Our Mission

* Educate healthcare professionals

* Establish a clinic for FTD sufferers

* Support research

Wednesday, June 4, 2008

Fronto-temporal dementia

Are you familiar with Frontal Temporal Dementia?

For years I had a brother and sister that suffered from it, both have since passed away. It was devastating to our family since none of us knew for years what was wrong with them. They had been the healthiest members of the family and then we started noticing weird behaviors; they would walk in your bedroom at night unannounced, became sexually promiscuous, craved sweets, gained weight, paranoid, slowed speech, repetitive speech patterns, aggressive behaviors, and my brother started drawing flowers and mountains, my sister became a fabulous artist over the years.

We were not patient with them and these behaviors for years because we thought they were just being rude or depressed. Once we discovered what was going on, it at least helped our family understand that these people we knew all our lives did not just one day become rude uncaring individuals…they were sick.

Doctors tell us, now is like the 1980 era was for Alzheimer’s, we are just starting to hear about FTD and know that many people suffer from it, but are misdiagnosed. It wasn’t until we pushed to get a SPECT done on my sister that we could get it diagnosed. MRI’s had been done on both and with a qualified Neurologist that knows what to look for, we might have discovered it earlier…however it was overlooked. This is important information to share with families that may have similar stories.

1 comment:

beth said...

I am just beginning to read through your blog. Thank You for putting this information out here for us all! I remember how frustrated we were 2 years ago at diagnosis, I cannot imagine how much harder it would have been without the worldwideweb to help us!!