[susiebow1949]

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.  I was able to wear my breathing mask the entire time.  Since then, I have had it replaced twice, due to it just “falling out”.  My health care provider does not offer the mic-key, so I currently use a baby’s pacifier holder to keep it from hanging.  I have regained almost 10 lbs in the last 15 months.  I still eat small amounts of soft foods to supplement the 1300 cal (4 x 325) daily diet of Kate Farms.  I have had periods of gastric distress, but overall am very happy with my decision.  It relieved the daily stress of trying to take in enough calories to maintain a healthy weight.

[susiebow1949]

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 questions.  Luckily, I’m still able to communicate well enough not to have to use the Tobii at all.  Time will tell whether my efforts pay off or were a waste of time.  One reason I chose not to voice bank was a hearing from a PAL at a support group meeting.  She shared that she had spent tons of time voice banking, but when the time came to use it, she was so disappointed in the “new voice” that she rarely used it.  Hearing that just validated my original decision not to voice bank.

[susiebow1949]

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 day.  I know some have mastered speaking while wearing a mask that only covers the nose, but I struggle with those.  So I remove the mask to speak short sentences.  Long conversations are not possible. Thanks for the tip on the neck support.  I will definitely check that out.  I have two, one simple foam given to me by the OT, the other a Vista, neither one very helpful.  Plus wearing the neck brace and the face mascot the same time is just a bit too much to handle!!

Good luck to your husband,

Susie

[susiebow1949]

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 trilogy ventilator which I use now over 20 hours per day.   My voice is weak but still able to be understood.  I am still fully mobile, but my neck muscles have weakened to the point that holding my head up is increasingly difficult.  Overall weakness and very low energy are my other challenges, which I attribute to poor breathing.  I can still talk, but lack of breath and wearing a mask all the time severely limits my ability to communicate.  I do have a cough assist, but as of now, don’t suffer much from excess phlegm or congestion.  Although, Tim, I do have a drippy nose upon waking.

Best of luck to all,

Susan