brokenclay.org/journal

‘I just want to be included’ — After compiling a mixed record in making the disabled feel welcome, religious institutions are reaching out — “I would caution against teaching someone how to deal with the disabled. People need to acknowledge the disabled … and deal with the person.”

Multiple Sclerosis Not as Progressive or Disabling as Once Thought — In the most comprehensive study of how multiple sclerosis (MS) symptoms change over time, researchers have found that less than half of patients studied developed worsening disability within 10 years.

Katja

1 Comment

  1. Mike Barkley

    From: “Mike Barkley”
    To:
    Subject: Change in MS-related disability in a population-based cohort – A 10-year follow-up study
    Date: Mon, 26 Jan 2004 01:56:09 -0800

    Bob Nellis 1/24/2004
    Mayo Clinic
    200 First Street S.W.
    Rochester, MN 55905;

    Re: Change in MS-related disability in a population-based cohort
    A 10-year follow-up study, Neurology 62:51-59

    Dear Mr. Nellis:

    I am one of the 136 members of the yahoo MS-Quads list, all of
    whom have disabilities at EDSS 8.0+ and are facing an agonizing, painful,
    fatal end (or are caring for victims facing a fatal end) from the progress
    of multiple sclerosis. My wife’s first symptoms we are sure of were in
    1959, with pain of unknown origin, numbness and tingling, loss of muscle
    control, and cognitive impairment. Her first symptoms *may* have been as
    a toddler in 1946 or 7 when she was diagnosed with Bell’s Palsy. It took
    Kaiser until 6/4/1998 to deliver a diagnosis of MS, long after she was
    having to use a wheelchair. These days she is bedridden, and nearly all
    her systems are slowly shutting down. Yes, it took far more than 10
    years, and during most of that time the symptoms would come and go, but
    that doesn’t make it any less deadly.

    You have taken Dr. Rodriguez’ study and re-written it as a
    widely-republished press release it under the headline “Multiple Sclerosis
    Not as Progressive or Disabling as Once Thought”,
    http://www.eurekalert.org/pub_releases/2004-01/mc-msn012204.php .
    Those of us facing the fatal end of this disease find this characterization
    of MS as offensive in the extreme. I would be grateful if you and Mayo
    would issue some sort of correction to this misleading press release
    before real damage is done to MS research funding.

    Thank you.

    –Mike Barkley, 161 N. Sheridan Ave. #1, Manteca, CA 95336 (H) 209/823-4817
    mjbarkl@inreach.comhttp://www.mjbarkl.com/sentinel.htm
    No more excuses – cure multiple sclerosis now!
    $87,000,000,000 to cure Iraq – a pittance to cure Multiple Sclerosis.

    Reply

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