Friday, April 4, 2014

FTD and Swiss Cheese Memory

Received an email a few weeks ago from an old work buddy. He Googled me and tracked me down through my blog etc. Haven't spoken to Dave in about 10 years. We we're very close. I sort of just disappeared off the map at work. Never knew what hit me.  I was out on disability and Tamara used to give me messages that Dave and others used to call. I never called anyone back. Besides being in the beginning stages of FTD, I was also drugged up out of my mind for the 6 six years being misdiagnosed as bipolar. A SPECT scan, which is less definitive than a PET scan showed FTD 2006.  It was normal  but showed reduced truer amounts in the anterior temporal and frontal lobes. Due to lack of FTD awareness it wasn't followed up upon until 2010, when a PET scan clearly revealed progression and FTD. Lack of awareness which caused me to lose years of my life in a medically induced fog and lose my work long term disability, because Unum decided they could get out on a legal technicality. I'm hoping this blog is increasing awareness which will lead to a quicker diagnosis of others.

Dave called me and we caught up. It was great hearing from him and I was glad he was working with the same company in Seattle Wittco. Another old buddy Sean was still there and it was good to hear they were still working for Bill Witt. Bill Witt was an astute, savvy businessman, politician and very fair to his workers. I remember battling him back in the day, but don't remember exactly what. I wasn't surprised at all that the same crew was together.

Mid-conversation Dave brought up how we shared Seattle Seahawks season tickets back in the day. We discussed the Seahawks a bit. I was a bit shocked because I didn't remember having tickets with him. In fact, I didn't even remember going to a football game with Dave or anyone else. I didn't mention to Dave I didn't remember. It shocked me I didn't remember and it's so hard to say, "Hey, I don't remember that or I'm not following you." Many of us with FTD just keep going when we run into situations like this. I did speak to my daughter Chelsea later that day and she told me I used to take her to football, baseball and basketball games when she was a kid. Don't remember a single time. Living with FTD is a hell of a thing.

When you have FTD, alzheimer's or dementia, many try to make you feel comfortable or make light of it by saying, "I forgot my keys this morning, I must have dementia to. ha, ha" Fuck you, you don't have FTD/dementia and you have no idea how hurtful that is and how you make that person want to isolate themselves. You don't go up to a person with cancer and say, "I've a new zit on my face, so I might have cancer to, ha, ha." Of course there's a big difference. Many cancers are curable, FTD is not. FTD is incurable, untreatable and unstoppable. I've had both and neither are fun.

Whether it's memory or not following the conversation, you keep going. A couple of weeks ago I was on a 3 person panel in front of 250 people answering questions at the AFTD Conference. By the time the others answered the questions, I didn't have a clue what the original question was. I just sort of improvised or bullshitized my way through. Not sure if it was apparent or not. Really couldn't care less. Think I had something meaningful to say, even if it had nothing to do with the question. I wasn't trying to deceive anyone, but it's not easy losing your mind. You just get through the best you can and keep trying to survive. Many write to me saying there loved ones just look at them silently or say yes or no when asked a question. The caregiver feels there playing games or being deceptive. No, this is the furthest thing from what's happening. What's happening is the FTD'er is not following your question or the conversation. There not ignoring you or playing a game. They simply aren't' following what your saying. You need to have patience and understanding. 

We are sick and sometimes there's nothing you can do but have kindness and understanding. Family members and friends need to understand and give some leeway to those with FTD or dementia. We just can't stop and say, "I'm not following you" all the time. At a party or with a group of people, I can easily get lost. overstimulated and overwhelmed. With FTD, memory is supposed to be the last thing to go, but from what I hear there are many in my patient support group and out there like me with swiss cheese memories. Not Alzheimers type memory loss, but years that are dropped out. I've realized years ago that I don't remember my children being born or where they were born. I know, because I've been told, but no memories of those years exist. It is what it is, but you just keep on keeping on. The other night I went to shut off my cell phone and I forgot how. Sort of shook my head, smiled and thought, "Well this is a new one."



Thunder, rainbow, nuclear bomb and sandstorm the other day from my balcony

Was talking to my girlfriend the other night and was telling her that I realized that I don't remember working with Dave or being with him at. I remember Dave, Sean and Bill. Remember Bill's wife Gail who was also a  lawyer. I can envision them and remember them perfectly. Just don't have memories. The more I think about periods and people in my life, the more I realize how much of my memory is gone.

