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Fortunate

I am so fortunate! My disease, ALS, is a moving target of symptoms. One day, I can tolerate being flat on my back for a few minutes. The next, it feels like my throat structure is collapsing under gravity. The reason I'm so fortunate is that I have very skilled, very compassionate caregivers. As long as I can communicate my needs and the reason for my explicit demands, they are pleased to lend assistance.

Thank goodness I got my Tobii I-series speech device when I did. Just under the wire, you could say. December 2013, the next month the government would stop paying for the devices, a ghastly budget cutting manuver, taking away the voice of people who need it most. While our disease takes Away our muscle function, it leaves us with complete sensation and full cognition. Imagine not being to tell someone what is wrong and how to help you. Hell on Earth.
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