GtrJim
Forum Replies Created
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Not necessary to administer one med at a time. My wife was diagnosed five years ago and has used a feeding tube since then. All meds are crushed or liquid. Morning feeding is 4 meds, afternoon feeding is 3 meds/vitamins, evening is 4 meds/vitamins and bedtime is 4 meds. All feedings include 60cc water before and after. She also gets formula for nutrition through the feeding tube, administered by gravity feed.
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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.
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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 her to practice the eye gaze because eventually she will lose use of her left foot. The Tobii is her main form of communication and she uses it with her left foot throughout the day. She uses the Tobii for messages, email, text messaging, Direct TV and Apple TV (remote devices programmed in).
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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 Apple TV remotes are programmed into the device. It is her main form of communication. Usually it works OK but occasionally doesn’t and she gets frustrated. We have been on tech support with Tobii and the technicians are very good.
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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 tube. She continues to take the trial pill daily. Her ALS progression is very slow and we think that the Riluzole is helping.
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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 feeding tube. She has had to change her PEG feeding tubes twice due to issues with connecting to the gravity feed bags. Unlike syringes, which go quickly in and out of the feeding tube, a slow drip from the gravity feed bag is required with her formula to prevent stomach issues and therefore a tight connection is necessary. So it took a while to find the right connection between her PEG feeding tube and the gravity feed bags.
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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.