Feb 22, 2019 Latest post:
Aug 30, 2019
Hello, My name is Valerie Onstad and I'm living with A.L.S. (Amyotrophic Lateral Sclerosis). On September 18, 2018, my fears of carrying on my mother's legacy was confirmed. My genetic test came back positive for the SOD1 mutation. My Mayo Neurologist, set me up with the ALS Clinic (which I'll start in November and see all corresponding Doctors for my diseases and issues). If I need to be seen sooner I just call them, or see my regular doctor. There is no known cure and based on my family history my life expectancy is 12-18 months. There are medical advancements in ALS and the only one that I'm in, is Stem Cell research. Studies have shown that it could help prolong my life, and in truth all I want is to be given a chance. While my arms are becoming weak (range of motion to stop them from becoming stiff), breathing is compromised (bi-pap machine should help once it's here), eating is a long process (and very important to maintain weight, fatigue (requires taking lots of naps), medications to keep me sane, and even though my voice has changed, I'm still me a smart ass as always, just a little slower. Please take time to read up on ALS, and be considerate of all people who have diseases or illness that cannot be seen by the naked eye. So with that, yes I am dying. BUT I choose to focus on living, rather than curling up and doing nothing. Thank you for all your continued support for me and my family, love you ALL!
-Reposted from Val's Facebook Posted September 25, 2018
Fast forward to February 2019:
With mom's disease progression she can no longer use her fingers to text, type, call or communicate and thus leading us creating this website. Everyone is always asking us how our mom is doing and this is one central location for all the information to be out there. Val is now on her Bi-Pap 95% of time and it is really neat because all her information is blue-toothed right to her doctors to access whenever! She uses both a suction machine and a cough assist throughout the day, suction for all of her saliva and a cough assist forces pressures in and out to create a simulated cough. She now has a feeding tube, where she receives all her meds, hydration and nutrition, mom no longer can take anything orally because the shallowing and secretions make it impossible. Communication is really tough between the secretions and machines but we make it work between yes/no questions and her writing with her feet. Mom spends her days visiting with us kids, few family members, few friends, her cats, grand puppy, watching Netflix and watching the birds and squirrels.