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Thread: Dave Bexfield. founder of the Active MSers Blog hits the NY Times with a great story!

  1. #1
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    Thumbs up Dave Bexfield. founder of the Active MSers Blog hits the NY Times with a great story!

    http://www.nytimes.com/2014/08/03/yo...20&tntemail0=y

    NYT: Dogged Persistence Pays Off, With Interest



    Dave Pic My five year dispute with my insurance company--the one where they refused to cover a life-saving stem cell transplant for my aggressive multiple sclerosis after all other treatments had failed--is finally resolved, and in the most dramatic fashion. My story is in today's Sunday edition of the New York Times, putting our disease on the world stage. I'm keeping all of my promises. To pay my parents back. To call attention to a revolutionary approach to our disease. And to change healthcare. One favor: please help in spreading this message. Spread it via e-mail. Spread it on Facebook. Spread it on Twitter. Spread it on your morning bagel. (Uh, wait, don't do that.)



    http://www.nytimes.com/2014/08/03/yo...20&tntemail0=y



    Think you can't change the world? Think again. I didn't give up because of your belief in me. Thanks once more for all of your immense help--I couldn't have done it without you. If you want to read more about my story, including the stuff I hid from you guys (sorry) so you wouldn't worry about me, you'll find it at ActiveMSers.org. Be active, stay fit and keep exploring!




    Dave Bexfield
    Founder, ActiveMSers
    Dave@ActiveMSers.org
    Be the person your dog thinks you are

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    Distinguished Community Member Lazarus's Avatar
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    Default Nice article

    Thanks for posting this Susan.

    Years ago it took me two years and I had lawyers working for me but I got my Walkaide paid for in full. When the payment was sent to the company which I had already paid in full two years before, it took a lot more time, letters, phone calls and hassle to get the company that sells the Walkaides to actually turn over the check to me!

    But I won,
    Last edited by Lazarus; 08-03-2014 at 07:38 AM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Default Persistence is the key

    Good job, Linda. Insurance companies count on people accepting the DECISION.

    Quote Originally Posted by Lazarus View Post
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    Thanks for posting this Susan.

    Years ago it took me two years and I had lawyers working for me but I got my Walkaide paid for in full. When the payment was sent to the company which I had already paid in full two years before, it took a lot more time, letters, phone calls and hassle to get the company that sells the Walkaides to actually turn over the check to me!

    But I won,
    Be the person your dog thinks you are

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    Distinguished Community Member agate's Avatar
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    --And they seem to make it especially difficult to ask any questions or get any assistance. I have dental insurance through United Health Care and dread dealing with them because of all of the people I end up telling the same tiresome story to as I make call after call.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Default

    Thanks Susan, a wonderful story. I wonder, though, if more of us felt a little better, and got a little less worked up (bad for MS), if we would not try to get more of what we should. I, personally, get so upset when I am dealing with insurance companies that I am afraid I will have a flare.

    A remarkable young man. Happy for him and his parents, and also the press it received for MS.
    Virginia

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Virginia View Post
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    Thanks Susan, a wonderful story. I wonder, though, if more of us felt a little better, and got a little less worked up (bad for MS), if we would not try to get more of what we should. I, personally, get so upset when I am dealing with insurance companies that I am afraid I will have a flare.

    A remarkable young man. Happy for him and his parents, and also the press it received for MS.
    You've pinpointed a real problem, I think. Often there are battles we could fight and win but we don't have the energy.

    I put off calls to that insurance company till a time when I feel up to it--meaning I have a couple of hours when I'm not likely to be interrupted and am feeling rested enough to deal with them. Sometimes this means that I wait and wait for many days or even weeks before I get around to the call.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member SalpalSally's Avatar
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    Default

    So true Agate. I used to be good at the fight for your rights thingy, but
    now, I usually just say, "What the h e l l", unless it's a lot of money, then
    I get my Brother(now d'ced) or DD to fight.
    Love, Sally


    "The best way out is always through". Robert Frost







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    Distinguished Community Member Lazarus's Avatar
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    Default This is Davs's three year update posted recently. I copied it from his site

    I just returned from my 3-year check-up in Houston. Before I detail the results of my autologous (own) stem cell transplant at year three, I want to remind folks: 1) the purpose of HALT-MS is to stop disease progression, not reverse damage, 2) my experience may not be representative of all study participants, 3) HALT-MS included two major components: stem cell transplant and immune system ablation, meaning that one aspect or both could be responsible for my gains, and 4) MS is a disease that is unpredictable, so my gains could also, in theory, just be natural remitting.

    Disease activity. Officially stable MRI once again. I have had no relapses (after having several relapses in the nine months prior to the SCT). I continue to take no MS medication. In fact, no one treated at the Texas site has restarted any MS medications and all have seen improvements.

    Walking ability. At year three, for the official test I logged over 500 meters again. My walking speed, tested over 25 feet, is about the same as it has been. While I use forearm crutches outside the home, I am using a single cane or zero aids inside. I often cook without aid and even carry baskets of laundry without walking assistance. I don't know if that is smart, however.

    Dexterity. More improvements. The "peg" test times were in the 24-second range for my left hand and 25-second range for my right, a significant change from 28 seconds and the low 30s last year. Typing is much faster.

    Cognitive. Tested with the PASAT (basically oral math), I duplicated last year's results. For background, I missed six questions at month six three at the one year mark, and only one at year two. I think I got excited toward the end once again and pooched one of the last numbers. I also have been doing the brain training games at Lumosity for the past year and rank in the 99th percentile for my age group, so missing even one makes me angry.

    Fatigue. Still zero.

    Balance. Again, this continues to surprise me. I often use no aid in the kitchen and chop/prep everything standing. Moving a pot of boiling water off the stove is not a problem. Lugging laundry to and from the bedroom is easy. I've had no falls.

    Lower Body Strength. Aces. Going to the gym is helping.

    Upper Body Strength. More aces and bigger muscles. Protein after exercising is helping in that department. My right side is still a smidge weaker than the left, but that might be from a prior shoulder injury.

    Vision. 20/20 with glasses. Pretty much unchanged since month 6.

    Bladder. About the same from last year. Urgency is a minor annoyance.

    Numbness. For two years running, I've answered correctly the "is your toe up or down" test.

    Overall. The doc said he bumped up my score again after my testing, so I bested last year's battery of tests.

    My next series of tests will be at the four year mark. Immunizations are complete and I currently I am on zero daily prescription medications, same as last year. I take Viagra for complications from my low testosterone (although things work without such aid, just not as reliably) and pop the occasional half Ambien for sleep. Vitamin D (4000 IUs) is the only supplement I take.

    So to sum up: More steady but gradual improvements. Nothing earthshattering, but noticeable nonetheless. Will my current gains hold? Will I see more gains by year 4? Fingers are always crossed.

    As always I'll post more about further gains and any speed bumps as warranted.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Default

    That is super great news Linda, thanks.
    Love, Sally


    "The best way out is always through". Robert Frost







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    Default

    He does seem to be making some progress and is very upbeat about it.

    Thanks for posting this Linda.
    Virginia

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