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FTD Awareness

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Hi, friends! Thanks for all of your comments on this post! I have loved reading your success stories. It has been so helpful to read about so many who have successfully navigated a mid-life career change and come out on the other side better for it. I so appreciate your support!

Today I’m re-posting an old blog (originally published here). Partly because I’ve been dealing with some serious FTD-related issues lately. The short story is that my dad has now turned to self-harm when he becomes frustrated (which is always). It’s created several mini-emergencies, as he’s cut himself with a razor, hit his head with a hammer in Walmart, and frequently punches himself in the stomach/gut area. My siblings and I are panicked trying to get these symptoms under control. He has a psychiatrist appointment today so – fingers crossed – we can tweak some meds and help reduce some of his anxiety and frustration. I just cannot even convey how sh*tty this disease is. And it gets virtually NO attention. There’s no funding for medical research whatsoever and, currently, there are NO medications available to help slow the disease’s progression. It’s just heart-wrenching to watch.

So, while I have this platform with a little bit of readership (thanks for reading!) I just want to do my part to try to raise awareness. You may also be interested in seeing this very short clip from the Today show. An expert in the field answered some questions about FTD, discussing key differences between FTD and Alzheimers. Check it out if it interests you.

Have a great day!

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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)

Ashley

Texan at heart; Arizonan on paper. Lover of running, cheese, camping, and family (fur-family included!). Blogger, motivated to get out of debt YESTERDAY! Follow along with my journey!

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4 Comments

  • Reply Juhli |

    What a hard situation to be dealing with for all of you. My SIL’s mother has frontal lobe dementia which I imagine is the same thing and it was really hard to watch her progression and the family’s struggle. Hugs.

  • Reply Maria |

    Hi Ashley, I am a long time reader and rarely post. I am sorry to hear about your father’s health issues. I had never heard of FTD before. Hopefully with more awareness there will be more funding and research to find a cure. I hope the psychiatrist can help your father with the anxiety and frustration he is going through. The quote at the end is so appropriate. Sometimes we get so caught up in our own lives that we don’t realize what other people are going through. Sending positive thoughts your way!

  • Reply debtor |

    i can’t even imagine. *Virtual hug*.

    Thanks for doing your part to spread awareness.

So, what do you think ?