Saturday, June 17, 2017

I Need an FTD Filter

One of the problems with FTD is that I cannot figure things out anymore. When a person without FTD wants to solve a problem, usually they seek more information to do so. For me, and others with FTD, seeking out more information may actually make things worse. The AFTD has a webinar on its site right now about the 4 different types of bvFTD (behavioral variant) they have isolated. I finally sat down to listen to it. It started out fascinating me, but after less than10 minutes, I had to stop listening. As the speaker kept presenting more and more information on the study and its results, I could feel my brain becoming overloaded. I had developed a severe headache in my left temporal area. As each new piece of information was presented, the pain worsened significantly and the new info was not being absorbed. To put it simply, my brain could not handle any additional information and was at the point that my entire brain felt scrambled. Nothing made sense at all, not just the new information.

My mantra, as I have written many times, is "One Thing At A Time." I also stress how each "one thing" must be a short simple step, not a process. Trying to assimilate this new knowledge was too much. After giving up, I thought that if perhaps it had just been broken down into small key points, I might have been able to grasp the info. I needed a filter to block out the unimportant stuff and just let me hear the important part.

This past week, something happened that, to me, seemed to parallel this thinking.

My daughter and I have been badgering my husband for at least five years to get his hearing checked. This past year, it has become significantly worse. I will repeat things several times. By the fourth or fifth time, I am practically yelling it. His response is always "You don't have to yell!" It has been horribly frustrating and it didn't make sense to me. To me, it made sense that if I said it louder, he would hear it and understand. Often, when I say something, he will pick out a word that rhymes or sounds similar to one I have said and often make up a sentence to go along with the word. While it can be amusing at times, it is almost beyond frustrating.

The good news is that this past week he finally saw an ENT doctor and had his hearing tested. Low and behold, severe hearing loss in both ears, most likely from being next to and inside of race cars for over 40 years with no hearing protection. It doesn't matter why, it only matters that it can be corrected.

The most interesting part to me is when the doctor was explaining that while volume is an issue, his biggest problem is clarity. The doctor explained how that can be corrected by hearing aids now just as volume can. It truly fascinated me how the ear, and the hearing aids, can work that way. To keep it simple, the hearing aids filter out the bad stuff and clarify the good stuff. The doctor was extremely patient with me while explaining it and didn't react like he thought I was stupid for asking the same questions repeatedly. By me needing it to be explained several times, it enabled my husband to thoroughly hear it. Obviously, I still didn't understand it very well or I could have explained it more effectively here.

The best news is that he is scheduled for a hearing aid evaluation and trial period in another 10 days. Hallelujah, there is hope!

I know that if his hearing can be clarified, it will immensely help with our ability to communicate. With FTD, frustrations quickly lead to blow ups. While I am having to repeat things over and over, I do snap at him. After three or four times, I often begin to forget what I was talking about anyway and decide it isn't important enough to continue to try to repeat it again.  He does not want me to give up because he truly wants to know what I have to say. Quick path to a blow up every time.

Communication between the person with FTD and the care partner is critical. We both must know what is happening with the other and keep on top of what the other needs. When the communication is jumbled, it creates many problems. Hopefully, for us, the hearing aid will be an aid to our communications.

If only there was a filter or aid for those of us with FTD, our lives might be a lot easier. We could filter out the distractions and distracting noises that overwhelm us and filter out the information we do not need.  Now, that would be awesome!

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