Tuesday, September 28, 2010

life expectancy facebook of multiple sclerosis

While Big Medicine offers statistics, in the 21st Century people can communicate a bond of feelings about a shared anxiety of living with Multiple Sclerosis, life expectancy. (from a Facebook comment stream)                 
"my neurologist team are adamant that, while life expectancy is, at the moment anyway, reduced marginally, it will not kill you"
 "at our recent rally in Canada, a list of people who died of MS was read.... You see, people die of MS all of the time, and the complications it causes to long-term health.....if they didn`t have MS …they`d still be alive." 
"are we taking into account the amount of people who have died from taking meds to treat their MS, like Tysabri and now this new drug Fingolimod" 
"suicide and euthanasia rates are exponentially higher in the MS community than in the general population" 
"I was told MS is incurable, it is not fatal" 
"MS can kill, it does happen and we know it does. And it doesn't matter what the play on words is the truth is the primary illness caused the secondary.....and therefore death." 
"you dont die of MS but of complications. Think of it like HIV...no one dies of AIDS but complications from it." 
"I've lost 6 friends to MS already, some under 50, they died because they could no longer breathe or eat, so I think the neuros saying you die from 'complications from MS'... is a point that has always irritated me with neuros." 
"my first neuro said I had Marburg MS. That is a death sentence. … Thank God that neuro was wrong in my case" 
"this is what the MS Society says about life expectancy:"  
Life expectancy is the most understandable question with any incurable diagnosis, neither statistics nor smiley faces will chase the albatross away.

Living with Multiple Sclerosis is the original “it’s complicated” status. Perhaps the touch of family and friends can help tip expectancy from apprehension to hope. Answers are in hearts whether broken, brave, or caring.


Caregivingly Yours, Patrick Leer 
web site: http://caregivinglyyours.com/
musings: patrick ponders

2 comments:

  1. Yes, MS affects life expectancy, though not just of the patient. There is the impact on the life expectancy of the caregiver. My husband's health has suffered tremendously as a result of the stresses associated with my having MS and his caregiving burden. Now, after his second heart attack, he's the one who really needs caregiving, and I can't give him the care he deserves. Please take care of yourself, Patrick.
    Judy

    ReplyDelete
  2. I second what Judy said, Patrick. Do take care of yourself.

    betty

    ReplyDelete

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