Reactions to Stress

The past week has been one of the most stressful that I can remember. It would probably qualify as the most stressful if I was to not count the deaths of loved ones.

I am wanting to move from Pennsylvania to North Carolina to be with our daughter. My therapist is 100% behind this. She insists that those with FTD should spend as much quality time as possible with their loved ones before it is too late to enjoy them. My husband and I are both retired, so there is no reason why we could not do it. Except, he refuses. The reasons he gives me come across as extremely selfish. This is what is causing the extra stress, as if living with FTD is not stressful enough.

I have also discovered something. Stressful situations make my FTD symptoms worse. I have heard from quite a few others with FTD say the same thing. Fortunately, at least at this point, when the stress is lifted, after a couple days, the symptoms improve some. It doesn't even have to be a bad stress. As I wrote in my last blog entry, I experienced this following a baby shower that I had enjoyed immensely.

Now, with the stress of trying to convince my husband that moving is the right thing to do, it is like FTD has body slammed me repeatedly. When I am walking through our house, I am constantly banging into things such as furniture and wall edges. I touched up the paint on one of the wall edges, the one I hit constantly, a few days ago and now it is chipped again. I don't dare go anywhere without my cane, yet I still stumble while using it. I am going to have to admit it's not going away and purchase a walker. I don't want to, I don't want to. Please don't make me!

I am also having difficult swallowing more often. This can be downright scary, even at the level it is now. I do not even want to imagine what this is like when it gets more severe, which it will.

It's bad enough now that I am not sure my body will recover any from this round of stress.

So, I am super stressed, what can my loved ones do to help? The big one is that my husband could agree to move, of course. In the meantime, all the things that are difficult or make my life difficult are much worse and I need people to realize this. When I am trying to accomplish a task and am just a couple steps away from completing it, don't push me to the side and take over when you realize what I am doing. All that succeeds in doing is making me feel useless.

Don't argue with me and don't point out things that I did incorrectly.  All that will accomplish is to cause me to blow up and say things I shouldn't.

My stuttering and difficulty finding words has gotten worse with the stress, so it takes longer for me to say things. Don't guess what I am going to say and try to finish my statement.  Don't talk to others about me in front of me, even if you are trying to help. An example of this is to not explain to people who are new to me that I don't talk well and if I start stuttering just give me time. If I am having trouble, I will explain it myself. Somehow, that does not affect my dignity the way it does if you say it.

Do take the time to give positive reinforcement when I succeed at doing something beyond my norm. In the same vein, just because I am able to do something today, please don't assume that now I can do it all the time. My abilities change from day to day, even hour to hour or minute to minute. Don't say "But you were able to do this last week."

When I run to the sink to cough up food that I am unable to swallow, please don't ignore it. I realize it is quite gross, but you need to make sure I am okay. You don't need to stand there the whole time, but at least check in on me to know that I can breathe, just like you would a choking victim.

Of course, I am speaking in the first person here, not speaking for all those with FTD. We all have different symptoms that progress at different rates. I figure, though, that this at least gives you some idea of how to interact with someone living with FTD.

While I am on the subject, do not try to compare one case of FTD to another. It doesn't work that way. There are many variations of FTD and even more combinations of those variables. Like I have heard repeatedly, "If you have seen one case of FTD, you have seen one case of FTD."