jennifer-lewis
Forum Replies Created
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It would be nice to have, but daggone… that’s entirely too expensive. When we travel we do a number of things, depending on the circumstances.
- We always get a room with a roll-in shower (if one isn’t available we will do bed baths and go to a hair salon to wash my hair)
- If the room we are in has a balcony with outdoor furniture, we put a towel on it and use that
- If there isn’t any furniture we just roll me into the shower with me hanging in the sling
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I watched this the other night and it was pretty good. It did have some slow spots, but I feel everyone should see it. Almost everyone they profiled had upper body strength and had become disabled later in life (which I think would be harder), which is unfortunate. Oh, and it’s available on Amazon Prime for $12.99 as well as iTunes (I assume).
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Hi Kelly,
No, I was diagnosed when I was 2 and I’m 51 now. I was just looking up about anything new that I hadn’t heard before, including possible treatments. I read on another thread that your husband is from Cincinnati. What part of town? I live in Milford. Thanks for the add!
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I definitely don’t have a problem with not gaining weight. In fact, I’m the opposite. It is SO difficult to not be overweight for me since I don’t walk, although I admittedly have stopped trying.
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My sister never walked either. I’m not sure if she could sit up unassisted or not. Unfortunately, she got a double whammy. When she was 5ish she contracted encephalitis which caused permanent paralysis on her left side and learning deficits (she was left-handed and had an IQ of 180 prior). She had a very difficult life, physically. Luckily, my parents were superheroes. Dad was the calm one and Mom was the fighter. Back in the day, schools kept telling her that they couldn’t teach us. Mom fought tooth and nail until they DID teach us. Anyway, stay positive. Your daughter has picked a great period to be alive, relatively speaking.
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Thanks for the info! Have you noticed improvement since starting the injections?
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So, it is possible to get Spiranza when you’ve had a spinal fusion? I thought the bone around the spine after a fusion would make it impossible to get it.