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Thread: Keep on Moving Club: November 2018

  1. #41
    Distinguished Community Member Sunshine's Avatar
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    Aw Tweeker. It’s good to see you again. But I am so sorry about the loss of functioning. This MS is a constant battle of readjusting for sure. I doubt there is anyone here that hasn’t had bouts of just feeling like giving up.

    Stay a while and share your experience. We all carry each other on our shoulders. There is still meaning to your life. For me, I find meaning here supporting others and reaching out as best as I can.

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  3. #42
    Distinguished Community Member agate's Avatar
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    Tweeker, I can only echo what Sunshine said.

    I wonder why MRIs are done if a person has already been diagnosed and isn't on one of the MS drugs and probably won't be going on one of them. I can see why doctors want to do them if there's an uncertain diagnosis or if there's a question about what drug might work best. Too bad you had to get bad news from the neuro.

    MRIs often show lots of disease activity when the person isn't feeling worse, though, if that's any comfort. I try not to think too much about MRIs. I'm not sure that the experts even know how to interpret them very well.

    Those classifications of MS are kind of loose, too. They don't really know for sure if a person is SPMS, RRMS, PPMS or what. They didn't have those classifications when I was diagnosed, and even now that they have them, they keep rethinking them. I wouldn't worry too much about being classified as SPMS. MS may even be more than one disease. They just don't know. They're working on it.

    Ghastly disease.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #43
    Distinguished Community Member Sunshine's Avatar
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    Today I swam at home as the pool rose to 77F as was the sunny air. 30 minutes, 1/2 mile. Will pack more today. Mover just came to work up estimate to move a week from Saturday. It’s getting closer. The house passed inspection yesterday. Unsure if the pool will be done by moving day. That’s ok. Will be busy setting up te house anyway!

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  7. #44
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    Tweeker, Sunshine said it best. We are caring group here and try to support one another in whatever they are facing. If you really were unsure that you had disease progression until the Doctor told you then I don't think I would worry too much. I have days that are worse than others and I have noticed that most everyone on here does. Those are the times that we try to lift each other up. Do not give up hope. Many people who have never been on a disease modifying drug are still doing well, even into their later years. You could be one of these people.

    Sunshine, great going today. You are getting close!
    Virginia

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  9. #45
    Distinguished Community Member Jeanie Z's Avatar
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    :) Hi Tweeker, glad to see you posting again. MS does suck but some days are better than others. This board is a big help to me with coping with MS. Come back often. Jeanie :)

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  11. #46
    Distinguished Community Member Howie's Avatar
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    Tweeker, in 20 years, I've had 2 MRIs. One gave me a DX, and the second was to get a Hoveround chair which I've never used. I take none of the MS meds, yet I still walk, and still drive, but do little of both. Please join in often, this is a great group.
    Evolution spans the Universe.

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  13. #47
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    Well, I have done some cleaning today. I still have to vacuum tomorrow.

    After finding a few days ago that I could not get up off the floor in my usual Yoga pose, which I had been doing for many years, I then found that later when I tried again I was able to do it. I think I should try to do it more often rather than pushing up with my arms so that I will not loose that ability to come up on my legs. I also need to try and remember to take bigger steps as I walk down my hall. I use to lengthen my stride by walking up and down my hall. It is small, but still doable. I will try to remember to do that again on a frequent basis.
    Virginia

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  15. #48
    Distinguished Community Member Sunshine's Avatar
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    Those are good revelations Virginia,

    I swam at house, 77.5 F pool, 80 air, sunny, in neoprene., 1/2 mile, 30 minute.
    This move highlights how very impaired I am on land. DH reminds me, “You don’t have to pack. Your job is to take care of yourself.”

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  17. #49
    Distinguished Community Member agate's Avatar
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    Sunshine, I hope your DH keeps on saying that!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  19. #50
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    Today I went up and down stairs bringing laundry to and from the second floor to the cellar. I had to go to the cellar 3 times to get 2 loads done. I also loaded and ran the dishwasher. That’s enough for today.

    ANN
    There comes a time when silence is betrayal.- MLK

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