Many times over the decades that I’ve lived with multiple sclerosis (MS), I’ve heard about some distant relation or acquaintance of a friend’s friend who “died from multiple sclerosis.”
A somewhat gentler version of this phrase, one that typically comes up when someone famous with MS dies, is that they “died from complications of multiple sclerosis.”
So was the case after the recent passing of actress and MS Ambassador Teri Garr, including by Today and other news outlets. As she had lived with her diagnosis since 1999 (something she announced publicly in 2002), many of us were acquainted with our shared MS travails.
Her memoir, Speedbumps: Flooring It Through Hollywood, was one of the first I read about living with MS after my diagnosis in 2001. I had the great good fortune to meet and have a short chat with Garr a few years later.
Whenever I saw or heard interviews with her, I remembered her wry wit and pragmatic sensibility. She acknowledged that MS sometimes (often, really) got her down, but she always got back up.
While some remembrances mentioned her MS as only a footnote in the story of her life and career, some focused on it much more, including its role in her death.
A Timely Webcast About MS at the End of Life
It seems unfortunately fitting that I’d recently had a lengthy discussion with a panel of international experts on just that topic.
As part of The Unspeakable Bits webcast series for MS Ireland, I was joined by three experts to talk about MS at the end of life.
- Alessandra Solari, a professor and head of neuroepidemiology services at the Fondazione IRCCS at Istituto Neurologico Carlo Besta in Milan
- Rosalind Kalb, PhD, senior programs consultant for Can Do MS and past vice president of the Professional Resource Center at the National MS Society
- Deirdre (Dee) Hickson, a palliative nurse care manager and board member of the Irish Association of Palliative Care
It may have been the most important episode of our Unspeakable Bits series that we’ve done to date. A video playback of the program is available if you weren’t able to attend live.
MS Complications and Life Expectancy
We began with how, and by how much, MS directly affects life expectancy (quite variable, but between eight and nine years and improving). Our conversation continued on through preparedness for the end of life (MS or not), starting difficult conversations, palliative care, and directly confronted those life-limiting “MS complications.”
The most common are:
One of the most important aspects of the conversation was to recognize that the end of life is going to come for all of us, whether or not we have MS. The complications of MS are one possible way yours or mine might end, but if you look at that list, they are fairly common causes of the demise of many who do not have MS.
Conversations: Sometimes Tough but Important
Both Dr. Kalb and Nurse Dee brought some comfort to the conversation by recalling end-of-life experiences, both professional and personal, not related to MS, but due to these same complications.
It seems that the life-limiting complications of multiple sclerosis are also complications of life in general. It’s just that we might experience them more often and perhaps a little sooner than people without MS.
I’d like to think that the passing of a beautiful and talented screen star might be a way to initiate a conversation with those we should talk to about our eventual end of life.
“We’ve all got something, and we ain’t gettin’ out of here alive” is a favorite quip of mine when someone asks about my MS. Today, it seems truer than usual.
Wishing you and your family the best of health.
Cheers,
Trevis
