Wednesday, December 4, 2013

FTD and Inappropriate Behavior

 “Vote for FTD/Dementia Support Blog in Healthline’s Best Blog Contest.  Find my blog on page 9 of the Alphabetical list:

Contest (click) - Please Vote and help FTD Awareness!!! 
You can vote Once a day. Please vote each time you visit this blog.

* I run a private FTD Patient Support Group on Facebook. It 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 to join.

A few days ago I was at my original Starbucks and was hanging around with some of my cronies. One guy out of the blue told me he's read my blog. Declared I'm high functioning, he knows dementia and I'm not a fair representative. His manner was rude and challenging. I didn't bite. Been there, seen this movie before. I looked at him and the theme from the movie "Deliverance" popped into my head. He could've starred in the movie the way he kept himself. This is something everyone in the FTD world is familiar with. Yes, I consider myself high functioning, but have FTD and I'm going through the dementing process. Yes, I'm slowly losing my mind. Things are constantly getting more difficult and they will never get easier. There's many reasons many with FTD isolate themselves and stay away from people.  It's hard to convey the hurt people with FTD go through when treated this way. You get treated like a child by family, many friends disappear or don't know how to deal with you. Everyone with Dementia has heard, "Oh yea, I forget things to. Ha ha. I must have Dementia to." There's no words to describe the incredible frustration and hurt these words cause to all that suffer dementia. We usually just stand there grinning sheepishly. What else can we do. People just don't get what it's like to be functional and then start losing your mind. There are no meds, there is no reversing it. One way trip baby. To be fair, the people that say, "I forgot that, therefore I……... are well intentioned. There just not sure what to say. If your reading this, I'm making you aware. Don't say it, it's inappropriate and hurts anyone with any type of dementia. 

Spoke with one of my NYC doc friends who quickly nicknamed him Swamp Guy after I described him. I laughed, that's him. 

I went silent after Swamp Guy said that to me. Though his dress and mannerisms are consistent of someone who lives in a swamp, by profession he is a nurse. I had a bit of  PTSD. Memories flooded of a visiting nurse back in NYC. I was freshly diagnosed and had a home nurse visit. The nurse had a translator. She had a strong foreign accent and the translator was to translate her language into Spanish for other clients. The nurse spoke broken english. I tried to explain FTD to her for the longest time. Like 98% of the people in the medical community, she'd never heard of FTD. She looked at me and said, "I smart, I masters ". Guess she was trying to tell me she was well educated. Okay, whatever. She then went on, "I know Dementia, you no Dementia".  The translator looked horrified how Idiot Nurse was talking to me. I was speaking slowly and really trying to explain. Enough, I stood and told both Idiot Nurse and translator to pick up there shit and get the fuck out of my apartment. I was yelling at Idiot Nurse the whole way out the door. Like all professions you've fools who've limited knowledge. I commend Swamp Guy on the profession he haas chosen, unfortunately, having a bit of knowledge does not entitle you to be an ignorant rude fool going through life like the Tin Man before he received his brains. The way Swamp Guy carries himself and acts, he's an absolute disgrace to the medical community for which I've much respect. Swamp guy, If your reading this I've always liked you. Still like you with your inappropriate behavior and by the way, Fuck You!

I do need to thank Swamp Guy. Looking at him, made me want to look good. Having lost 43 pounds I now fit into my old wardrobe of nice shirts and clothing. I'm now putting on nice clothes each day as part of my routine. I'm going to continue to control what I can for as long as I can and bust my butt to live a happy, purposeful life. Thanks to Swamp Guy I'm looking good. So, thank you Swamp Guy and by the way, Fuck You!  

Today is a milestone. First time since I've moved to Arizona I've broken my routine and not gone to Starbucks by my apt. 7 days a week, every week. Haven't missed a day missed. Have been stifled by unproductively as of late and needed to make a change. Living successfully with FTD/Dementia for as long as you can is routine, exercise, minimal stress and lady luck on progression. I do everything I can to stack the odds in my favor and stick to my routine. My favorite place on the planet is Sedona, AZ a short distance, yet I've yet to break my routine and leave the Phoenix area or my morning routine Starbucks. A simple change can throw someone with dementia for a loop. Two weeks ago I arrived around 6am at Starbucks to find it redecorated. All the chairs and furniture were moved around to accommodate there Christmas sales of additional retail products. Spoke to the manager who assured me they will change it back after New Years. I've been struggling where to sit ever since. I feel like I'm playing musical chairs with a blindfold on. The music goes off and I can't see where the chairs are. So I sort of hang around aimlessly moving from one chair to another. Enough is enough. Have been uncomfortable and unproductive for weeks now. Routine needed to be changed and behavior modified. Normal logic dictates it's no big deal, just go somewhere else. For someone with dementia, anxiety creeps up with uncertainty. I'm now at a different location. May not seem like a big deal, but for someone trying to keep Humpty Dumpty together with elmer's glue, it is. Guess I'll see how it goes.

 “Vote for FTD/Dementia Support Blog in Healthline’s Best Blog Contest.  Find my blog on page 9 of the alphabetical list:

Contest (click) PAGE 9 - Please vote and help FTD Awareness!!!

You can vote Once a day. Please vote each time you visit this blog.

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. For those that want to help there is a yellow donation button on top of the page or my address below with gift cards, checks or cash. Got my kids tickets to visit me but could use some help so I can do things with them while there here. All help is deeply appreciated:

Howard Glick
7791 East Osborn Rd. apt. 170E
Scottsdale, AZ 85251