Recent content by Chumpy

I'll mention that info to the respiratory therapist and ask about the other mask too. Thank you

Diane, Yes I am very thankful for your site. It has helped us tremendously! Keep fighting a cure is coming! Thank you for fighting the fight and sharing your life with us In Hopes to help others!

Laurie, I think it's kind of both. He did just have his setting changed a couple of weeks ago to allow a higher volume. That's what the respiratory therapist said, he was hitting a ceiling and needed more volume. I'm still learning about the trilogy.... His says haven't been too bad, but he's...

My PAL has bulbar onset ALS. He is facing deciding on trach. He has been on NIV for about 8 months and his diaphragm has become weaker, pulmonary Doctor has recommended trach. My PAL wants to make an informed decision. Yes a lot of information on web, but he wants current, straight from other...

Tube feeding help.... My husband has an ongoing nausea issue, when doing feeding, if I bolus he tolerates about 500ml pushed in about 10 minutes but only twice a day. He stays nauseated all day. Taking 2 different meds for nausea already. Not enough nutrition. We've tried slower over night with...

What did he do for his bph?

Re: Best Tablet for PALS Thank you all for your thoughts and experiences. We've ordered an inexpensive tablet. Figured we'd try different apps and see how he feels and does. This way if he has issues with the easy ones we will know not to go overboard mad spend money on special things he may...

I have read thru the past posts. Just wanted newer information of available . Thanks for the heads up! At this point anything is worth a try!

Chumpy still here! Grumpy too! Lol my new nickname for my PAL.... I LOVE HIM But he is a cranky fella! So to update, progression still super fast and scary. FVC is at 40%, down to 114lbs from original weight of 200lbs 5'11".... Doctor wants him to do tracheotomy, he is using mask with the...

Any information on this would be great! PAL has Bulbar ALS, but not the laughing and crying. We've heard good things on the bulbar side, but concerns on side effects! Please share your experience with this medicine! Speech is almost gone, swallowing barely, FVC 40% so diaphragm is getting...

Ok looking for the best tablet that will work with PAL. One that is easy to communicate with and use when hands are having issues. Maybe one that can handle being used for communication application too. LET US KNOW THE PROS AND CONS OF WHAT YOU HAVE FOUND AND PREFER, cost effective too please...

I started my husband on sublingual B complex with B12, I've noticed an increase in his energy levels. Not Hugh but enough to be up and out of bed. Tried getting Doctor to do B12 shots but he said that was shown not to be effective..... Once again UGH, WHY NOT TRY! So since Doctor won't I do what...

The Chumps are still here! Taking things a day at a time! Still having issues with weight loss.... Trying different blends and boosting his calories! Hands are getting weaker, having a hard time putting his mask on and off for the trilogy. Plus less time without it, he's feeling his weakness...

We were able to get approved for 61/2 hours a week for assistance with care, personal care, shower etc. it's nice to have a helping hand. But it's crazy the things they won't help with, like feeding tubes. If I go back to work, there's no one to do his feeding. So I'm stuck in a catch 22, so to...

Thank you, so true. And I do, read a lot of the posts. I find it helps with so much. From putting things into perspective, to helpful ideas to handle new hurdles!