Recent content by NolaJen

My dad started with a Trilogy home vent. He initially could go 6-8 hours without it, and was able to eat without it. As time went on he needed it more and more, and eventually was on it 24/7, even when eating. Breathing difficulty is scary, I would imagine your dad will use his machine more as...

Thanks to you all:) I'm still having to remind myself that he's really gone, although I am relieved that he is not suffering and I know he's breathing easy now:) Hopefully eating a big steak and enjoying some wine. He told us all to not feel guilty for feeling relief, he was a good one:) They...

thank you! It was a different death than I've witnessed in the past. Due to him being on the Trilogy they had to keep upping his comfort meds to be able to decrease the trilogy setting, until we were able to turn it off. It was an INCREDIBLE amount of morphine and ativan he was getting, but...

It was controlled, he was comfortable and we were all there. I know I have only been here a short time, but I want to thank you all for your support. We are looking for ALS patients, in our area, that could benefit from some of his equipment.

I posted a few weeks ago. My dad has been in the ICU since 12/26. His perm-cath was infected and he had pneumonia. Sadly, they also found that he has a volvulus, which is a kink in his colon, often caused by constipation/immobility, so a secondary issue to his disease. The fix for the kink is...

Atsugi - thank you so much for sharing your experiences. I am, fortunatlely, not alone. My stepmom is his HC POA. I think part of the problem is he keeps changing his mind. He will say he doesn't want the trach/peg, but when he gets in crisis (which is happening more and more frequently) he will...

Thank you so much for your replies. Much love to you all.

I posted a long time ago about my dad. He does not have MND, they still think he has CIDP (although an outlier variant of it). There are some differences in his disease and ALS, but ultimately they look very similar. He is unable to move any part of his body, he is on a trilogy home vent 24/7...

Thanks for the replies. He has had a muscle biopsy, not sure about nerve. He saw another neurologist last week and he really doesn't have some of the hallmark ALS features. He had a cat scan today, they wanted to rule out a pulmonary embolism. I just don't know what to do. He was unable to...

Ok, thanks. They did stool softeners, laxatives and even an enema. Things have started to move but for the future I will tell him to drink more water. I think he plans to continue with the stool softeners. He's always hesitant to drink much b/c he can't go to the bathroom on his own. However...

Just to clarify this neurologist does have an ALS clinic.

Thanks for the replies. He actually sees a well known specialist in this area. He's had such a bizarre case. He has also been having extreme constipation. He saw his primary care twice last week. They did tons of blood work, a chest x-ray and abdominal x-ray. He had a cardiac ultrasound. He is...

Hi, I hope this is an appropriate place to post this. Four years ago my dad started having drop foot and other symptoms in his body, including twitching. For a year they doctors thought it was a pinched nerve and other things. By the next year he was experiencing weakness and difficulty walking...