Was There a Compliment in There?

A few days ago, I was actually having a good brain day. Plus, my chronic headache was not too bad. It happened on a day that the women's group from my church was meeting. A friend picked me up and took me with her. I even managed to fix a dish for the potluck luncheon.

Many of the women, and one man, who were there seemed happy to see me. Others just ignored me. That's okay because I realize it is because they do not know how to deal with my illness and what to say or not to say.

I was only there about a minute until I got the old standby "You look really good." Nice sentiment for someone who is not dealing with a life threatening illness. It might even have made me feel good if it wasn't said in a way that made it obvious they didn't believe there was anything wrong with me. Some of the really ignorant ones actually say "You look too good to be sick." Gee, thanks?

I actually responded to a few of them that I really appreciated the complement and that since dealing with FTD I have made a concerted effort to pay attention to my appearance. I actually dress nicer, wear makeup and pay attention to what my hair looks like. Before FTD, I was always a take me as I am person. If I wasn't at work you would see me in blue jeans, a shirt and sneakers. I take more care with my appearance, thinking that if I look better maybe they won't notice my symptoms.

When I mentioned that to a few of them, a couple of them said "Well, you must be having a good day." Again, thanks? I did respond to them that I was indeed having a rare good day. I did not tell them that after being there for two hours, I would probably have to go to bed when I got home because it will have taken that much of a toll on me.

They may as well have said that I must not really be sick.

Just as bad are the ones who take a different approach. They start telling me how they totally understand what I am going through because their neighbor's friend's aunt's mother has Alzheimer's too.

First of all, if you don't have FTD, or are not caring for someone who has it, you do not understand what I am going through. Some days, I'm not sure I even know what I am going through. Secondly, I do NOT have Alzheimer's Disease. I do not know how many times I must explain this to the same people over and over. FTD is not the same disease. Yes, they both involve dementia and they are both fatal, but there are many more ways they are different than those that are the same.

I wish people who know me well enough to know that I have FTD would actually care enough to go home and look it up on the internet. Then, they might have a small inkling of what I am dealing with every day.

Bottom line is that these are examples of the things you should never say to someone with FTD. Do not deny that I have an illness and do not delude yourself into thinking you understand what I deal with day in and day out. It is just downright rude and uncaring.

I cannot stop myself from worrying about what the people I encounter think of me when I am showing symptoms. That, however, is much better than someone implying that there is nothing wrong with me or trying to make me "feel better" by telling me how wonderful I look. The truth is that compared to how I looked pre-FTD, I look pretty bad. My face is always drawn and tired-looking. I walk with a strange gait, sometimes even with my cane. I have lost most of the confidence in myself which was always apparent to others. I don't look "good." Some days, I look better than others, but I would never classify it as looking good.

I would suggest that people say something like "You look nice today." or "You look good in that color." It just needs to be something truthful. If it is not, sorry to say but I will see right through it.

Positive People

Last week, I wrote about a wonderful friend. Last evening, she escorted me to a charity benefit that I attend every year. We sat at a table of people whom I know and several others that I know were nearby. Then, my friend noticed someone at the next table who we had both known several years ago. My stepfather never sat down, but he was right there next to our table almost the entire evening. My sister and her significant other stopped by as well.

I should have prefaced all this by saying that this annual event has been quite boring to me and always seemed too long and drawn out. This year, though, while still just as long, I had a blast! Last night, as I was trying to unwind enough to go to sleep, I started wondering what made the difference. It didn't take me long to figure out what it was... positive people.

I had asked a cousin to save us seats. She had no idea what an impact crowds and crowded places does to me. Yet, by coincidence, or mental telepathy or whatever, she had reserved a table in a room adjacent to the main room for the event. This resulted in us having lots of open space around us and even a couple empty seats at our table. Plus, the rest of the table was filled with family who know how to have a good time. This, more than likely, also contributed to my being relaxed and able to have a good time. There actually was one grump at our table, but he was at the opposite end of the table so he didn't interfere with me. There is always one, isn't there. I figure he is related somehow, but never did figure out who he was!

There were a few comments about things dragging out, but other than that, everyone was upbeat and fun to be with. Another contributing factor was probably the fact that they all knew that I have FTD and didn't react when I stuttered or stumbled. They might have had a couple chuckles after I  left, but that's fine with me because I laugh at myself some days too!

My friend always knows someone, no matter where we go. I had not seen our old friend for five years and because of circumstances in her life, it happened abruptly. I shouldn't call her "old" she is way younger than my friend and me. Now, I have a luncheon to look forward to us since we made plans to get together, the three of us and one of her friends.

These things don't happen when I am surrounded by "Negative Nellies," people who complain all the time and have grumpy faces.  Surrounding myself with positive people is definitely something I should consciously do. The difference is just amazing. FTD tends to be a depressing illness. It is so very frustrating and gets more and more so as it progresses. It steals from you the things you used to be able to do without even thinking about it. I cannot begin to explain what impact that has on my life. Being with positive people rubs off on me to the point that I cannot have a bad time. When having fun, the frustrating things don't seem to matter as much. I can enjoy myself!

Post FTD, I have not gone out in the evening very often because by then, the daily frustrations have become to much and I need to retreat to a calm and quiet place. So it was truly amazing that I was able to be relaxed enough to enjoy myself.

One amusing thing that happened last night is that I won a raffle prize. I have been attending this event for about ten years and have never won a darned thing. See how much better things are when you are having fun? Yes, I know it had no effect. My sister also claimed that she had blessed my tickets and that is why I won. Uh, no to that one too!

