feeding tube

This is not a decision my husband has to make right now. He can still eat and drink, although some days are more laborious than others for him. I prepare softer foods and high calorie smoothies for him to make it easier and that's working for now. He's actually up 12 pounds in the last 2 months...

My sweet man is getting so weak. He is just done. He wants it over. He has a DNR (Do not Recesitate) in place. He does not want a feeding tube, a vent or any measures that will prolong his life with this disease. On Tuesday, he was enjoying a beer when suddenly he spewed it everywhere and was...

Jacqui Devine‎ALS We are in it together 20 hrs · Just want to write a note to those with ALS... As a daughter of someone who had ALS, and as someone who helped reposition my dad, take him to the washroom, run or stop his feeding tube, rub his back, help shave him, cut his fingernails and...

My tummy is raw from the bumper on my feeding tube...any suggestions? I already use a gauze bandage but that doesn't seem to help. I also have a lot of skin granulation it is very painful! Help!

Bad News; My seated FVC down to 68% from 85% my prone down to 48% from 67%, right hand strength and left leg down approx 25%, clinic visits moved from 3 months to two months. Concern about my neck and chewing. Good News; FVC now qualifies me for DPS (Diaphragm Pace making System), they did...

Hi all, I've posted a few of my concerns about my Dad, and I thank you all for reading and responding. This new issue is quite awful. My dad was diagnosed with ALS in August 2014. He seemed to have "a light case" at that time, but has since developed quite a bit of difficulty breathing. He...

I've been learning from you all since March 2015. It's time I got involved! Just call me Kat... In April I attended my first local support group meeting and found it very informative. One of the next things I intend to do is get established at the local ALS Clinic in Tampa, Fl. I have been a...

Hello. My husband was diagnosed with ALS in December 2012. He worked until Feb 2013 when he had to take a medical retirement. Now he is in a wheelchair and about the only movement he has is being able to turn his head a little. He is a veteran and I am his only caregiver. I do get help from...

Hi, This is my first new thread. My dad, aged 78, has ALS. He was diagnosed last summer. He and my mom live far from me- and my siblings, but we maintain regular communication. Specifically- they are 1200 miles away- in the Florida Keys. Fortunately, I own a home in the same community- but, for...

They are not recruiting yet. If you qualify keep an eye out though As you can see the criteria include symptoms under 36 months and ability to swallow the pills. Also no severe cardiac issues. There will be 12 sites Retigabine is an epilepsy medicine. It was found to help in a study using IPS...