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Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
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! :D
 
I'm so sorry that your Mother is gone from your side. I had been thinking of donating my body for the cause and because of you and another Memorium I read this morning I believe I am going to do the same. I thank you and I thank your Mom. We carry on even after we leave this world to be with God. May you receive God's peace, comfort and love.
Love
 
So sorry, Carolan. Sending you strength and peace. Yasmin
 
Sorry for your loss Carolan, and thanks for letting us all know about what can be done to help the research cause.
 
Thanks for sharing about the tissue donation. I know that the ALS Clinic at Mayo in Jacksonville is set up for tissue donation, I received info on it when i went for my second opinion back in May. My family is aware of my wishes for tissue donation. I've signed up for every little research piece that comes along at my clinic in Augusta. Some are simply questionaires or a tube of blood and only take a few minutes to complete. My daughter was even able to donate a tube of blood for one study at Mayo. Please ask at your Clinics what studies are available so that we can help to speed up the process of finding a cure.
 
Carolan, So sorry for the loss of your mom. Thank you for planting the seed for the idea of planning ahead for tissue donation - another way to contribute to the fight against this monster disease. Blessings to you and your family.
 
Carolan, My Prayers go out to you for comfort and peace at this difficult time. Thank you for sharing with us all. You also are an inspiration to us and such a loving and brave daughter. ((HUG))
 
Thanks for sharing, Carolan. And thanks for the info.

I'm sure she is at peace.
 
Thank you for sharing. My blessings and prayers are with you and your family. The information is so valuable and you stated the need so well. Thank you! God Bless!
 
I am sad that I just read this now as I had inquired with the ALS clinic at the university of mn what could be donated to help with research and got no response. My mom passed a month ago and i feel obligated to ask the question why her death can't help in the research to cure this horrific disease.
 
That is beautiful, that your mother's fight with ALS, is not over, she will live on through the research they do. i like to imagine that my mothers donation, will be in the study that finally leads to a cure! Its so important to make these donations, i know it has to be VERY difficult to make a decision like that, but it is SO hard to get the tissue they need to use for research, practically the only way is through donations from those, who have suffered with these diseases. so thank you, your family , and of course your mother, for the kindest of donations. One day, we will stop loosing mothers and family and friends to MND related diseases. on that day i will celebrate, and know that my mommy helped find a cure for ALS! *happy dance*
 
LINDA, your mom still helped, every person with ALS helps in finding a cure, each doctor appointment she had, each time she was evaluated, and her progression was documented, all of this is documented and used for research purposes. The information they gathered from her during her progression, is used to study and learn about ALS. so please dont feel like she didnt help. she did! also, to make the donations, you usually need to be taking part in a study of some type, like my mom went to the mayo clinic, she was participation in many clinical studies, one of which required a donation of her brain and spinal, and other tissue. so this was arranged over a year before she passed away. it has to be done early, and has to be pre-arranged. this is due to the speed that the tissue begins to "die". they had to pick my mom up immediately, and take her to jacksonville within hours of her death. anyway i just wanted you to know, that it isnt something you could have done after the fact, as far as i know. and rest easy, your mothers fight was documented and will be used for research. i hope you are doing well, and find some relief here soon. i just lost mom a week ago. rough times. god speed.

Elizabeth
 
So very sorry about your mom, thanks also for the info..
 
I've made arrangements with my Clinic for donations of brain and spinal cord samples. Sorry for your loss Carolan.

AL.
 
Hi Carolan,

Very sorry for your loss. Peace.

Paul
 
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