerosis
Life expectancy in people with MS has improved over the last 50 years
My husband and I are both considering early retirement. We’d discussed it for the past five years but hadn’t made any firm decisions. Last month, we decided that we needed to get serious about planning for it.
We met with a financial adviser for retirement planning advice at our investment firm. The meeting lasted about an hour. Lots of questions were asked of us and lots of numbers were discussed. One point of discussion caught me off guard: You must estimate your life expectancy when calculating how much money you’ll need to live on during retirement. This seems like a fundamental concept for retirement planning, so I’m not sure why I wasn’t prepared to answer it.
I guess I hadn’t ever put a lot of thought into when I’m going to die. In hindsight, I know I’m fortunate not to have been in a situation where early death was a possible outcome.
My answer to the financial adviser’s question was, “I am going to live to be 95 years old.” I based my answer on the following information: 1) Both of my parents are still alive. They are 83 and 86 years old. 2) My paternal grandparents both lived until their mid-90s. 3) In general, healthcare advancements are extending life expectancy. 4) I take good care of myself by practicing preventive healthcare, such as getting the flu vaccine, colonoscopies, mammograms, etc.
The financial adviser didn’t question my response and used this age in all of his calculations. The meeting progressed with … more questions and more numbers.
Later in the day, after the meeting had concluded, I was still ruminating on that question about my life expectancy. I started to worry that I had grossly overestimated it, because I hadn’t taken into consideration my multiple sclerosis (MS).
My next thought was, “Do I really want to know if MS decreases life expectancy?” For me, though, not knowing was worse than knowing the answer. I feel better after researching the matter and want to share with you what I learned.
Life expectancy in people with MS has improved over the last 40 to 50 years. Several reputable healthcare websites consistently refer to one particular study when addressing current life expectancy in MS. According to this study, published in the journal Neurology in 2015, life expectancy in people with MS is approximately seven years less than those without MS.
The study estimated annual mortality rates for 5,797 individuals with MS compared with 28,807 controls with a similar age, sex, and geographic location. People with MS lived approximately 76 years compared with 83 years for the matched general population.
I hope this life expectancy gap continues to shrink. I think better recognition of MS and early diagnosis and treatment may help to improve it. Additionally, advancements in future treatments may also help us live longer.
So, yes, I did overestimate my life expectancy. But, honestly, I also overestimated it if I didn’t have MS. I just wasn’t prepared to answer the question. Knowing that I have a lower life expectancy due to my MS gives me motivation to follow healthy practices like eating healthy food, exercising, and taking my medication every day.
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About the Author
Ian R
I took medical retirement in my early 50s after working just over 30 years. The commute (walk, train, walk) was getting too much. The factors I considered when applying for medical retirement were:
- on average MS reduces life expectancy by some 7-10 years
- it’s quality not quantity (increasing disability means that your final final years with MS will probably be poor quality eg mobility issues)
- my aunt died of MS in her early 50s in the 1990s.
I’ve been medically retired for some 8 years and don’t regret it. MS does seem to be progressing, but slowly. I can still take the dog for walks (not long walks). It’s a slower pace of life without the stress of commuting / work.
I’m 60 next month - my parents are 85 and 88 this year. Annoying that I can’t help them more because of MS eg emptying their loft…
I’m hoping that we’ll see some treatments which really impact the underlying progression. The current treatments are great at stopping relapses, but there’s more to do to slow / stop the underlying neuro-degeneration and more to do in terms of repair eg remyelination.
Best wishes.
Michele Chadwick
I totally agree. I have been on disability for a couple of years now and it was absolutely the right decision. I am 55 and am hoping that something will come out to help us regain some of the things MS has taken from us but I will at least continue on my meds and try to exercise to try to help stop the progression. Most of my family has lived into their 90’s too but I’m not so sure I will make that.
Ian Rogers
Michelle,
Many of my family made it into their early 90s - some of them heavy smokers. Slightly galling as I never smoked and looked after my fitness. Cycling (static bike and road bike) keep my legs strong, but still annoying that I have to wear a knee support and hiking pole to go for a walk. I’m keeping my eye on BTK inhibitors as they are being trialled in progressive MS. There’s a few remyelination trials - one in Cambridge (England) should report this year. After 21 years with MS, neurology hasn’t impressed me much. You’re pretty much left to get on with things so have to do what you can eg healthy lifestyle.
Best wishes
Chrystelle MERI
Thank you Leigh Anne for this informative and very well written article.
KR
Chrystelle
Author KLS FUERTE
Tom Liberatore
I am not so optimistic, although my parents both lived to be 96, after 20 years of MS with the last 5 being secondary progressive, at 75 I'm feeling pretty mortal. My last two falls have taken a toll, ambulance rides, ER visits, and concussions that have lingering effects, I'll be lucky to make it into my 80’s but I'm not counting on it.
Anthony Hoysted
I've had a look at that 2015 study and some others to try to discover exactly why people with MS have had shorter lifespans, but can't seem to get any definite reasons. Perhaps in the past people with disability simply had poorer quality of life, less income, and less access to healthcare the more abled population, which affected their life outcomes. Hopefully those are diminishing factors today.
Ian Rogers
Infections play a key part. Late stage MS can involve swallowing and breathing issues. Pneumonia seems to be the main reason for death at this stage.
All we can do is lead as healthy a lifestyle as possible - stop smoking, exercise as much as you can, keep the weight off, getting treatment for infections ASAP, treating any other conditions you have, possible getting on MS drug trials (if there are no current MS drugs available)….
Bram
Thank you for this thoughtful piece about confronting the life expectancy question during retirement planning. I wanted to share some perspective that might be reassuring: the 7-year difference you found in research is actually an average across all people with MS, including those with very severe cases that significantly impact the overall statistics.
Given that you've already lived with MS for about 10 years while maintaining an active career as a professor, your personal outlook may be more favorable than these general statistics suggest. The fact that you're able to plan for a long-term retirement, maintain preventive healthcare practices, and stay active are all positive indicators. Research shows that people who maintain good function and mobility over their first decade with MS often have better long-term outcomes.
Your approach of using this knowledge as motivation for healthy practices rather than a source of worry is inspiring. As you noted, with continuing advances in treatment and early diagnosis, outcomes keep improving. Thank you for opening up this important discussion - it's valuable for the whole MS community.
JOYCE CERVENKA
JUST TURNED 82, HAD MS FOR 34 YEARS, SO I HAVE BEATEN THE ODDS AND SO WILL YOU!
Graham Hatt
Thanks for your article.
I am 64 and have MS.
Letici
Me encanta tu última reflexión. Es mi motivación diaria para lidiar con esto.
Gracias !
Betty Beem
I am 83 and will be 84 soon. I think there are several variables that also need to be included. One doesn’t necessarily know the exact course MS will take. One has to consider that comorbidities will occur and how they impact the other physical issues is difficult to predict. One also has to consider the quality of life he/she will tolerate.