I haven't been on here much in the past couple of years, but I thought I would share that my mother finally passed away at our home in June, exactly 3 years and 8 months after she went on a ventilator. We decided to take her off the vent when she started showing preliminary signs of sepsis, most likely from one of the four chronic antibiotic-resistant bacterial infections that she had acquired over the years. It was as peaceful and beautiful as anything we could have asked for, and we timed it so that we could quickly donate her tissue to the Neurological Institute at the Methodist Hospital in Houston. For those who are still dealing with this horrible disease, I would like to ask that you consider doing a tissue donation (ask about it at your clinic to find out where would be the most feasible place to donate, or if you are in hospice, the social worker might be able to help). It's a great way to leave a legacy that could help with finding treatments and a cure. I realize it might be hard to think about that when it can be such a struggle just to get through a daily routine, but advance planning can ensure that the donation happens smoothly and efficiently. After visiting with the neurologist who diagnosed Mom and learning about the current status of autopsy research, I am more convinced than ever that a cure could be found within my lifetime, perhaps in a way that could also impact treatments/cures Alzheimer's and Parkinson's (and I mean that very seriously).
My heart is with every single person who has posted in these forums. Even though I haven't been active on here in quite a while, I learned so much from the wisdom of others. Also, I'd like to share that, in spite of the awfulness of this disease, both through the community here and with my Mom's own journey, I am able to marvel at the positive things that are able to come out of tragedy. Our adventure had some really beautiful, amazing moments--quite a few of them, in fact. God bless you all!
My heart is with every single person who has posted in these forums. Even though I haven't been active on here in quite a while, I learned so much from the wisdom of others. Also, I'd like to share that, in spite of the awfulness of this disease, both through the community here and with my Mom's own journey, I am able to marvel at the positive things that are able to come out of tragedy. Our adventure had some really beautiful, amazing moments--quite a few of them, in fact. God bless you all!