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    • #16746
      Jodi Enders
      Keymaster

      Myasthenia gravis is an invisible illness because people cannot see the disease physically except for the possible eye droop and walking difficulty.

      Have you encountered faces of disapproval when you use disabled parking spots, disabled bathroom stalls, or a wheelchair then get up and walk fine?

    • #16765
      Mark
      Participant

      Hello
      I never park in handicap posted spots. I’ll walk. I do this because it does build up those muscles that tend to weaken. There are many people much worse than MG people. They need those spots much more than we do. “In many cases”..I feel sorry for those that need that spot but cannot find one available because someone has used their elderly or physically disadvantaged parents mirror hanger for their own unneeded use. It always amazes me when some healthy person pulls in and jogs into the fitness center. Guess that’s just the society we now live in. Remember when people would open and hold doors for disadvantaged people. Don’t see that much anymore. Where did respect and good old fashioned good manners go. Out to lunch I guess.

    • #16767
      Dave Hall
      Participant

      I have toyed with the idea of getting a handicap parking permit but so far, have refused. I know I need the extra exercise that I must get by not having the permit.
      Sometime ago, at my local grocery store, I watched a young college couple approach a car that was in a handicap space. They both appeared to be physically fit. As they got close I said “handicapped “. The driver looked at me with a surprised look. I pointed to the sign and said “Mental?” There was no response so I went about my business.

    • #16781
      Ann Marie Hetrick
      Participant

      I did fight my husband for a long time about getting a handicap permit. I too want to walk to keep strength. We did get one for me but I really do not use it unless I am really having problems walking. It has come in handy a few times as I also have two bad knees and when they are acting up and the myasthenia combined  I have a hard time walking. I feel guilty though because when you look at me I do not look like I have anything wrong with me. They are good to have when you are not feeling your best.

    • #16784
      Ronald E. Clever
      Participant

      I have recently applied for handicapped placards. I had been using one from a friend of mine but finally realized I needed my own. Do I fell bad for doing that? No. I am 60yrs old have MG and the only other person in my household is my 70 yr old sister. So when we go to the store in this 90 degree or better heat we need to be close to the door. I also have asthma. None of my ailments are visible and we as a community should realize that when seeing others park in a handicapped space. I for one do not judge.

    • #16792
      Jana
      Participant

      When I began getting severe lower back pain on top of my MG I finally had to ask my neurologist if he would request a handicapped placard.  Most days I do need to use it.  I was actually confronted by a man in a parking lot ignorantly telling me that I wasn’t handicapped, as he had seen me walking in the store.  I was so shocked by his anger that all I could think to say was that he doesn’t live in my body and to kindly get out of my face.  I’m a very emotional person and have been questioned/not understood for 20 years by my own family, old friends and past co-workers, so I just sat there for a short time and cried out of frustration.

    • #16777
      Shannon S. Child
      Participant

      We need to remember that each person living with MG has a different journey!  I’m glad to see that you both are able to walk gingerly to wherever you need to go.  That has not been my experience.  I took me a long to come to terms with the fact that I did need a handicap placard.  It’s discouraging to feel “less than” you want to be.  It’s a constant reminder of my new normal.  However, I am no longer able to go on long walks and hikes, which I used to enjoy.  Instead, my husband and I are limited to walking around our small block, so I’m never too far from home, in case my “legs” decide they no longer want to function as they once did…so I don’t have to call an Uber to get home (which may only be 1/2 mile away, but may take me over an hour due to the frequent breaks I require to make it home).  I want to be able to enjoy open air markets, street fairs, and sporting events, and my son’s recent high school graduation without the anxiety that comes from knowing I may not be able to make it back to my car without my husband having to support me in a way that makes others look at me like I’ve had too much to drink.  Having a handicap placard is not a “reward” or something I took lightly.  I went through a grieving process realizing that I am no longer who I once was, that this is my new reality.  My doctor encouraged me to get a walker (mostly for balance and to be able to sit down when I need too).  I’m still reluctant to admit I need that much help.  I’m a teacher, on my feet a lot.  Instead, I carry a lightweight stool when I leave my classroom. My students ask me if all the teachers need to sit down to watch their kids on the playground or to wait for them outside the special area classroom (I worry the perception is that I’m lazy, but it is what I need to do to make it through the day).  I am thankful I can still teach.  I’m grateful for each day, even at the end of the day, when I walk with complete and total exhaustion to the handicap spot where I parked, that allows me to go to work at a job I LOVE.  Even when I have to call my husband from the driveway at home to help me out of the car and into the house because my legs no longer will support my body.  Even when at home, I can only go up the stairs of our two-story home at the end of the evening when it’s time to go to bed.  Asking for help, needing help, accepting help, is not a sign of weakness.  I am thankful that I have a little extra help to live a “normal” life.  But I’d give almost anything not to NEED it!  And I’m positive, if given the opportunity, nobody would willingly changes places with me (or others with similar MG experiences) to have a handicap placard!

    • #16811
      David Seibert
      Participant

      I have a handicapped placard and use it.

      It is hot down here in Houston, especially in a parking lot on a sunny, humid day.

      The placard allows me to get from the truck to the store, with some energy left to walk through the store and shop.  Before I had the placard and we parked out in the lot, quite often I would be so fatigued by the time I got to the store that I could not make it through the store.

      So I do use mine and am grateful that I have it, otherwise, I would not venture out as much.

      Scott

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