I pride myself on coining my own phrases. But they never caught on. So, I am not too proud to overuse an overused phrase. And when it comes to getting old, legendary vaudeville entertainer and actress Mae West got it right: “Getting old isn’t for the faint of heart.”

We are all aging. As we do our bodies go through documentable, clear changes. We know how skin thins and bones weaken. And how grey hairs make an expected appearance at times and act as an unwanted guest at other times. 

No one escapes the bonds of growing old. Commiserating about old age is as old as age itself. Philosophers and comics alike have waxed poetic on the topic. However, growing old with multiple sclerosis (MS) comes with its own complications. A disease on top of the normal aging process adds another layer of difficulty. 

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I expected that there would be a great deal of research on how to live with MS as an older person. After all, there should be a large enough research base of people who have been diagnosed over the decades. This assumption has not been borne out. Curiosity over the way this chronic illness changes over the course of a lifetime was not on a top 10 list. The emphasis on finding a cure led researchers to focus on that and not what was experienced by people living with MS. 

Older people with MS did not count as much as younger patients who had a chance of being cured. This belief was further proved by my own neurologist, who is known for research into the overall causes of MS and children living with the disease. 

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For the most part, this group of MS experts famously tells patients over 55 years old that disease-modifying therapy (DMT) should cease since research shows that the medications are likely ineffective. This is said regardless of the fact that researchers arbitrarily chose 55 years of age as the cutoff for research participation resulting in a lack of research. There is no consideration for individuality. There is only a feeling that older people don’t count. If they have lived this long, they are OK. 

As I head toward the MS age cliff, I feel the dismissal of older patients all the more clearly. I hear the drumbeat of DMT denial. That is the sound of being kicked off the medicine that has kept MS progression at bay. I have my studies ready to prove that we do not know enough to decide that DMTs do not work after age 55. 

I am staking my claim and standing up for myself, and others, as an older person living with MS. Our concerns do not dissipate over the years. We do not get comfy with MS and take it for granted. It is as present now as it was on diagnosis day. We are as valuable as our younger counterparts. 

Research on aging with MS has gained momentum and I have seen many more efforts to address these deficiencies. I welcome this growing focus and urge all healthcare providers dealing with MS to not dismiss older patients.