Feb 17, 2019 Latest post:
Aug 29, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We are also using this site to provide updates on Mom. Thank you for visiting.
From my recollection it all began in fall of 2017. Mom said her voice felt scratchy... then over the next month or so the scratchiness affected her voice to where her voice noticeably sounded different. Mom thought she should get looked at and so she did. First at Olmsted Medical Center in Rochester where she had numerous tests, but all resulted with no evidence of any issues. She met next with a neurologist who recommended that Mom seek consultation at the Mayo Clinic as they believed Amyotrophic Lateral Sclerosis (ALS) Lou Gherig's Disease maybe the cause.
You can imagine the research we were all doing once Mom told us that the neurologist thought ALS could potentially be the issue. Mom's brother's and sister, Mom and Dad, husband, daughter, son, all researching about this disease... and if it could be true?
After the initial meeting with the neurologist, many more tests ensued. I believe there was another throat and mouth specialist, MRI, and other big tests that I don't recall the name of. We then met back up with Mom's neurologist at the Mayo Clinic about a week or two later to review the data the tests revealed.
Side note: One thing we learned with ALS - is there isn't actually a test that says "you have ALS." Instead, the doctor rules everything else out that they can, and if all those things are ruled out the doctor can say with near certainty that you have ALS. So, the big test review meeting.
The doctor shows images of Mom's brain - and on a couple of the images we saw dark spot... we all began to think it could be brain cancer... but the doctor says it's nothing - something to monitor but most likely at some point in her life she hit her head very hard and this is what is left over from the trauma. He instead reveals that Mom has ALS in his professional opinion. Bulbar onset ALS. Bulbar onset meaning that the disease first affected the mouth and throat.
So what is ALS? Kris's for the lay person definition: ALS is a brain disease that basically tells the muscles in your body to stop working. The electrical signal that occurs from when your brain tells your hand or leg to move, or your throat to swallow, etc. begins to disintegrate into nothing - to the point where you no longer can move your hand or leg, or swallow to drink a glass of water, etc.
Currently, Mom is participating in a study at the Mayo Clinic using stem cells for treatment. The injection is in her spine and causes her painful headaches and throwing up. Dad and her both notice some of the symptoms she has from the ALS seem to subside for after and injection. She has one more injection for a total of 3 which will conclude the study.
We will use this site to inform everyone of Mom's status. Feel free to post whenever you'd like for information or to share your thoughts and prayers for Lorrie (Mom).