* I run a private FTD Patient Support Group on Facebook. The groups for FTD Patients Only and is open to those with a firm FTD diagnosis. The support group is a place where those with FTD can gather in a positive environment and realize there not alone. It's also a source of accurate information which is rare in the quick changing world of FTD. The director of AFTD, Sharon Denny is a permanent guest member. AFTD has been kind enough to open up there medical board to answer member questions. Please email me at howardglickftd@gmail.com to join.
HowardWell, moving again. Been in Arizona 2 years and this is my third move. No matter what can't do this again. I'm finished. My life is a cacophony of bad judgement. Just never really know what I'm doing. My thinking and behavior is always off. Through out all my picture books and family pics when I moved from NYC. Through out the family old reel films.........
This isn't why I'm writing now. I'm writing about Kiwi Black Shoe Polish. I just threw out my tin of shoe polish. This is huge, this is defeat. Been about 10 years now since I worked. Really don't have a clue to years exactly. I loved working and had the best job in the world. Flying 120 flights a year everywhere, 200+ nights in hotels. Managing sales forces and companies. Yes, it took it's toll on family, but this was my career for 18 years and I loved it. Every night, I would pull out my tin of Kiwi shoe polish and put a heavy layer on my Allen Edmonds shoes. Every night. Loved the smell of shoe polish at night. "It smelled like Victory." (lol) In the morning I would use the hotel shoe polishing mitt and polished my shoes to a high shine. Every morning. Boom, then off to intense an schedule. I loved it.
Ten years of losing me. Misdiagnosis and maltreatment from the medical community. Pills, electric shocks, surgical experimental implants, suicide attempt with 4 days in a coma, 7 weeks in a psych. ward leading to an FTD diagnosis. FTD, the ultimate mind fuck and killer of innocents and there families. I took my work ethic and found a new job of FTD advocacy and awareness. Think I've done some good and my kids are now proud of me instead of thinking I'm just a nut. Moved from Seattle to NYC to my 3rd move in two years in Arizona. Every move I run into the tin of Kiwi black shoe polish and I would pack it. Why, because I'll be going back to work. I feel fine a good deal of the time. The dream that was, is no more. I threw it flippantly in the garbage this morning without a second thought. Then the smell haunted me all day today. The Howard Glick that was, is gone. Every day I wish for death. I can't even think of how to describe the smorgasbord of symptoms which I and others with FTD go through.
I'm proud of some of some of my FTD advocacy accomplishments. Last week was FTD Awareness Week. A special kickoff evening was at the new WTC in NYC. How I yearned to be at that evening and be part of the FTD family. How I yearned to be back in NYC with my life long friends who put up with me. Here in Arizona, I'm a horse with no name. Actually horses are treated decently. Broken leg and there put out of there misery. If I was a horse I'd be Ikea meatballs by now. Packing was tough. Really have no one in Arizona, but no where else to go. FTD isn't a people friendly disease. People don't want to be around us and we don't want to be around them. The only people we get along with are others with FTD. We "get" each other.
AFTD placed this ad in the Sunday NY Times:
I looked at the guy on the bench and started crying. Realized it was me. Not just in being so alone, but in losing so much of my humanity.
AFTD put together a short video for the WTC evening of FTD'ers and there accomplishments. I'm honored to know these people from the FTD Patient Support Group I created. These are the finest people in the world who fight not only to live, but to help others. I saw the picture of myself with my great FTD'er friend Gary Walters. At first I was upset. There was nothing about anything I've done with FTD advocacy. The selfish Howard popped up. The caption discussed how Gary and I met online, got close and have been friends ever since. Gary is from BC, Canada so we see each other at AFTD conferences and other occasions. In fact, I just realized the only time I've been away from Arizona in the last 1-2 years was when Gary's family invited me to outings or the AFTD conference.
Gary's an incredible man who used to own car dealerships. Now, sentenced with FTD he started advocacy for Native Indians in Canada. He made such a difference in lives he was awarded an Eagle Feather, the highest honor bestowed on someone by the Indian nation. In America, the equivalent would be the Congressional Medal of Honor. I realized how honored I've been to be with my friend Gary in the AFTD video. In fact, most of the FTD'ers in the video know each and have met at the AFTD conference that's held once a year. Many are in contact online and most of us have developed a strong bond. We are all so alone, so lost while we're losing our minds, bodies and humanity. Yet, all are fighting on to make a difference. I miss smelling Kiwi black shoe polish, but I've a different life and path that's taken me to a place I never could've imagined. Yes, us living with FTD that have awareness are a minority with a huge responsibility. This minority has a voice and we speak for all with FTD. From those unaware to those that can no longer communicate.
AFTD-Voices of FTD
Thank you to those that have sent me letters, gift cards,, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone with no caregiver. I'm not starving, but am in the minus everything month. For those that want to help there is a yellow donation button on right top of the page or my address below with gift cards, checks or cash. All help is deeply appreciated and will go to medications first:
Howard Glick
3620 N 6th Ave. apt 115
Phoenix, AZ 85013
