MS is one of those diseases that might bring with it a range of disabilities, but what about death and MS? Do people die from it? Does it impact lifespan, and how much of a big deal is depression?
Someone with a mild form of MS may live a long and relatively healthy life, and they’ll likely die from normal issues associated with aging such as heart disease or stroke. The average lifespan of someone in the US with MS is 76 years instead of 83 for the general population.
However, someone who’s disabled and immobile from it, especially someone diagnosed before the age of 30, may die from “complications caused from MS,” (rather than from MS itself). These are mostly infections like chronic UTIs or pneumonia, which generally occur 25 to 35 years after diagnosis. There are, of course, exceptions to these figures and people may experience symptoms sooner or live much longer.
A perhaps lesser known factor is MS and depression which can lead to suicide. It is believed that fifty percent of people with MS will experience serious depression at some stage living with MS. This is due to changes in the physical body including cognition, and changes in the brain chemistry making the person more prone to depression. Psychosocial challenges that impact function and quality of life such as increased isolation and reduced independence also play a part. Numbers vary, but sources range saying suicide is between twice and 7.5 times as common for people with MS. Some studies show that suicidal tendencies occur mostly within the first few years after diagnosis, or after a major event in the disease process such as loss of mobility.
I’ve spent a fair bit of time thinking about death this last year. In August and September, 2021, I was a patient in a Spinal Rehabilitation Unit for three weeks at a major hospital in Minneapolis. I’d undergone surgery to have a pump the size of a hockey puck inserted into the right side of my stomach. The pump links a tube to my spine and administers medicine called baclofen to reduce spasticity.
My spasticity had become so severe that the only way to get me sitting in a chair or in the car was for someone to manually bend my legs at the knees which required using massive force against my tense muscles. Likewise, to get me back to standing required someone putting their arms around me and standing me up before getting me back into my wheelchair. The spasticity had also traveled up to my chest. My abs and back were rock hard, not due to working out, but due to constantly contracted muscles. I couldn’t bend forward, and my back muscles wanted to pull me down and straighten me out like a log. I required a high-backed wheelchair to keep me upright. Not only was this a challenging way to live but it was exhausting and painful. The pain ranged from excruciating charley horse spasms in my back to an incessant heavy tug in my legs, the sort you feel when you’re actively over exerting your muscles.
I tried taking the oral version of the medicine I’d go onto have in the pump, but it had no effect. I also tried muscle relaxants, but they got me high and put me to sleep, so those weren’t a forever option either. The only time my muscles relaxed and the pain dissipated was when I was in deep sleep. I’d awaken in the middle of the night, notice my legs were relaxed, but that instant, the veil was lifted and the spasticity took over once more.
I couldn’t continue living like this, but there was no way of telling the amount of muscle strength or neurological connectivity, if any, I’d have in my legs once the spasticity was reduced. The hope was I’d be able to walk or do physical therapy to regain strength, but unfortunately this wasn’t the case.
Eliminating the spasticity revealed that other than wiggle the toes of my left foot, I had lost the ability to move or feel my legs at all. The good news, if you can call it that, is the pump works so I’m no longer as stiff as a board, although I still have a lot more spasticity than a ‘normal’ body.
At 48, 20 years after diagnosis, I added paraplegic to the list of offerings MS has presented me - fatigue, heat sensitivity, head and stomach aches, muscle weakness, numbness, neuropathy, vision trouble, cognition issues, bowel and bladder problems and more. I know I’m lucky to be alive, but there are times I wonder how lucky I really am.
On the Expanded Disability Status Scale, a tool neurologists use to categorize disability in MS, I’m at an 8 out of 10. It’s a hard pill to swallow, but I’m hanging in there. My time is filled with FaceTimes, reading, writing, collaging, and lots of napping. I also attend online wheelchair yoga classes, and tutor a few students on Zoom which I love.
I’m fortunate to have the University of Minnesota Multiple Sclerosis Center on my doorstep. They not only take care of my physical health, but also look after my mental health. I meet with a health psychologist weekly for online therapy. She works with people with incurable diseases or in the dying process. I’ve also found an online home with an adaptive yoga studio, Mind Body Solutions. Founder, yogi, Matthew Sanford was paralyzed 40+ years ago in a tragic car accident. He has gone on to change the understanding of the mind body connection through his study of yoga and disability. He was taught in California by a teacher in the same lineage of the teachers I practiced with when I lived there, so being with him feels familiar and his community is welcoming.
My request of you is this - please, if you know someone with MS, check in on them to see how they’re really doing. If they need help with their mental health, encourage them to seek professional help such as talking to their doctor or a therapist. Even if they seem to be doing great, they might be masking a whole lot of thoughts and feelings. There’s more to MS than meets the eye.
Further Reading
MS Tied to 75% Increased Risk of Mortality in US Study, Multiple Sclerosis News Today
Depression and Suicidality in Multiple Sclerosis: Red Flags, Management Strategies, and Ethical Considerations, National Library of Medicine
MS Society funded researcher explores rates of suicide in people with MS, MS Society, Canada
PowerPoint_Template - National Multiple Sclerosis Society, Mood and Cognition in MS
D is for Death and Depression