Hi Everyone,
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 howardjglick@me.com
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.
Howard
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.
Howard
I feel shocked and that NYC and Insurer should be disgraced - how can anyone live on 63 cents a day for food and how can an Insurer decide for themselves a diagnosis opposite to the neurologists .... Does Barack Obama know about this .... surely this does not 'fit' his policies ...... maybe I'm mistaken in that.
ReplyDeleteThis situation is an outrage.
Thank you f. My friends help me, so I want for absolutely nothing right now. Unum has reputation for doing this to people. You need a lawyer to fight for what you should rightfully be entitled to and paid for.
DeleteWe got $7 a week food stamps in 1972! Disgraceful. That unum insurance ought to be prosecuted for fraud.
ReplyDeleteAnyway, Howard, you can always come live with ME and the creatures...but Y don't think it will be necessary.
Unum has been prosecuted before. They are the largest disability company in the world. 6 billion in business. I'm just someone in the way of there profits. Thanks for the invite to live with you and the creatures, but I enjoy the creature features of NYC.
DeleteH
My mother has had FTD since 2007 but luckily is on Social Security and actually receiving a retirement payout from her old company. She's got enough money saved up in her IRAs and other accounts so that I'm not to worried about her financially; however, this is also only because I've hired private (i.e., cheaper) caregivers to look after her. She can no longer cook, clean, read, write, pay bills, shop, drive or work, and even simple tasks like bathing or getting a glass of water are difficult for her. And yet, just three years ago she was still able to drive and go to work (the IRS has her earnings records going back to 2008). I can't begin to fathom how her descent into FTD has been so drastic and quick, when other victims like yourself can still get around and even blog! I often wonder what the next three years will bring, and just how much care she'll need in the future...
ReplyDeleteI'm glad your mom is taken care of. I got wiped out after being misdiagnosed for 6+ years. I'm unfortunately bankrupt and broke. The good thing is I have the best friends in the world and so far me health is not noticeably slipping.
DeleteI know things can change in a heartbeat but I can't live in fear.
H
My dad has FTD and his decline has also been very drastic over the past 2 years or so, though I am sure he had the disease for years before we got a proper diagnosis. He never had the insight that Howard and others seem to have into their illness or the capability to care about others. Maybe different personalities handle the disease differently? FTD only gets worse so you should be preparing for the future now. In 3 years my Dad went from being able to live at home, though he had to be supervised every minute as he had become a danger to himself and others, to being in a geriatric mental health facility. He doesn't know who we are any more, has become incontinent, has trouble speaking and doesn't make sense when he does speak. He is a constant problem for the staff in the hospital, always tormenting the other patients and trying to get out, though he doesn't ever ask to come home. He wants to get out so he can go and buy a car. He sits there most of the day chewing the skin off his hands and arms ( psoriasis) and they have said that they will have to remove his teeth if he keeps doing it. It is sad and really hard to watch. It can be difficult to find a care facility for someone with FTD because most of them do not have the staff to handle the behavior issues. It would be wise to start looking for a place now and get on some waiting lists. You can always pass if your name comes up and you don't feel your Mom is ready to be there yet. Good luck with it.
ReplyDeleteI'm sorry to hear about your dad. FTD effects each individually differently. It just depends what part of the brain it spreads to. I know the horrors of FTD but try not to live my life in fear. I'm not checking on long term care facilities because I have no money so I'm dedicating my life to helping others while I can.
DeleteThis blog is written solely by me and about my life with FTD. My mom fortunately doesn't have FTD, but has dementia.
H
Sorry Howard I was talking to halina. Love your blog, keep up the good work!
ReplyDelete