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Susiebow replied to the topic Tips for adjusting to living with a PEG (feeding tube) in the forum Living With ALS 1 year, 7 months ago
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]
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Susiebow replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 10 months ago
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]
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Susiebow replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 1 month ago
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]
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Susiebow replied to the topic Respiratory onset? in the forum Diagnosis Information and General Questions 2 years, 1 month ago
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]
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Susiebow became a registered member 3 years, 4 months ago
Hello Susiebo, my name is Dagmar. I’m one of the forum co-moderators and wanted to welcome you and thank you for joining our forum! We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. If you have any questions or concerns or even suggestions, just let us know, and we will do our b…[Read more]
Hi Susiebow, my name is Michael Morale. I’m the Director of Multichannel Content for ALS News Today. I wanted to welcome you and thank you for joining our forum. We hope that you will take time to go through all of the open conversations that are actively in progress, and feel free to join in. We strive to bring you the information that you need t…[Read more]