by Ashley
It’s October. We all know what that means. Breast cancer awareness month, right? Pink everywhere!
Which is fantastic! We all know someone who has been affected by breast cancer.
But do you know what other “awareness” week is going on right now?
Frontotemporal degeneration awareness.
Fronto-What?
Frontotemporal degeneration. Fronto (as in the frontal lobe), temporal (as in the temporal lobe) degeneration (as in…degenerating).
So, I guess the cat’s out of the bag. This is what my Dad’s got.
It’s a terrible, dehumanizing, crippling disease. It destroys the very essence of the human being.
Right now there is no cure. Unlike Alzheimer’s disease, there aren’t even any treatments to slow progression (just meds to help manage side-effects, such as OCD-type qualities or anti-psychotics to help assuage delusions/hallucinations).
I’m not going to pretend to be an expert. I’ve read plenty, but we’re still relatively new to the disease as a whole, so I’m not going to spout off a lot of statistics at you. You can read about it for yourself.
Initially I wasn’t even going to post anything. I’ve never revealed my Dad’s illness. But why suffer in silence? This dementia is the second most diagnosed dementia for people under the age of 60. And there is a serious lack of funding right now for it. Mainly because (I can’t help to think) no one has heard of it! What is it, even!? What does it do?
In short? It wreaks havoc. It causes the person’s thoughts and behaviors to change. It will likely force the diagnosed individual into early retirement (or could precipitate an untimely termination). It robs the person of his or her very essence, changing fundamental personality traits.
Frontotemporal degeneration awareness week spans from October 4-11. As you are inundated with breast cancer awareness messages in social media, maybe take a moment to think about this lesser known disease that is every bit as crippling and debilitating. This disease for which there is no chemotherapy or radiation treatment. For which those diagnosed are rarely seen as heroic; no imagery of warriors “battling” the disease. Instead, most are ostracized. Their odd patterns of behavior cause people to cut social ties, forcing them into an increasingly withdrawn, sad, and lonely world.
Given the closeness to home, you can bet that this is going to become something very near to my heart. As we get out of debt, I’d love to be able to start donating to the Association for Frontotemporal Degeneration to raise awareness and provide funds for research. With any luck, one day we’ll have medications to help slow the progression of this wretched disease. Seeing the physical and mental anguish it causes is nothing short of heart-breaking. Research is needed. So spread the word.
Hugs to all!
“Be kind, for everyone you meet is fighting a battle you know nothing about.” (source)
Hi, I’m Ashley! Arizonan on paper, Texan at heart. Lover of running, blogging, and all things cheeeeese. Freshly 40, married mother of two, working in academia. Trying to finally (finally!) pay off that ridiculous 6-digit student loan debt!
I am so sorry your family is going through this. It’s hard to see our parents age, but a disease like this is heartbreaking. It sounds like your family is pulling together through this and that can be a comfort during these hard times. Take care of yourself as well.
Susan
Thank you for sharing this information about this devastating disease. Hugs to you, your family and your father as you take this journey.
I am so very sorry this is what your dad has. I cannot imagine how it must be for you and your siblings to deal with this.
Wishing you and your family lots of strength.
Thank you for sharing. This is part of what you are living with, and will affect your journey out of debt as much as having children, a husband out of work, or a cutback in hours. It will be a challenge for you to balance everything on your plate right now PLUS debt reduction, so letting us know, will help us adjust our expectations for you and temper our suggestions for ways to save money.
I am so very sorry to hear this. I had never heard of it; what a horrible disease. Prayers going up for you and your family.
I’m so sorry to hear about your Dad’s diagnosis. Prayers to you and your whole family!
Thank you so much for posting this information. I am so sorry that you and your family are having to go through this, but thanks to your posting this, I think I now have a better idea what could be wrong with my mother. Your sharing has helped someone else, so thanks for planting this seed and for sharing something so personal.
Oh Cathy! I sincerely hope (for your sake and your mothers) that this is NOT what she has. But if it is, I’m glad that my message may have helped to identify her issues. It is often misdiagnosed as a mental illness (we initially thought this was the case with my father as well).