Recent content by Familydad

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    Tracheostomy-pro and con

    Nikki, As you know the progression of ALS is so different for every PALS. I have watched Tracey's Bulbar Onset progress so horribly. At the beginning with minimal involvement, it was emotionally challenging, but brought our relationship even closer. As it wears on and she is now chair...
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    Tracheostomy-pro and con

    Thank you for all your advice: Jeff Long- I will read Santa Joe's posts Nikki J- I will read Diane's posts. I am so sorry you and your family are affected by this horrific disease. Would you consider trache/vent?- if you want to answer DanieH- The easy transition from just tracheostomy to...
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    Tracheostomy-pro and con

    My wife has always said she does not want be on a vent, but a pulmonolgist I have brought in for help at home has brought up the tracheostomy, initally without ventilator. She has a Trilogy at home which can function as a vent. We have four daughter (25 years old to 14 years old) and it has...
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    Alert device

    Afraidbutnotalone, Thank you. I looked at the "nighttime" thread. We use a wireless doorbell, but not sure how she could operate it with her head as she loses her thumb function .......Bucky
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    Tracheostomy-pro and con

    My wife has always been against her having a tracheostomy. She is 53 years old, Bulbar onset ALS diagnosed three years AFO. The Pulmonologist asked her about her wishes and she said she was no longer sure. She has lost all voice and has minimal right thumb movement along with some head/neck...
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    Alert device

    My wife has had Bulbar onset ALS for three years. Last vestige of motor function is her right thumb, head and eyes. She alerts me with wireless doorbell when needed at night and day when she needs help. With inevitable loss of thumb, what advice do you have for me to set up alert device...
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