MS and ageing

George Bernard Shaw once said, “You don’t stop laughing when you grow old, you grow old when you stop laughing”. As I reach an age even I didn’t expect to reach, I am often reminded of Bernard Shaw’s words.

I was diagnosed after 6 months of trigeminal neuralgia, and other Multiple Sclerosis (MS) symptoms, at the age of 31. Seventeen years later, I can say my experience with MS has become the building blocks of a life well lived. But, like many, I can’t necessarily say growing old is something I look forward to, as I love life too much! The good thing is that, as I’ve grown older, clinical research continues to find solutions and develop new treatments and futuristic technologies, so I am more than hopeful that my MS at old age will not be as scary a tale as it was when I was first diagnosed.

I am now 48, blessed with the absence of facial wrinkles, and have acquired a mindset of ‘don’t you dare think of giving up.’ Because of this, my physical body doesn’t always feel 48. Sometimes it can feel 28, though other times it can feel 78. Evidently, there’s a lot of variation when it comes to experiencing MS symptoms, on top of others that come with growing older.

In 1992, statistics stated that people living with MS would have an average lifespan six to seven years less than average. Of course, since then, so many new treatments have found their way into the hands of people living with MS, they have the potential to impact prognoses in a positive way. In fact, the National Multiple Sclerosis Society (NMSS) reported in 2015 that “life expectancy has increased over time because of breakthroughs and insights in treatments, healthcare and lifestyle changes”. In fact, most people with MS are more likely to pass away from other conditions like cancer, high cholesterol, heart disease, or stroke, the same as otherwise healthy people.

According to the Multiple Sclerosis Association of America (MSAA), reasons life expectancy in MS may be shorter include: frequent relapses, late onset of symptoms (older than 40), experiencing more than two relapses within two years of diagnosis or symptoms affecting bladder control, mobility or mental functioning at onset of MS. Another is if you had initial symptoms in many areas of the body, or many lesions in brain based on an MRI scan.

To avoid all the above, and as you can already guess, lifestyle changes are vital. Walking around with 17 years of MS baggage, means there have been many dos and don’ts that made it onto my list of self-care strategies. Some worked, others didn’t. Some were fanciful, others banal. Eventually, I understood what worked for me and what didn’t, but I am not a neurologist or a neuroscientist. Whilst my personal learning has been impactful in the management of my health, my medical team has all the scientific knowledge to best support my care.

The reality is, there is the likelihood that my MS symptoms will change as I get older, something neither my neurologist, nor GP, can stop. Just like life, MS fluctuations means its unpredictable nature will remain an issue. After 17 years, however, I am strengthened with the knowledge and the wisdom not to making unhealthy decisions for my MS.

Do I think of what being 65 will be like and how my MS will have progressed? Of course, I do. I wouldn’t be human if I didn’t. A simple daily mantra keeps me going. When I wake up, I say out loud what I intend to do today. When I go to bed at night, I say aloud what MS prevented me from doing, but what I did instead. To finish, I add ‘there’s always tomorrow’. It’s an easy-to-use method that paves the way for the next day, week, or month after. Saying it aloud means it is not just a mere thought, but a live action that will register somewhere in my brain.

It always helps to remember, you don’t stop laughing when you grow old. Just make sure life is well-lived.

An important part of growing older with MS is learning how best to manage it, something Willeke has learned over the years. Find out more about how to live well with MS.

References

Life expectancy in patients attending multiple sclerosis clinics, PubMed

Study Shows Life Expectancy for People with MS Increasing Over Time, But Still Lower Than the General Population – Treating other medical conditions may increase lifespan, National Multiple Sclerosis Society

Who Gets Multiple Sclerosis, Multiple Sclerosis Association of America

How multiple sclerosis can affect life expectancy, VeryWell Health

How Multiple Sclerosis Is Treated, VeryWell Health

Understanding the Expanded Disability Status Scale (EDSS), VeryWell Health

Life expectancy, MS Trust