Well I’m back at McBucks ‘181’. I was contacted by some of the other dissidents and we agreed to have ‘reunion Tuesdays’. I missed the staff of McBucks and the cast of characters that hangs out there. It’ll be nice to see everyone for a couple of hours before my support group, ‘Memory Club”.
It’s always talked about how people suffering from FTD are apathetic or non-caring because of brain damaged sustained. It’s true and is one of the symptoms I’m constantly fighting. It’s organic, so I don’t know how long and how successful I’ll be fighting to care.
Alzheimer’s and FTD patients suffer that same eerie feeling of normalcy; yet knowing we’re off. If you’re familiar with peoples in FTD world, you constantly hear us say, “we’re fine and nothings wrong ”. We know our thought process is off, but can’t tell exactly what because we feel fine. When you have a cold you feel the symptoms. Running nose, fever, sneezing and a cough.
With Alzheimer’s, patients realize there’s something wrong with there memory. With FTD, many of us realize our thought process is awry and behavior is off. Take that and combine it with apathy and you couldn’t find a better combination on any Chinese menu. What it means is we do what we feel like doing, say what we want and couldn’t care less about the ramifications. Each person with FTD is a totally different case. Some get aggressive or violent. Others just say or do irrational or goofy things. Medications are usually necessary sooner or later to help manage the symptoms and try and maintain a sense of baance. All of us are stuck in this weird parallel universe. There’s nothing like being aware you’re out of control, yet helpless to do anything about it. Most aren't even aware at all that there's anything wrong, but some of us are aware that we're not aware.
Our thinking is off and we become apathetic. What a combination. How do I handle being apathetic? I bust my butt, like with everything else. Sometimes I’m successful and sometimes I’m not. It would be very easy to talk about myself and not think about or care for anyone else. If you ask anyone who knows me, they would tell at times it’s all about Howard.
Even though the world now revolves only around me; I do have a need to be a part of it. There are people I love and I don’t want to be more isolated than I am or hurt them. While in a conversation I really need to put a lot of energy in making sure it goes both ways. I now fight myself in every conversation to ask about the other person and to have the conversation go to both ways. Even if I'm engaged in a conversation of little or no interest to me, I still fight and make it a habit of forcing myself to care.
I actually do care, but have to force myself to care and show it. Each time I send an email of text, I force myself to go over it before I send it to make sure I ask about the other person or answer that person’s questions. When I’m with someone I know, I’m acutely aware and constantly reminding myself to ask about them. The longer the conversation, the more apt I am to start losing interest in them or the conversation. It’s exhausting trying to keep engaged.
When in a conversation with someone I don’t know or aren’t interested in, I can blow them off in a heartbeat and couldn’t care less. Rudeness or inappropriate remarks are sometimes realized later if at all.
I’m Seattle bound June 16th-22nd for my daughters HS graduation. Haven’t seen my kids for a while and can’t wait. I deeply appreciate the generosity of my good friend Tamara and my mother that is enabling me to go on this trip.
While in Seattle I will have some free time so if there’s anyone out there that knows me from my blog and would like to get together for coffee or a bite, let me know. It would be fun. firstname.lastname@example.org
Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/