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How to get a seat on the bus/train with invisible MS fatigue

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    #16
    My Niece

    My sister has PPMS, struggles most of the time. Four years ago I took her and my niece, 8 years old, to Washington DC to see the sights. We parked and took the rail into the city.

    We arrived to a full car, all seats taken. My sister just grabbed a pole and I stood behind her to help with balance. My niece took in the situation, looked around the car and shouted, "My Mommy has MS! She needs to sit DOWN!"

    All but 5 or 6 elderly people stood to offer their place.

    Sometimes kids are smarter than grown ups.

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      #17
      Originally posted by Kaitar View Post
      My sister has PPMS, struggles most of the time. Four years ago I took her and my niece, 8 years old, to Washington DC to see the sights. We parked and took the rail into the city.

      We arrived to a full car, all seats taken. My sister just grabbed a pole and I stood behind her to help with balance. My niece took in the situation, looked around the car and shouted, "My Mommy has MS! She needs to sit DOWN!"

      All but 5 or 6 elderly people stood to offer their place.

      Sometimes kids are smarter than grown ups.
      This story just made my day better! Thank-you for sharing it.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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        #18
        "balance disorder"

        I've not had to use this yet, but since I look like I'm in great shape, I have thought about what I could say that would not make me burst into tears when I do need to sit. I came up with, "Excuse me, but I have a balance disorder and really need to sit down." It's not untrue, but nobody's going to dispute it, either.

        Only once has anyone said anything to me - an older woman asked if I could stand up ... for her mother. I apologized and said I had a balance disorder, so I couldn't. On really bad days, I imagine myself having the guts to suggest someone ask an able-bodied person. I've also thought about using that phrase to ask for a seat: "Excuse me, but is there someone able-bodied who could let me sit down?" There's a tiny bit of shaming the actually fit people that goes on with that, but when I really need a seat, I can get pretty indignant.

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          #19
          I'm late to this thread, and I've never thought about it. (I take my car to work.)

          I think I would ask if someone would let me sit in the handi seats. But I would definitely preface it with, "If anyone in a handi seat is not handicapped, would it be ok if I use the seat. I have MS, and it's very hard to stand on a moving vehicle." Maybe someone in a regular seat will offer.

          Just putting myself in the already seated person's place. We wouldn't appear handicapped to anyone else.

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            #20
            I've often thought of putting my placard on a string around my neck...
            Seattle, WA
            Dx 05/14/10, age 55, RRMS, Now PPMS
            Avonex 5/10-9/11; Copaxone 20, 9/11-4/13; Tecfidera 4/13-7/15; Copaxone 40, 9/15 -present

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              #21
              Yup. What misslux says. I use a cane only very occasionally, if I am in an MS flare that affects my mobility. But, I have found it useful to not feel weird to request airport assistance. I don't need the assistance for the mobility, but, the stress of flying by myself and finding gates makes the assistance worth getting over my feelings about carrying a cane.

              My cane is also collapsible and I can keep it in my purse when not using it. My cane's name is Ingrid. She is strong; she is female. And, she is there when I need her.

              ~ Faith

              Originally posted by misslux View Post
              I know you probably don't want to bring one (trust me, I've been there), but have a (collapsible) cane with you at all times if you have debilitating fatigue. That way you can whip it out when needed and also get a seat without question.

              Your safety is extremely important so please use an assistive device to prevent yourself from toppling over.
              ~ 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.

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