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  • Hi Patrick, the hospital planning to discharge my mom tomorrow (10/30) but they are discharging my mom without PMV and swallow test. I know it is case by case but how long did it take you to tolerate (?)/ speak with PMV? today is my mom's 10days of staying at hospital but they tried PMV twice for about 5 min because there was a lot of secretion coming out from stoma and my mom's complaint about shortness of breath even when she was on vent w/ PMV.
    Jennifer, their first 24 hours I couldn't come off the ventilator, which is normal. After that I was able to speak. Remember if you are on the ventilator you can't speak. The vent ballon is below the voice box.
    Patrick
    Patrick, thank you so much for your response. I thought they need to put speech devise during the surgery so i was confused when doctor said they need to figure out the best way for my mom after the surgery. My mom is on trilogy 24/7 now but still able to eat/drink/speak and can even come off the mask around 15-30min. We also wanted to have surgery before ER. Her most concern is that she cannot talk at all after the surgery. She knows she will lose ability to speak soon or later but not expecting to not able to talk after the surgery. In your case, how long does it take to speak after the procedure? Best Regards, Jennifer
    Patrick, i was reading posts about trach and read your post that you had trach on January. My mom having trach/peg surgery this friday and have some questions. people said one can still talk after trach if one could able to talk before. My mom is in that case. I was wondering about your experience. were you able to talk before and now? if so, did you request certain method to surgeon? Thank you and i will look forward to hearing from you. Best Regards, Jennifer
    Merry Christmas Patrick! How are you doing? I'm missing my dad really bad. I got myself a Beagle from our local humane society a few weeks ago to help me with not be so lonely. Somebody, dumped the poor thing off of a pick-up truck. They said he's probally 2 but I think he's only like around 1. He's got alot of puppy in him yet. Take care, Kim
    Hi Jenny, when I had my pacer put in I was the first in a study for the pacer. My FVC was down to 60. That was almost 2 years ago. Last week my FVC measured at 47. I was told not to over use it keep to about 3 hours a day. It's just like to much exercise. For me I do believe it has helped. If you are considering a DPS make your decision quickly there is a very small window you have.
    Patrick
    Hi Patrick, I have bulbar onset ALS and am a Brit living in France. I have been offered a place on a trial in Paris for a Diaphragm Pacing System. I was wondering if you have benefited from the DPS and any info would be really useful to me. Kind regards Jenny
    Hi Patrick,
    It is very hard to see because it blends in so well. But, make Max's picture really big on your computer. Then on the big rock towards the right side you will see the sniper with the gun pointed at you. Took me a long time to notice it. Lol
    I will be posting something in a few days. I'm doing ok just got a new feeding tube much more comfy but that's about it.

    Patrick
    Hi Patrick,
    I haven't seen you post any of your poems lately. How are you doing? My dad seems to be staying about the same lately. It was nice weather the other week in Dallas and he was able to get outside in his PWC and he really enjoyed that. He keeps busy going to volleyball and basketball games of two of my nieces who are in high school and my brother usually takes him to a movie on the weekends. He is one of the lucky one's and is still able to eat most foods as long as he eats slow. He has trouble holding utensils but he can still usually swallow ok. Take care, Kim
    Enjoyed reading your poetry Patrick. Hope you share some more with us. Merry Christmas! Kim
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