Wednesday, April 02, 2008

Caregiving: Is MS fatal?

IS Multiple Sclerosis FATAL? Out of the emotional bombardment that surrounds any diagnosis, “is it fatal?” explodes with a mushroom cloud. 

20+ years ago, Patti’s neurologist answered, “Is MS fatal – NO, is MS life-threatening – YES”.

Multiple Sclerosis is rare as a cause of death on a death certificate. Falls and choking, in his opinion, were the most ‘at risk’ threats to living with MS. When accidents from falls produce fatal head or neck injuries or choking is the cause of death, then death statistics are skewed.

There can also be complications associated with severe progressed MS, including organ failure, infections, and depression.

A couple years later I was reading a story from the Detroit Free Press early in Dr. Kevorkian’s physician-assisted suicides. I was stunned to read that the majority of those turning to Dr. Kevorkian were diagnosed with Multiple Sclerosis.

That slapped me up side the head with reality. Fear of dependency and fear of a compromised future could be more powerful than I could imagine from the outside looking in.

In the two decades since diagnosis, choking has been the closest to fatal. Miraculously Patti has survived a host of MS related, life threatening incidents including, loss of consciousness during a choking episode, falling down stairs, pulling down a 36” television on her self, near accidentally overdosed on her medications, UTI’s, scooter crashes, and set our kitchen stove on fire.

I suspect all caregivers sleep with one eye opened.

In retrospect Patti’s neurologist visit was eerie. To his credit he also preached the significance of the caregiver spouse, who is often the line between fatal and life threatening.

Caregiving is about helping a person in need. Yet on the inside looking out perspective may be trapped in collapsing independence.

Medical FAQ’s can sometimes miss the point. Learning and listening retunes the noise to ‘living with’ and quality of life.

Caregivingly Yours, J Patrick Leer 


  1. multiple sclerosis certainly is life changing to all involved, patient, caregiver, family

  2.  You have a wonderful way of hitting the nail on the head.  Great entry.  BTW.  


  3. (((((((((((((((((((HUGSTOYOU)))))))))))))))Thank you for always sharing me your info on Ms.Its very intresting readinng

  4. I'm not surprised about the fear of dependency...although I don't have MS, I went through some fears that made me compromise the question if I felt my life was worthwhile living in silence....

    I've never depended on anyone and the fear of having to let go of some of that loner individuality and share myself didn't sit right with me. Enough so that I sought other options that weren't successful, thankfully or I wouldn't be here. It's not the quantity of life for some people, rather the quality that causes us to fear any disability in any form. (Hugs) Indigo


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