Frontotemporal Fun ? Oh no it isn’t!

birthday images Today is my birthday. The second one that my husband has not been alive for, the third when he was not with me. Today is also the second anniversary of the day that he left our home for the last time. He went into a facility that would care for his new needs better than I could. A place where they would try new medications and deal with his physical needs. His frustration and combativeness. His lack of insight into the truth. The bastard disease had finally pushed him to new limits of mental anguish. Unable to fully understand what was happening, but alert enough to know that something was. Something that had previously been insidious but now was running rampant through his brain. It scrambled his thoughts and erased his prior life like some brainwashing machine.  Repeated confrontation and insult to an already dilapidated organ.

  • Pleasure takes on a different form in FTD. It becomes more basic. Those things previously enjoyed are erased.
  • Food often becomes a source of obsession. Sometimes the person will only eat one or two specific items for a while. Sweet things are always welcome however!
  • In earlier stages, things like jigsaw puzzles or games meant for pre-teens can capture their attention for a while.
  • People with FTD often enjoy physical activities like dancing, kicking a ball around or walking.
  • Lack of emotional insight can inhibit the ability to experience pleasure.
  • Aphasia or just the inability to express thoughts can lead one to thinking they don’t like anything.
  • Just keep trying different things to eat, drink, do.
  • There’s nothing to say YOU can’t still try to have fun.

Anyway, my blog topic  today was meant to be about fun. Nothing funny about FTD of course. There are moments of humor, but not really fun per se. As the responsible party of the group, you always have to be on the lookout for inappropriate behavior and frustration. It’s never-ending. You never get a break, even when you’re doing something fun, like a vacation or Christmas. Because your FTD’er is never on a break.

The bastard disease doesn’t take a break.

Hotel Del

So here I am at this beautiful hotel in California. Celebrating my birthday with some of my favorite people in the whole world. There are more favorites missing, but we’re still here to have fun. Fun means something completely different nowadays.

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2 thoughts on “Frontotemporal Fun ? Oh no it isn’t!

  1. Happy Birthday Deborah. I hope that you have been able to leave FTD in the back seat for a few hours and enjoy being with the people you love. Being with my girls or my friends is a lifeline for me – people who live in a real, meaningful world .

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    1. Thanks Toni. I spent the weekend in San Diego at a very ritzy hotel with two very close girlfriends. It was a great time and I am returning refreshed and renewed (if a little tired and hung over!) Hope things are peaceful for you..

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