Some of you may know of Chuck’s memory loss and years spent seeking answers. He was initially diagnosed with Alzheimer’s, but this was later ruled out by a spinal tap at Ohio State University. While we were glad to have learned that it wasn’t Alzheimer’s, we continued to seek answers and a diagnosis.
In January 2023 Chuck was seen at the WVU Rockefeller Neuroscience Institute (WVU RNI). A repeat MRI compared to one from 2019 and other testing led the neurologist to determine that Chuck has Frontotemporal Degeneration (FTD).
We are grateful to have a diagnosis, as catastrophic as this one is. We have learned that FTD can cause issues with judgment, behavior, sequencing, repetitiveness, memory loss and more. It is considered a progressive, terminal neurodegenerative disorder for which there is no treatment, no cure. The journey through this is an unknown.
We share this information as a way to help others better understand FTD and to support Chuck, as well as to update with changes along the way. Awareness of this lesser known dementia, Frontotemporal Degeneration, is important. We will always be in Chuck’s corner and advocate for him. We love him so much, and we know many in the community, our family and friends will help us by lifting him (and us!) up.
I am starting a blog as a way to share my thoughts and to update others with our journey. I want people to know what it’s like to live with someone with a neurodegenerative disease and to give you a peek inside our world. It’s very hard to explain it, so I will share along the way in an effort to help others understand FTD as it affects us.
The day of Chuck’s diagnosis, as we drove two and a half hours toward home, he repeatedly asked me when we would get the results from his MRI. Each time I answered telling him we had learned he had FTD. After three or four times asking and receiving the news again, he took my hand as I drove and say “We’ll be alright”. I know we will be, but I also know that we have had rough days with more to come. We will try to remember the best part of each day along this journey.
If you would like more information about FTD, please visit www.theaftd.org. Additionally, WVU RNI is a great source of information. If you know someone that has had personality, memory or behavior changes, please consider these resources.
