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14 CELEBRITIES LIVING WITH MS

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    #1

    14 CELEBRITIES LIVING WITH MS

    I noticed the article today while reading MSN. One of the celebrities listed was of course, Jack Osbourne.

    They gave a little write up on all the celebrities they listed and they noted on Jack's write up that 2 months after his DX he took to Twitter and said he had just hiked over 17 miles while carrying a 35 pound backpack. He ended his post with "Good living." It made me wonder what price he paid for his little hike or did he pay a price at all.

    I think if he did he should have said so. If he wants to an ambassador for MS he needs to talk about the bad also. In fact I didn't notice in any of the write ups did a celebrity have anything negative to say. Some did say what led to their DX.

    It was just thought I had. Did anyone else see it? If so what was your take on it? I was shocked to see it to be honest.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth
    Tags: None
    #2
    so tired of t ihs sort of stuff

    I haven't seen the article, but I can well imagine it. 17 miles with a 35 lb. backpack? Really! Seems like everything the public sees is one extreme or the other, either MS is no big deal, or the patient is at death's door. I'd really like it if one of these celebrities would present what is the reality is for many of us. I'm doing good if I can bear my own weight for 5 steps. 17 miles with a 35 lb. pack? get real! Where are the falls, the horrific muscle spasms, the knowledge that you could spend countless more years slowly getting worse and worse? MS needs exposure, but not the kind that makes it seem that people like me are making a big deal out of nothing.

    Comment

      #3
      PattiHNC those are my sentiments exactly. When I read OVER 17 miles with a 35lb backpack I about fell out of my chair. Let's give him the benefit of the doubt and say he actually did that but I shutter to think what he was like the following day! I lay odds he wasn't saying "Good Living" the following day. It was probably more like what in the world have I done to myself?! I agree, GET REAL!!
      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

      It's hard to beat a person that never gives up.
      Babe Ruth

      Comment

        #4
        I agree, it would be nice if these people used their celebrity 'power' to educate the world on what reality is for many of us.

        Today because I've got overheated my bladder has decided to leak - couldn't you just see one of these people telling the world that wetting oneself on a regular basis comes with MS. Yeah right.

        Comment

          #5
          He has had MS for 3 years, he did this hike 2 months after getting his DX. Big whoop.

          I was still climbing roofs running chimney installing fireplaces for 5 years after DX. Depending on how soon you get your DX and how aggressive your MS is and where your initial lesions are you might not have any major issues with MS for years. I wonder if he will still feel that he can take charge of his MS is 5-10 more years.
          Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

          Comment

            #6
            I kind of agree with all of you.

            If we're having symptoms and holding ourselves out as an ambassador, of sorts, for MS, we should be frank with the public regarding our symptoms.

            But, like TaeWarrior said, Osborne's MS was still fairly new. I can certainly say that I was functioning a lot better when my MS was in an earlier stage than I am now. If he was in good shape prior to MS, he may have been able to manage physical exertion at an early stage of MS.
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08            .
            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment

              #7
              Agree with the fact that it was 2 months after diagnosis. If he didn't have a serious relapse that led to diagnosis an he recovered quick, then he was fortunate and healthy. I give him credit for fighting the mental battle and the ups/down of diagnosis the first year, but it does paint an unrealistic portrait of MS. Some people have a tough recovery from initial relaose., if at all.

              I also hate to say this, but the celebrities most likely don't have the same financial stressors that most of us do. We worry about keeping a roof over our heads, paying for medical insurance and care, not to mention when we can no longer work or need more advanced care, how to get by. I am not minimizing, I know they have the same personal fears and sense of loss, but just that one stress factor may not be in the equation.
              Kathy
              DX 01/06, currently on Tysabri

              Comment

                #8
                Our First Lady

                I wish our First Lady would tell us about her father's MS. We hear how he went to work every day but nothing else.
                Ann Romney has shared some of her experience with MS but her financial circumstances is very different from most of us.

                Comment

                  #9
                  The one celebrity that shocks me the most is Trevor Bayne. I say that because they still let him race. I would think that would be extremely dangerous. What happens if he gets hit with sudden numbness in his legs or worse yet a case of ON?
                  Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                  It's hard to beat a person that never gives up.
                  Babe Ruth

                  Comment

                    #10
                    Originally posted by pennstater View Post
                    Agree with the fact that it was 2 months after diagnosis. If he didn't have a serious relapse that led to diagnosis an he recovered quick, then he was fortunate and healthy. I give him credit for fighting the mental battle and the ups/down of diagnosis the first year, but it does paint an unrealistic portrait of MS. Some people have a tough recovery from initial relaose., if at all.

                    I also hate to say this, but the celebrities most likely don't have the same financial stressors that most of us do. We worry about keeping a roof over our heads, paying for medical insurance and care, not to mention when we can no longer work or need more advanced care, how to get by. I am not minimizing, I know they have the same personal fears and sense of loss, but just that one stress factor may not be in the equation.
                    Yup. The financial toll of MS is ridiculous for us regular folks. It is for our family God knows! We could all be just one catastrophe away from homelessness but I do not want to dwell on that fact!

                    Good for those celebs with youth and/or money. They still have the same stinkin' disease, but I wish I had some of their dough! As for Jack Osbourne? Well, to me he is just a kid and I don't begrudge him for that. Even a sohisticate like him is allowed some naiveté...I hope he continues to live life on his own terms as long as he can.
                    Tawanda
                    ___________________________________________
                    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                    Comment

                      #11
                      Originally posted by PattiHNC View Post
                      I haven't seen the article, but I can well imagine it. 17 miles with a 35 lb. backpack? Really! Seems like everything the public sees is one extreme or the other, either MS is no big deal, or the patient is at death's door. I'd really like it if one of these celebrities would present what is the reality is for many of us. I'm doing good if I can bear my own weight for 5 steps. 17 miles with a 35 lb. pack? get real! Where are the falls, the horrific muscle spasms, the knowledge that you could spend countless more years slowly getting worse and worse? MS needs exposure, but not the kind that makes it seem that people like me are making a big deal out of nothing.
                      Well said!!!!! I wonder this all the time. Even the new commercial for tectifera. The girl is hiking and swimming no cane, no rollator, no pain everything is wonderful. If I didn't read real stories I would think I was just a big cry baby. Pain, spasms, fatigue etc.....
                      DIAGNOSED=2012
                      ISSUES LONG BEFORE
                      REBIF 1 YEAR

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