This week is Frontotemporal Dementia Awareness Week. In my quest to educate people about the disorder that has found it’s way into our home, I thought I’d share what I have learned since my husband’s diagnosis.
The most helpful site for me has been the Association for Frontotemporal Degeneration at: http://www.theaftd.org/learnmore. I feel like their information has been accurate and easy to wade through. I teach second grade, so I live in the land of little people and therefore need to simplify every topic. This mindset has made it easier for me to wrap my head around a very confusing topic. I really just want bare facts about what my husband is facing, so that the kids and I know how to plan. So here it is: the bare facts put simply.
In a nutshell, my husband’s brain is shrinking. My father used to joke about having lots of gray matter, and that was why he couldn’t remember things. He doesn’t joke about it any more. It isn’t funny. Actually, the gray matter are dead spots on the brain, and when information travels through the brain and it hits those areas, it needs to recalculate, similar to a GPS. That is why our family waits for my husband when he is having difficulty word finding, because it often takes time, but if we wait, he gets the word he is looking for (or he gives up).
For my husband, the MRI, PET Scans, and Neurological testing demonstrate loss of brain volume, blood flow or neural activity in the left temporal lobe. The left side of the brain most frequently manages language function. This means that my husband has Semantic Dementia. FTD is the umbrella, Semantic is the specific subtype. Semantic means language. This means that as he progresses, he will have difficulty understanding words, especially nouns, and recognizing objects. He will have difficulty generating the key words within sentences and his speech will become increasingly difficult to understand. He will lose the ability to recognize the meaning of specific words or to name familiar, everyday objects.
My husband is in the early stages, so he is often able to “talk around” the meaning of a specific word he is unable to generate. We were told that he might eventually refer to a rooster as a “bird”, then a “thing with wings”, and then eventually refer to it as a “thingy”. In later stages word-finding pauses in speech become common, and my husband will have difficulty naming familiar objects.
The good new is that the majority of semantic cases are not hereditary. In our case, it may be a combination of factors, but most likely the four times that he has significantly bumped his head (TBI: Traumatic Brain Injury). The bad news is that there is no cure, and in most cases its progression cannot be slowed.
Additional good news is that the Semantic type does not produce changes in behavior or personality until later stages of the disease. At that time some semantic patients will develop symptoms common to the other FTD subtypes, including behavioral, social or motor difficulties. The family will have to get good at interpreting his language and providing distractions when he becomes anxious.
The speed in which FTD travels is unique for each patient, and truly depends on the health of the person diagnosed. In the end, swallowing difficulties often occur and lead to the end of life. We have been told not to waste time with legal and financial planning, because once he starts to decline, he will most likely keep declining.
In 2009, my husband went through a midlife crisis. This, we have learned can often be an indication of the onset of FTD, as well as alcoholism, extended use of prescription drugs, and head trauma.
So, what does a family do about a diagnosis of FTD? We began by making a list, and started on it immediately. This included end of life plans and a Bucket List. If anyone needs ideas, feel free to look at my early blogs. We have made FAMILY a priority, have been clinging to our faith, and spending as much time with friends and family as we can in order to fight isolation. More than anything, we are determined to enjoy each and every moment by staying as positive as possible. We have accepted the diagnosis, but hang out in the land of denial frequently. It is a great place to visit! We are determined not to waste one precious moment feeling angry and cheated. In the end, we want to feel like we ran this race with dignity and grace, being a role model to all who watch from afar, in order to bring honor and glory to our Maker.