FTD Fronto-Temporal Degeneration
Non-Alzheimer's type dementias present and are treated differently. FTD is commonly misdiagnosed, causing more frustration. Share your story!
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What's New Today
4 days ago
Last night DH and I had the weirdest conversation - I felt like I entered thr twilight zone!
We had a lovely dinner out celebrating his birthday and our 22nd anniversary (defacto) which is later in the week.
He held my hand and said he was sorry for being a bit difficult over the past 2 years and that now things will be better.
He has NEVER apologised ever and it is the first time he has recognised things might have been even remotely difficult for me! wow - I was stunned, said thank you and have been waiting for any reverting to 'normal' - all has been good today!
I even heard him telling an old school friend about his 'memory problems' today - quite openly.
I'm enjoying the moment - not sure what to make of this change at all!
7 days ago
This poem is dedicated to all of us who are in this boat Thank you guys for helping me write again x (hugs)
The Long Goodbye
When one of two becomes the soul keeper of memories shared no longer
When one grows up, while one grows down intimacy fading a life together stolen
A shrinking, eggshell covered world of swings and roundabouts snakes and ladders
Mental potholes and minefields
But music makes me happy and ocean song soothes for a while embrace the moments of calm while you can
Nancy said it best
The longest goodbye © 2016 Katherine Buchanan
Thankyou everyone X
Shirley C said...
20 days ago
I haven't posted in quite some time. Husband has FTD. Diagnosed about 2 1/2 years ago. Update-now having delusional thoughts, bizaar accusations example-Ipushed him out of the car as we were driving. Also threats of beating the s### out of my 42 year old son with Williams Syndrome. Has 4 times taken off from the house (not wandering) but some imagined event. I've called 911 twice. One time said he wanted to punch the officer in the nose. Today again-police called and said he wanted me to pick him up. Thank goodness my other son went with me. Last time it took me 1 1/2 hours to get him in the house. He said he didn't know where he was going-maybe a bridge to hide under. I told him ther are probably some not very nice people there and he told me then he'd probably have to kill someone. I'm a wreck. He is not safe to others or himself. Dr put him on Seroquel. I'm seriously thinking about Memory Care. He goes to a Day Program at this particular Memory Care Facility and does better on those days (while he's there). Anyone experience this type of behavior? I'm on edge and numb all at once. Thanks for any input
5 months ago
The AFTD HOPE Rising Gala - announced for September 9, 2016 at the Pierre Hotel, NYC. They are getting organized and sponsorships so ticket prices will be forthcoming. I plan to attend - maybe will see some of you there - although for me too, it will involve travel to NYC. They are honoring Susan and Si Newhouse's new monetary donation for research, and will salute businessman David Zaslav. See aftd.org for more information.
6 months ago
Hi. I'm at the very beginning of this journey and have only just been able to convince my partner of over 20 years to participate in some tests (with the help of his psychologist) and support of his GP. The problems I'm facing are really the severe mood swings, anger and denial at the moment. Although even worth a diagnosis I'm not sure how that will help at all! I'm already to manage by using some techniques I've found here and through the local Alzheimer's organisation to manage the memory issues and strange behaviour followed by the associated frustration and anger. It's so hard, especially as my partner is only in his mid-50's and is adamant I'm making stuff up, or am neurotic. At least he's willing now to have tests at his psych's suggestion - even if it's just to 'prove I'm wrong'. I have no idea what tests will be done, or what will happen afterwards.
How accurate are the tests? How much damage or protein/plaque build up does there need to be to show up in scans?
The symptoms have been progressing for at least 3-4 years in terms of personality, behaviour changes, moodiness, loss of interest in things he used to like, loss of empathy with others, moving into outright anger and aggression. These, plus the short-term memory issues about events and conversations, have gotten worse in the last 2 years, and far worse in the last 6 months. I only spoke to someone for help 2 weeks ago and so we've moved right into trying to get tests.
Now I'm feeling as though I'm the baddie because that's just when we were about to enter a 'nice' almost normal period again... As long as we don't talk about anything to do with the symptoms!
I hope you don't mind the vent, or me trying to get a clearer idea on what to expect.
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