Susiebow

My feeding tube was placed in October 2019, due to weight loss,complete lack of appetite, and fatigue from trying to eat.  At the time I was already almost totally dependent on a Trilogy ventilator, so my gastro doctor declined to attempt the placement.  Instead, my neurologist arranged for an interventional radiologist to perform the procedure.  …[Read more]

I tend to agree with Dagmar on this issue.  When the time comes, any voice I can use to communicate with will be fine with me.  However, when first given the Tobii Dynavox two years ago, I did decide to “message bank”.  I recorded hundreds of short phrases that I could use when needed, especially when I could no longer type in my responses or qu…[Read more]

Hi Giselle,

I would say my speech is more low and raspy, rather than slurring.  Everyone in my family can understand me except my husband who is hard of hearing and isn’t interested in hearing aids.  So I really have to enunciate and speak slowly for him to get what I’m saying.  Complicating speech even more is wearing a face mask most of the da…[Read more]

Greetings,

I was diagnosed August 2017 with Bulbar onset.  Had sought a diagnosis for both breathing and speaking issues.  Was immediately given a bipap, which I used faithfully at night for the first year.  It was a great help in sleeping through the night.  Year two brought a gradual decline in breathing, and by year three I was issued a tri…[Read more]