Precious Friends

I have written many times about friendship. Specifically, I have written about how difficult it is for even longtime friends to stick with someone with FTD. It is easy to be a friend when things are good but not so easy when times get tough. How often do you hear "You find out who your friends are." Come to think of it, isn't that even a song?

Notice I said how difficult it is for the friends, not how horrible it is of them. I have/had longtime friends where we have been there for each other through good times, sad times, fun times and difficult times. There is only so much support and help that someone with FTD can provide so the friendship seems to one-sided at times. That can be difficult for some people to bear. I don't like it, but I understand and knowing that they feel that way, I have no desire to hang out with them anyway.

The good news is, there are the other kinds of friends as well. Sometimes, these are the ones that have recently come into our lives so they have only known us as we are now. I have a friend like that! We met about 3 or 4 years ago right around the time I was openly explaining FTD to people around me. Jannett and I got along really well at the craft sessions we attended together. Then one day, the person who usually drove me home was not there, so she offered. We didn't stop talking the entire way home, talking at warp speed and sometimes at the same time. We had so much in common it was scary.

Unfortunately, we both stopped going to the meetings right about the same time for different reasons. Neither one of us followed up with each other to keep in touch. Then, six months or so ago, through the miracle of Facebook, we reconnected. She had posted about a business venture she was involved in. She mentioned that she worked there on Fridays, so the next Friday, I conned my husband into taking me there to see her. It was like we had just seen each other the week before. After lots of hugs, we arranged a lunch together.

Jannett amazes me. She is ten years older than I am, yet is one of the most active people I know. The best thing about her is that she accepts me just as I am. She doesn't care if I stutter or search for words or stumble around when walking. If people think I am drunk, eh, who care? She can also get me to do things I wouldn't have done otherwise.

Last week, we again met for lunch at our favorite place. Earlier that morning, I had seen an email that the women's group from the church we both used to attend regularly was going to meet next week. I had not been to a meeting for many months because I no longer felt comfortable there. It seemed that other members were reluctant to include me in conversations, making me feel like a fifth wheel... totally unnecessary. Plus, I have difficulty being with more than a couple people at a time. That morning, though, I thought "Hmmm... if I could talk Jannett into going with me, maybe I will go." At our lunch, some of the first words she spoke were that she had received a phone call from the president of the group to personally invite her to next week's meeting and suggested that maybe she could try to get me to come as well. So there we were, thinking the same thing! Yes, we are going to the meeting.

Jannett is good for me. I have written how difficult it is for me to get out and do things and to spend time with people. She doesn't let me get away with that. I also wanted to go to a function that I would not go to alone. She didn't hesitate to agree to go with me. We will make it fun... and I need more fun in my life. I am thrilled to have her in my life!

Oh look, a squirrel!

There are a lot of strange or funny things about fronto temporal lobe dementia. For instance, I can write this blog. I believe I write it in a straightforward manner with proper grammar and spelling. Spellcheck definitely helps. I also believe I write it in somewhat of an intelligent manner. Take me away from the computer, though, and it is a wholly different matter.

If you and I were speaking about the same subject I write about, I would stutter and struggle for words. I would often use a word of totally different meaning from what I am trying to say. Sometimes I hear myself do it and will question the listener as to what I had actually said. Fortunately, those who are closest to me can usually figure out what I am actually meaning to say. With these people, I can just laugh it off. With people I don't know as well, I am quite embarrassed when I do it. To be more accurate, I am embarrassed by their reaction to me.

Strangers will often think I am under the influence of alcohol or drugs, when I am talking and also when I am walking. It is quite hurtful when they are rude enough to make a comment about it. They don't say it to me, but I overhear them saying it to someone else. Makes me want to hit them with my cane! Not literally, don't be calling the authorities on me. I haven't reached that point yet.

Okay, right here I will admit that when I am writing these blog entries, I wander off subject and weave around right along with my wandering mind.  Yes, I do this in person as well, probably more so than in my writing. It is kind of like talking to someone with a serious case of Attention Deficit Disorder. It is not unusual for me to jump to three or more subjects in one paragraph or even one sentence. The joke about "oh look, a squirrel" distraction to someone with ADD often literally applies to me. We have a lot of squirrels who come up to our patio door. They are so entertaining that I will switch to talking about them a lot of times, especially when on the phone. Where I sit to talk on the phone is right in front of this door and they show up to entertain every time. The worst part of my wandering mind is that when someone doesn't follow along or grasp all the different things I am saying at once, I get very frustrated and angry.

This wandering of the mind is worse on some days than it is on others. I tend to talk over people because I already know what I want to say in response but forget it is polite to wait until they have finished talking. Talking on the phone brings this out even more often for some reason.  Perhaps this is because I hate talking on the phone and want to get it over with. I hate making phone calls even more. I think it is insecurity, thinking that whoever I am calling has more important things to do than to talk to me. These phone issues don't apply with family and close friends, thank goodness. With them, I don't know when to shut up and let the other person talk or when it is time to end the call. Anyone who has known me all my life will tell you that I always talked too much, but it is definitely worse now.

Almost every time, when I am writing a blog entry, I start out on a certain subject. A short way into it, my mind switches to something else and I end up writing about a totally different subject. I hope the first subject wasn't very important.

I also find more humor in things. Unfortunately, it is things that aren't intended to be funny. I also come up with brilliant and hysterical things to share with others. Telling the story ends up with me saying "Well, I thought it was funny!" almost every time. Maybe there aren't as many funny things about FTD after all?