When I learned my mom had a gene mutation, it took me 3 weeks to get up the courage to tell my husband. My family is in a research study for familial Alzheimer’s and we gave our mom’s brain to science. The autopsy revealed the mutation. C9ORF they told me. Well what the hell is that? It can lead to ALS, FTD, or Hippocampal Sclerosis, I was told from our contact at Washington University St. Louis. What! How? My mom had Alzheimer’s! 23 years! 23 YEARS! How can this be? She displayed classic Alzheimer’s (AD) for over 20 years; no sign at all of Lou Gehrig’s or Frontal Temporal disease (FTD) which are both caused by the Tau protein, not the Beta Amyloid protein which causes plaques and tangles on the brain.
Every stage for mama was classic. She presented exactly like she had AD. Just as her dad, (my grandfather), her sister (my aunt), two of her brother’s (my uncles) and an aunt on her dad’s side. Now my brother has FTD. The Wash U contact asked me, “Would you like some genetic counseling? I think it could be helpful.” Uh no, a cliff to drive off of might be helpful though, was all I could muster as a possible and reasonable response.
I could not believe my eyes when I saw the autopsy results. I was working at the Alzheimer’s Association Colorado at the time of mama’s death and several months had passed and now, arrived the results in my email inbox. I was sitting straight across my desk from Dr. Dean Hardy, the top researcher for the Association. He was in town to give a research presentation to about 100 people sitting on the other side of the wall from my office. I was to introduce him in about 20 minutes. As I expressed shock at the discovery that mama had no plaques or tangles, yet her brain was +4 in each lobe (totally destroyed mass), I said to the Doc, “So this is the Tau I have heard about that gets zero credence in the research world and almost no research dollars?” “Yes,” he answered. OMG,OMG,OMG.
Tau causes Hippocampal Sclerosis, Beta Amyloid causes Alzheimer’s. The diseases are both types of dementia and PRESENT EXACTLY THE SAME SYMPTOMS! If only 1% of all people have autopsy’s, and of that 1% only 1 out of 10 have an autopsy because they are in a research study and they are looking for AD, how in the world can we possibly think AD is the Number 1 type of dementia? Isn’t it possible that we have could 5.4 million people walking around the United States with the Tau Hippocampal Sclerosis, and not 5.4 million with AD? “You have just asked the 64 thousand dollar question which has been debated for over 100 years by researchers” replied Dr. Hardy.
Memory loss is memory loss, but now I am understanding why they haven’t found a cure since Augusta Deter walked into Dr. Alois Alzheimer’s laboratory in 1904. In 2012 I was happy that our current President – Obama, had recently offered to earmark $140 Million dollars from the NIH, National Institute of Health, but the only labs that would receive any money would be those who would work on both Tau and Beta Amyloid research – TOGETHER! Eureka! Dr. Huntington Potter had just arrived in Denver to open the Alzheimer Research and Memory Disorders Clinic in conjunction with the Linda Cyrnic Institute for Down’s Syndrome. He recruited a researcher from San Francisco University Research Lab working on Tau, to come work with him in Colorado; Dr. Brianne Boettcher, and Dr. Tim Boyd had come from a lab in Florida. Finally, I had hope.
That will be another blog on another day. I will update you on some promising research they are working on. If you want to hear my interview with Dr. Potter on my radio show, Dementia Resilience with Jill Lorentz, here are the links to part one & part two. He is making some amazing progress curing AD in his mice and repairing their brains with a drug called Leukine. AND we talked about the Tau issue – of course!
Mama seemed to have slow memory loss since she was 58 years old. It gradually worsened. She had her tearful moments. We denied it at first as a family. She just wasn’t listening, she didn’t hear you, she’s just overwhelmed. Then she got lost again and again. She was having trouble learning new processes at work. She was wrecking the car. It kept getting worse. My husband and I hired a 40 hour a week in house caregiver for her. We all took turns caring for her. I have 5 siblings, so the 6 of us worked together. I had experience in this area so I became the family Information Resource Officer. I read every book I could get my hands on. I worked the help line at the association for the next 6 years. I taught the family caregiver class for the next 7. I attended support groups and then facilitated them. Even working at the Alzheimer’s Association didn’t shield me from the pain of losing my mama to this dreaded disease.
As a family we worked through every stage, every emotion, every trial and tribulation. There were many. We had many moments of joy as well. People kept telling us how rare it was for a family to get along and work together. I hope that’s not true. I attribute mama having somewhat of an easier time with this disease, to the love and compassion we showered her with. We had more than our share of heart-break I can swear to you. In fact, we had no idea how bad it could get, but we were about to find out. That will be outlined in a book I am writing and will release in 2018.
The only thing that saved us was a class about how to be savvy caregivers. I taught that class for 7 years until the Association discontinued it June 2014. I left the Association in March of 2015 and I created a new and better class for families. It is 4 hours shorter and 1000% more comprehensive. I will have excerpts of the best tips form my training for families & caregivers available soon on my website.
Today, I try to stay healthy and positive, but I would be lying if I said I wasn’t concerned. What I do for a living won’t shield me. I could find out if I will get it but I don’t want to know. I am in a research study. I want to live my life and be happy. I do everything I can to work on my memory and practice retention and memory games/exercise.
But If I am honest – Once in a while, I AM SCARED.
By the way, my husband was unfazed. He just hugged me and said he loved me. “Besides” he said, “cancer runs in my family. I guess that makes us even.” I am blessed to have him in my life.
Please tell me how you feel about getting Alzheimer’s. Are You Scared? Please share with friends and join my email newsletter list at the bottom of this page for upcoming training, tips and latest research information. Click on the heading of this article to add your response.
Jill Lorentz is the President and Owner of Summit Resilience Training, Dementia Education for Caregivers. She is also the Host of KEZW Cruisin’1430am Dementia Resilience with Jill Lorentz, which airs Sunday’s 10:00-10:30 am MST. Jill teaches families and professionals strategies and techniques which help them to feel understood and allows them to relieve stress so they can enjoy their lives while care giving. Listen to Radio podcasts with helpful information by clicking on https://summitresiliencetraining.com/542-2radiopodcasts/Content goes here[/author_info] [/author]