free

My mom passed away today after being diagnosed with ALS last December. 26 years will never be enough time for us to have together but I am happy she is free now. After she lost her ability to walk she was so miserable. I believe that is when she decided it was time to go. She passed away 1...

Mom is now on morphine every 2 hours and oxygen 24/7 as prescribed by our hospice nurse. They think she has less than a week now - more like a few days.. but her body is young (she's 56) and her will to live is strong. She's trying to fight it. She is sleeping most of the day now and opens her...

I just need to rant here tonight because it has been a crazy tough week at our house. Along with physical changes my mom's personality seems to have taken a drastic change. I know anger is a part of dealing with this disease and potential FTD. She seems unrecognizable to us now and has been...

I almost posted this in the Tips Tricks and Gadgets forum, but decided to stick with this one. Starting Tuesday, you can enter a contest to win a playtex ventaire bottle and the adapter tip which lets the bottle be used for gravity feeding. The advantage of this bottle over using the...

Our team "Hewitt Strong" participated in the Tulsa Walk to Defeat ALS on October 15th. It was amazing! My PALS is such a special man. Appx 75 friends and family including his 88 year old dad showed up to walk and support him. It was such a special day! A very nice police officer allowed...

Life has gotten in the way of my spending much time here lately and, when I do come to the Forum, I mostly read since I truly have no sage advice to offer folks here. However, I did want to take at least a little time to offer my thanks and gratitude to the many who share their experiences here...

hello everyone i posted about 3 months ago and was given a diagnosis of bfs by my neurologist although he had concerned over my calf atrophy. It was upon examination definitely smaller on the left calf and also was my thigh. Since then the twitching has continued possibly slightly more...

The day before we left for our trip to Yellowstone I had the opportunity to ride Vail's alpine coaster and zip line. I had been invited to do so by the folks at Vail Resorts. They operate what is essentially an amusement park at the top of Vail called Adventure Ridge. There are many...

Update on my mom, she continues to decline quickly. She is now exclusively in a wheelchair as she can no longer use the rollator. She has a home health aid that comes in two times a week for two hours in the mornings but home health aids are expensive. My mom doesn't qualify for palliative or...

Tobii Dynavox I-15+ Gently Used This belonged to my Mama and unfortunately she was not able to use this much. When she finally got this she was in the later stages of ALS and has since passed. I really wish we could donate this but sadly we still have funeral expenses to pay for :( This is...