It's not been a good week for me, at least FTD-wise. It is common for FTD symptoms to worsen. Sometimes the change happens quickly, sometimes slowly. My speech difficulties seem to occur in spurts. It will plateau, then noticeably worsen then level off again for a while, sometimes even for weeks or a couple months. A week or so ago, it definitely took a step down. I have been stuttering and have been unable to come up with words much more severely than it had been. I eventually get my thoughts out as long as the person I am talking to has enough patience to listen.
Also, this week, I kept experiencing pain in my right hip. The pain was not severe, but it reminded me every so often that it was not happy. I could not remember anything happening that could have caused the pain, nothing at all. Then this morning, I went outside to talk to my friend who had brought some mulch over to spread out for me. The longer I tried to talk to him, my speech got worse and I got more and more angry at FTD. It wasn't long until I stomped my right foot in sheer frustration. This cycle of speech problems and stomping my foot continued the longer we talked. If there ever was an ah-ha moment, this was it. I'll bet my friend even saw the light bulb click on. This was why my hip was hurting. Every time I got frustrated with my worsening speech, I was spreading the irritation straight to the hip! All this without knowing I was doing it.
Even though I am now aware I am doing it, it is not going stop me from stomping that foot. FTD does not allow me to reprogram my brain. In addition, the frustration seems to need to find a way out.
Another incident happened earlier this week. I had a huge meltdown. It totally ruined the day for both my husband/care giver and me. To be honest, I do not even remember at all what triggered it. My husband was there so it was probably me getting frustrated because he was ignoring what I was saying or I felt he was just not listening to me. I must break for a second to tell you something that I find funny.
After several years of many people haranguing him, my husband actually got hearing aids. Some of the amusing things about it is how he keeps turning down the television, complaining that my sneakers are squeaking on the kitchen floor or asking things like "Are the birds always singing so loudly?" Now, I finally have the answer to the claim that men have "selective hearing." He now hears everything... except me talking.
Now, back to my meltdown. My speech problems always escalate when I have become upset or frustrated. Sometimes my balance and walking worsens as well. This day, however, the effects were much more pronounced than usual. I could barely get any words out. I would get stuck on the first syllable of a word for minutes at a time or just was unable to come up with any of the words I needed. That isn't so unusual, but it was much worse than it usually is. In addition, my head kept making small movements, almost as if I were shaking my head "no." Then, my right leg started twitching. The closest I can describe how it felt was that it seems as if electrical pulses were zapping down my leg every minute or two. It frightened me and frightened my husband perhaps even more. It was probably a good thing that I had seated myself before it escalated to the point my leg was involved. Once I calmed down, the symptoms eased. The speech difficulties stayed, but the twitching stopped. I was totally exhausted when the twitching had stopped.
I sure hope that these symptoms do not start becoming regular for me, progressing just like my speech and movement issues have progressed over the past few years. It would be easy to shove the incident aside since it happened when I was having a meltdown. The problem with this is that the meltdowns are caused by FTD. Things, that used to just irritate me a bit, but I was able to accept or ignore them, and they would not become huge issues.
My FTD brain is so occupied with trying to just deal with daily life that there seems to be no leeway on dealing with anything that involves emotions. If we go back to some of the earliest symptoms of FTD, we get "changes in behavior," "showing poor judgement," "no consideration of the feelings of others," and the biggie "no filter between thoughts and speech or impulse control resulting in offending others." Yep, these symptoms were all involved that day. I said whatever thoughts came to me, disregarding whether the words would hurt my husband or not. The more he tried to not react adversely came across in my brain as though he did not care or was not interested in what I had to say. The anger and frustrations just kept feeding off each other, leading to the severe symptoms.
Could I have prevented this from escalating the way it did. The answer is a big, fat, NO! I was not capable of stopping it. I kind of remember realizing I was over reacting but even that would not stop what was happening or even slow it down. Did my husband respond in the best way possible? Probably not. He just kept telling me to calm down and to stop. It might have been better if, along with telling me to calm down, tell me that we can work it out or talk it out together and that he is there for me. Maybe, maybe not. On the other hand, if I had someone screaming and acting with so much anger, I would not known how to deal with it either.
I wish I could say that this incident was something that does not happen often. I wish I could say that it will never happen again. I wish I could say that I will work on preventing it from happening. With FTD, it's impossible for any of these statements to be true. The dead and dying brain cells can't do it. The cells cannot repair themselves or regrow. The effects of these dying cells depend on which part of the brain is involved.
The frontal region of the brain is what controls social behaviors and emotional behaviors. It is the part of the brain that tells us it is not appropriate to talk back to the pastor during his sermon. Yes, I did do that. It is also the part of the brain that tells you not to stick your finger in a pot of nearly boiling water to determine if it was hot yet. Yep, I did that one too. When the frontal lobe is damaged, we tend to focus on unimportant things or details and not recognize the important ones. The frontal lobes also affect our language skills, including finding the right words. They also affect motor function.
Obviously, the frontal region of the brain is the "fronto" part of Frontotemporal Degeneration. It's not difficult at all to determine that it was the front of brain that failed me that day.
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