Dave told me I sounded great on the phone. Told him that was one of the curses of FTD. Right now I can sit with anyone short term and they wouldn't have any idea I'm sick. usually doesn't take long for a head turning moment though. I receive communications every day from FTD patients and caregivers that are going through hell. Relatives, friends and doctors don't believe there anything wrong with the person sick with FTD. FTD is still a insidious, unknown disease that causes a smorgasbord of symptoms. To live through this revolving door of symptoms is pure hell.

My memories of my 17 year career starting in NY and ending in Seattle are just faces and scattered names. Don't remember many faces, names or events. I remember major accomplishments or have memories of memories, but don't remember the actual events. I moved from NYC 6 months ago and my memories from there are now getting to be far and few between. My memory issues can be a combination of being on up to 17 pills a day for 6+ years, about 100 ECT's (electric shocks) and of course FTD.

To end on something fun,  I wrote in my last blog about one of my docs, Dr. Laurie Mullen who is a good friend of mine and came to visit me to make sure I was doing okay back in NYC. Laurie checked out my refrigerator to see if I had food and then checked out the freezer. In the freezer she found a hardcover book and started laughing. She took the following picture and wouldn't let me remove the book from the freezer. FTD - sometimes you just have to laugh.



* 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.
Howard

Thank you to those that have sent me letters, gift cards, Starbucks, cash etc. They are deeply appreciated. I've dedicated my life to FTD awareness and advocacy. I live alone modestly with no caregiver. 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. All help is deeply appreciated:

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

8 comments:

  1. Replies
    1. Thank you very much Crystol.
      Howard

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  2. Howard, your comments about withdrawing from conversations rang so true with me. My husband got to the point where at family dinners or gatherings he would just sit quietly in his chair, let me order his food and just 'observe' the goings-on. this was so unlike him. he was always the loudest, 'life and soul of the party' person before FTD. It was only in larger groups that he did this and later he became quite combative - frustration I guess.
    I admire you for the fact that you were able to stand up at the Conference and speak in public, despite your difficulties. I also admire your tenacity and strength which is evident in your writing.
    Thank you for sharing your journey.......

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  3. I have a certain relative who will misplace something and then laugh about it being Alzheimer's. It was damn annoying to listen to her joke about something so serious even before my Mom developed FTD. Now I just want to strangle her. Thanks for venting for me.

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    Replies
    1. My pleasure A,
      Send her the article. Then strangle her :-)
      Howard

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  4. Hi Howard,

    I was diagnosed with FTD last year. I guess I'm part of that minority that is aware I'm unaware. I tell my wife who has miraculously stayed with me that it's like catching a falling knife. This post really struck a cord as have others you've written. I used to say that I felt trapped in another man's body. Now I describe it as having details of another man's life but not having lived it. Very strange.

    I wondered, do you have headaches? I have monster headaches at times. Often during the night, in the early morning and early evening. Just curious. Also, I appreciate your comments about overstimulation. Whenever I've mentioned this tendency to the various doctors they seem to be oblivious about any connection. Unexpected noise being the hardest to deal with without going ape shit.

    Thanks.

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    Replies
    1. Hey A,
      Got your email, just so hard to get shit done. Will be writing to you. just exhausted now.
      Howard

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  5. Hi A,
    Yes, i have headaches as do most with FTD. FTD is rare and I've learned that even the experts on FTD are in many respects novices. We as the sick public are looking at them for all the answers like there Gods. There not, there just doing the best they can with the information they have. Unexpected noises rile us also. A friend of mine undergoing testing at UCSF had one test where they fired a gunshot nose behind her head to see her reaction. Nice….. I don't take meds or go to docs. Have been tested up the wazoo and now I'm going to enjoy by my lonesome and girlfriend once a week.

    If you'd like to join The FTD Patient Support Group with other's like you and me with awareness. The group is closed and secret. No caregivers or anyone allowed in except those with Firm FTD diagnosis's. Contact me at howardjglick@gmail.com. You'll find out you've plenty of crazy FTD'er company with awareness. Us FTD minority members need to stick together.
    Howard

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