Rememorables, n., pl. (sing. rememorable) - 1. something worth remembering. 2. Note-worthy tips or information. 3. The title of this and succeeding posts about such items
This month's support group meeting focused on "Communication Devices," which featured Kevin Forde-Nihipali's presentation of the Tobii machine as an example of high tech devices using eye-gaze technology, something valuable in advanced stages of ALS. During the discussion, I found myself taking down notes (I call them "rememorables."). These are some of them:
1. Medicare pays for communication devices, except if the patient is in a hospital or nursing home.
2. If you have a diagnosis of ALS, you are approved for Medicare within 6 months of applying, when not gainfully employed. Even if you are not yet 65!
3. Voice-banking: a truly important, forward-looking, symptom-management activity, recommended to be done as early in the disease process as possible. It involves recording your voice uttering sentences, in laughter, making coos, chuckles, and other pleasant (...or not) vocal sounds. It is important so your children and grandchildren will know how you sound like when you have a voice. You can also say your favorite phrases and sentiments (for example, "I love you.") in your own voice. How cool is that?
4. Results of experiments done to rehabilitate disabled veterans, such as mobility devices, have been used to design machines for the civilian disabled population.
Would you like to share your notes from the last meeting?
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