This is a support blog for people that have been diagnosed with early stage FTD/dementia. This blog is dedicated to helping people help themselves as well as increase awareness for caregivers, friends, and the medical community. It will include finding groups, medical care, public assistance, having fun again, making new friends, dealing with old friends, family, depression, and isolation.
Dementia is a lifestyle change. You can live a happy, productive life with dementia.
Friday, January 13, 2012
Documentary and Life Update
I just want to say I'm thrilled with how the Facebook FTD Patient Support Group is working out. It now has 30 members and is always active. I'm starting a live chat schedule next week, but the members beat me to it and have already started using the chat feature.
If there is someone new needing instructions to join the invitation only group please scroll down couple of articles to the one called, "FTD Patient Support Group" or email me at firstname.lastname@example.org
The filming is going well with an estimated 60-70 hours shot. The filmmaker, Joe Becker of Thinkfilm Inc. has experience shooting people with FTD. Joe made the successful FTD short film, "It is What it is". That film shows four families and discusses what FTD does to families. It is gut wrenching. Joe is a seasoned filmmaker whose credits include the TV hit show "West Wing".
Joe Becker sees my whole world.
The film being made about me has a yet to be revealed name and will be a full length documentary. There is now interest from a major studio who contacted Joe about wanting to see footage and have a meeting to discuss a full length film. So far people that have seen parts have said the film takes you from laughing out loud to tears running down your face. I've been told because I have no inhibitions (FTD) I'm great to film. I'll say anything at anytime to anyone. If I didn't live in New York I'd be in jail, institution or drugged up like most other FTD'ers. I'm totally honest and have zero tolerance for BS. I'll say what's on my mind which either has people around me hysterically laughing or chasing me down the block wanting to kill me. I never ever get into physical attractions, but am constantly saying or doing inappropriate things and need to talk myself out of situations. I say hurtful things unintentionally and can reel for up to days after when I realize how much I hurt someone.
Joe sees me crying in the middle of the night worrying about being on the streets because I don't have enough money to sustain myself. He hears how I'm slowly get squeezed and choked by society. How my social worker promised me a rent freeze because of my terminal illness only two have my application denied, then the appeal rejected and finally a lawyer from NYC telling me I'd be getting more help if I was a substance abuser or alcoholic. Joe has been with me through my frustration of how my food stamps went from $2.03 a day to $1.45.
Finally a couple of weeks ago on my birthday December 24th I received a letter from NYC stating my food stamps are now reduced to $0.63 a day. I can appeal it by a sending in paperwork and then go to a hearing in Brooklyn.
Joe also follows my triumphs how my blog has received international attention, how I've helped others with dementia in my community and am receiving media attention for projects I've created. Of course the film covers the horror history of me being misdiagnosed for 6+ years. FTD taking from me just about everything life has to offer.
I'm not sure if the film will be a triumphant story of me facing life with FTD and overcoming obstacles or end in tragedy.
I just heard from my lawyer that my private Long Term Disability insurance company has refused to reinstate my disability. Dementia and FTD is covered.
This is a huge blow to me.The stress on me now is unimaginable. I will write about this after I meet with my lawyer next week.