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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)


Change of Plans

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Sooooo, THIS happened over the weekend.

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If you ask the girls the story of what happened, here’s what you will hear:

Bailey:  Brooke pushed me off the giraffe!!!

Me: The giraffe????  Do you mean she pushed you off the bed???

Brooke: NO! I pushed her off the giraffe!!!!

 

We do have a stuffed giraffe chair animal thing (if you’re curious for reference, it’s similar to this one, but way cheaper. Ours was like $20 from Walmart 2 years ago). But I still have no idea how being pushed off of a chair that is located on the floor – the seat no more than 6 inches above the ground – could cause an injury. No idea. But somehow, my offspring found a way.

The injury actually occurred on Friday night when they were supposed to be in bed, but were actually up rough-housing (hey – go figure – you do something you’re not supposed to and you end up getting hurt! Tough lesson to learn, kiddo!).  I checked Bailey’s arm and she was able to move everything so I just made her go back to bed.

If you recall from the end of this post, we had a jam-packed schedule last weekend! Saturday morning we got up and met our friends at the local splash pad. It was there I noticed Bailey still was not using her arm – like, at all.  The splash pad is adjacent to a little playground and when the kids decided to go play on the playground it became painfully obvious that Bailey still had a problem. She couldn’t climb the ladder to get up to the top of the playscape. If anything, her arm seemed to be doing worse. She was holding it into her body and not using it at all. I called our playdate quits early and headed home to change out of swimsuits and immediately headed over to urgent care. I was pretty sure nothing was broken, but I thought it was possible she had a fracture or bad sprain or something and decided the injury justified medical attention.

We were at the urgent care for 3 hours (ugh!!!) and in the end, the doctor recommended against an x-ray. His rationale was that we don’t want to expose a young child to unnecessary radiation, and since we were pretty sure nothing was broken, the course of action for most of the remaining possibilities (strain, pulled muscle, bruised bone) would be the same:  a sling!

So he hooked Bailey up with a super-cool kids-sized sling and sent us on our way with instructions to keep a close eye on it and that if things hadn’t resolved within a week, that we should come back (or go to our primary care at that point).

Bailey was an excellent patient and has actually really enjoyed her sling. Within just the past couple days she’s already regained quite a bit of mobility. The arm is still sore and she needs some additional help with certain things (e.g., getting dressed has been hard one-handed), but she’s already on the mend.

Unfortunately, the injury basically blew all of the rest of our weekend plans!! Our preschool did their bi-annual Parent’s Night Out on Saturday evening, but at that point Bailey was still having a tough time even feeding herself and going to the bathroom (pulling down pants, getting toilet paper) and I just didn’t feel good about dropping them off with a ton of other kids and taking off for date night. Probably would’ve been okay if it was a babysitter in our own home, but the fact it would be a bunch of kids, etc. I just didn’t feel good about it.

And on Sunday we were supposed to go to another child’s birthday party, but the party was supposed to be at a local indoor trampoline park. That also seemed like a pretty bad idea for a child with an injured arm. We’ve been once before (for another party), and I knew that falling down was inevitable. No big deal most of the time, but I didn’t want to chance her falling on her arm, or falling and trying to instinctively catch herself with her hurt arm, etc. So that was that.

Our big, fun weekend plans turned into 3 hours at Urgent Care and spending the rest of the weekend taking it easy at the house. I like relaxing and taking it easy with the best of them, but it was a bit disappointing given our excitement over all the fun!

Soooooo, so much for our original plans. Isn’t that just life for ya?  I’m just thankful it wasn’t worse. I’m also thankful for health insurance and our flexible spending account with plenty of money in it to cover this expense. They didn’t charge us anything at the time (said they’d bill insurance), but I know we haven’t quite hit our deductible yet so I’m expecting a bill at some point. That being said, this incident might be enough to tip us over into having our deductible fully paid, which would be nice. So we’ll see what the financial implications are. Either way, I know we’ll be fine. I love that peace of mind!


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