About FTD

In the documentary Planning for Hope: Living with Frontotemporal Disease and on the pages of this website, you can learn more about this disease, its impact, and sources of hope for victims and their families. Although there are hundreds of thousands FTD victims in the United States alone, they tend to live in different areas and have limited opportunities to share with other FTD victims. One resource that’s helped many people – victims and caregivers alike – is an online forum with over 3,800 members: FTDSupportForum.com. The following quotes from Forum participants offer a glimpse into life with FTD:

“Most of us probably started out going to our primary care physicians looking for guidance and diagnosis. In our particular case, all the symptoms I presented were brushed off as “nothing” especially with my husband sitting next to me denying everything. After finally dragging my husband to the neurologist and ultimately having to diagnose him myself (thanks to the internet) I went back to the PCP and told her that we were dealing with FTD. She had never heard of it before. We’ll it’s no wonder patients are not getting diagnosed when the doctors are ignorant to the fact that the disease exists.” ~ Earthgirl

“The biggest thing for us has been the part about our LO [Loved One] not knowing he is sick. Because he started with this while still in his 40’s…that made everything about him thinking it was someone else harder. Having three children at home and being right smack in the middle of the wage earning…Plus, the denial of the LO spreads easily to others when the LO is young. And that can devastate the immediate family. If you pretend the problems with behavior and insight are not there – you create a nightmare of danger and liability. (drinking and driving come to mind. Trying to continue working, giving away money, signing contracts, participating in dangerous sports….) Not to mention the tens of thousands of dollars spent on tests etc…to prove he was not sick. That is my wish (to see in the film).” ~ LynnB

“More recently when everyone is saying that I look so good, I say ‘that is the curse of this disease!'” ~ Susan

“Sometimes I just don’t want to look back because it forces me to look forward and that’s a place I don’t want to go.”
“I hadn’t thought about a year ago in quite a while but it is amazing the differences a year makes.”
“I’m especially concerned because my hb’s [husband’s] long term memory is on quick decline as well as his sensory perception (heat, pain, taste) – often feels like we are moving out and beyond the frontal lobe.”
“It’s a horrible, heartbreaking, cruel journey. It’s just so hard watching it happen each day.” ~ Gailm

“It happened to me 3 times. In each case, it happened when I was supposed to be in a room and I was not there. My wife came to look for me and I was not there. Then she started to look for me. When she found me, she told me that she was looking for her hb. I was telling her – I am your hb. She was saying no you are not, and kept looking for a job. I had to go back to where I was supposed to be and wait for her to come back to the room. Then she was saying, ha there you are – I was looking for you. It seems that when stressed out, her brain was stopping to function properly. Since that time, I never leave my wife alone, and it has not reocurred. It is indeed a very strange sickness.” ~ Alphi

“It is a shock to me every time I see my mom now. I watch her as she sleeps in the chair with her head down and I remember what she used to be like and what she used to look like. I don’t want to have these memories. But, it is getting harder and harder to remember her when she was well. Maybe that is why my brother doesn’t want to visit her. I tell him how she is and what she does, but seeing it firsthand is quite different. She is totally mute, her walking abilities are almost gone, she is completely incontinent, yet she is eating like crazy. She doesn’t seem to get enough food. And, she is swallowing with no problem. Each week, I expect to see that disappear. And, then, it will be the end. My mom would not want to be living like this.” ~ Ellenrdgrs