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:


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* 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 howardglickftd@gmail.com to join.
Howard

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

10 comments:

  1. I LOVED this blog Howard! You did such a justice for all of us, thank you! I most especially liked the line " 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." Excellent and awesome! You got a huge LOL out of me...thank you for making my day!

    We are all high functioning for a good amount of time with this disease. That's why we are so "aware that we're not aware", and are very much aware of our progression and everything that is happening to us (that's the sucky part). I think that's also a big difference between FTD and a lot of other dementias.

    Keep on keeping on. You have such determination and a lust for life that keeps you going. You look great, you sound great, and you're doing great things for yourself! I am so happy for you and all the good things this move has done for you! ♡

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  2. Hi Sheryl,
    Thanks for the feedback. It's deeply appreciated. Never really sure how I'm doing. Just keep going.
    Howard

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  3. I dont have this disability but my husband does and this has helped me understand why he likes to go to the same places to eat and doesn't want to try new places.

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  4. GREAT advice Howard. Pretty sure I've probably made my Mom feel like crap with a comment about how forgetful I am too. Youre right, I just wanted to make her feel more "normal", not alone, etc. I always learn something from your blog! Keep up the great work you do!
    Heather

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  5. Hi again, Howard

    Just finished your latest blog about Swamp man and your adventures in sunny Arizona. I can so relate to your feelings of frustration in dealing with non FTD'ers and their comments, whether well intentioned or not. I too feel that I function at a higher level than the other residents of the day care center where I have been sent by my well meaning wife. The people here have various levels of Alzheimer's and dementia and as such I try to stay away from them as much as possible. I feel that the staff believe that I am anti-social; I'm not really, I'm just uncomfortable with people suffering with this affliction. Plus, I always have been a bit on the shy side. As they are now so I will be.

    I can relate to your feelings about gaining weight and I too am fighting the battle. Right now I'm 265 pounds would like to get down to about 200. Trouble is I like to eat and I don't have much self-control. Does that get better?

    At the adult day care center they recently redecorated for Christmas and moved my favorite chair. I know I shouldn't be upset about this but I am and I can't help it. Also I'm becoming a bit of a curmudgeon if my routine is disrupted. On Sunday evenings I like to watch 60 Minutes, The Amazing Race, The Good Wife, and The Mentalist. I've never been a rabid sports fan and cannot understand why the Sunday football games cannot end at a reasonable time so that my programs are not delayed by as much as an hour or more.

    I also have a companion who is supposed to take me shopping and so forth. When we're in the stores he stands so close to me that I think his nose is going to go up my ass. Trust me I won't fall!

    Well my (short) bus is here so I guess I'll close for now.

    Enjoy the holidays!

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  6. Hi Howard!

    This is a great post.

    Oh, the pain it causes me when people say things like Swamp Guy. :-( It is a terrible thing to say to anyone with dementia, or one of their loved ones. I think, for me, it hurts so dreadfully because it took me about 10 years to realize that my husband was suffering from some form of slow wasting disease. :-( Those 10 years were absolute hell. We stumbled confused, trying to understand what was happening to him, and trying to figure out what we should do for the best. We must have visited every single explanation for weird behaviour that there is on the planet before finding ourselves at the neurologist's office.

    And finding out that a loved one has some form of early onset dementia is just the worst thing. It is a terrible, hopeless, heart-breaking diagnosis that destroys families completely - and as an added little bonus, it is a nightmare to deal with in every possible way. You constantly wish that it was something else - anything else - ANYTHING! On good days, you wonder if perhaps the diagnosis could be wrong - but then you stumble across a picture, or a piece of writing your loved one did months or years back, and you realize how much their personality has changed and deteriorated, and the black hopelessness sinks down over you again. :-(

    And while you are dealing with all this - loss of income, genetic testing, loss of lifestyle, friendships, career, shared memories, interests, skills - often while having to face disability discrimination in all its wonderful forms, some disrespectful *!*&^%* walks up to you and says "Oh, I forget things all the time too! Hee hee!" or "He doesn't seem too bad to me.." or "My granny had dementia - it doesn't look like that - are you SURE that's what it is??" :-(

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  7. Remember, these people (usually) see it as a compliment. They have an idea of what a dementia patient looks like, and it's not you -- you drive, you write, etc. I understand your frustration, and when people question your diagnosis for other reasons (family members who think you're making it up etc) you have my permission to exhibit some inappropriate FTD behavior to make sure that they don't do it again. But other than that, just smile and thank them for saying that you don't look so bad for someone with holes in your brain. That should usually shut them up.

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  8. Howard-
    Last month my general neurologist displayed the exact behavior of Swamp Guy to me. I tried to explain to him more about FTD but he "didn't have Time!". Fortunately I have an outstanding cognitive neurologist and neuro psychologist who get it. They make my disease real and continue to be pleased that I am functioning as well as I am. As for my Swamp doctor-I am just not going to see him anymore but I will drop off some materials from AFTD as his holiday present!!

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  9. Howard,
    Many people diagnosed with FTD have the same experience as you have. We don't 'look' or 'act' like what they think we should with that diagnosis. My children don't think I have it, either. Actually, I think it's because most people aren't around us enough to notice our symptoms. I do believe that sometimes when they talk about how forgetful they are, they are trying to make us feel better. I think there's also a mis-conception that FTDer's don't know when they are exhibiting the symptoms, which many of us do know. I recently had a psychological evaluation, and once again was told that I don't have FTD or any kind of dementia. My diagnosis was in 2007 by PET scan & MRI, showing moderate atrophy.
    I'm glad you're happy in your new home,
    Sharon
    http://aquawingsplace.blogspot.com/

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  10. Good post! Thanks for sharing this information I appreciate it. God bless!

    Dementia Care Baltimore

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