GtrJim

My wife was diagnosed in 2017. She has been taking Riluzole since then, first as a clinical trial participant, and then on a regular basis. Her progression has been slow so we assume that the Riluzole is effective, and there have been no side effects.

See my post on the Tobii Dynavox eye gaze device. My wife uses the I-13 model. This was an upgrade from the I-10, which was covered by Medicare with her doctor’s order. We had to pay for the upgrade ($15,000). The Tobii is not perfect, but I would rate it a 7 out of 10 and the tech support is pretty good.

My wife was diagnosed with ALS in 2017. The ALS is slow progressing but she has lost speech and use of arms and legs. She uses the I-13 Tobii Dynavox eye gaze device, typing on the screen with her left foot, which still has some motion, rather than use the eye gaze feature, which she has found to be difficult to get used to. I have encouraged…[Read more]

My wife was diagnosed with ALS three years ago.  She has been unable to speak or swallow for about two years.  We have a Tobii Dynavox eye gaze device.  If the device is calibrated well with her eyes, she can gaze at a keyboard and create words and sentences and the device can verbalize those.  She can receive and send email.  The DirecTV and Appl…[Read more]

My wife was diagnosed with ALS three years ago.  She had been going to Barrow Neurological Clinic in Phoenix but switched to Hospice home care about a year ago.  When at Barrow, she participated in a clinical trial for Riluzole, taking 1-2 trial pills a day, dissolved in her mouth.  She takes all other medications and formula via feeding tu…[Read more]

My wife was diagnosed with ALS in 2017.  Early on, she lost her voice and the muscles surrounding her mouth, and she could not swallow, so we needed to go to a PEG feeding tube.  All her meds are crushed and we use a syringe into the feeding tube.  Her formula is IsoSource 1.5, (250 mL per carton) fed by gravity feed bags connecting to the fe…[Read more]