Jennifer Lewis

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…

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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…[Read more]

Thanks for the info! Have you noticed improvement since starting the injections?

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).

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.

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!

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.