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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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KatherineBuck said...

2 months ago

How is everyone going?

Sbltennis said...

2 months ago

need2understand said...

4 months ago

I just wrote a long page to discover that it did not post. Husband has many signs of FTD refuse to be tested. The behavior began in 2009 or earlier about to drive me nuts, does it get any better

need2understand said...

4 months ago

KatherineBuck said...

3 months ago

Sbltennis said...

4 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.

gin5371@aol.com said...

4 months ago

Are there any support groups in the Phoenix, AZ area

Mary R. SC said...

4 months ago

Sbltennis said...

4 months ago

KatherineBuck said...

5 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.

x

Sbltennis said...

4 months ago

Sbltennis said...

4 months ago

Shirley C said...

7 months ago

my husband was diagnosed with FTD 2 years ago. He is 71. Took him to the doctor last Monday. He has Community Aquired Pnuemonia and was given a 10 antibiotic (Levofloxacin). Anyone else dealt with pnuemonia?

Shirley C said...

7 months ago

Sbltennis said...

4 months ago

SEH 754 said...

7 months ago

Hi, My husband is 62 and approx. 4 years ago was diagnosed with FTD. He no longer speaks, only smiles when prompted, walks slowly and sometimes needs assistance in eating. Up to now he has not really had any bathroom problems. Last night I heard him up late - out of bed - walking around. I checked on him and got him settled - but didn't discover until this morning that he had urinated beside the bed. I know things like this can happen and will happen more in the future, but am curious if anyone else has suggestions with how to handle this in the early stages. I appreciate any suggestions. SEH 754

7 months ago

Sbltennis said...

7 months ago

Sbltennis said...

7 months ago

Hi Florida26, So sorry to hear of this hyper-oral behavior! I wonder if plastic would break and splinter easier, cutting into his gums and mouth? Maybe just stick with a good heavy style of silverware......or a spoon? These behavioral phases pass in a few months and they go on to exhibit something else..... Good Luck!

6 months ago

Florida26 said...

7 months ago

Hi, my husband has Had FTD for 8 years and the last two have been challenging. He bites on his eating utensils bending the fork tines. I am looking for some real durable plastic/nylon utensils so he won't break his teeth. I've looked everywhere. Anyone have any ideas?

bonjb said...

7 months ago

Florida26 said...

7 months ago

Sbltennis said...

8 months ago

Theaftd.org. website is the source for all FTD answers, research, support groups, information and experts in the FTD field. Sorry to hear of your journey. Find help on our online group. Sandi

Sbltennis said...

about 1 month ago

need2understand said...

about 1 month ago

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