While I do try to not speak for everyone with FTD, sometimes it is difficult not to. Yes, no two cases of FTD display the same exact symptoms and the disease progresses differently in each person with the disease. One person can need to use a walker or be in a wheelchair to be able to move from one place to the next. The next person can take long walks or even jog with no assistance. One FTD'er discovers hidden or new artistic talents but the next loses artistic abilities they had before they were destroyed the disease. Some can still hear well, the brains of others do not allow them to hear, or they hear the sounds but the brain can no longer interpret the sounds into words. Absolutely everything a human being can do is controlled by the brain.
A good example is the hearing. A person with FTD can score perfectly in a hearing test conducted with just the beeps because our ears can hear fine. I explain it as "My ears can hear, but my brain can't." I become irate when someone says to me, "You just have to do it more often" or "You only have walking issues because you need to get out of your chair and walk more often." There are an endless examples.
I already know the limitations my disease has put on me, I don't need people telling me I just need to pay attention. I do not need people accusing me of being stupid or lazy. I often feel that way on my own even though I know I am not, so please don't remind me.
Last week I visited the office a physician I had not seen before. The physician's assistant came in first to get my history and explain things to me. With everything being automated, he was typing into a laptop the entire time so he was not looking at me. Since he was in front of me, but several feet out of his visual field. He was rattling off the same information and questions that he does dozens of time in just one day, so it was rapid-fire.
On that same trusty laptop, I suspect it clearly said "frontotemporal degeneration" or, at least, "dementia." I finally, politely I hope, said "Excuse me but I just cannot hear you." I explained that I had FTD and if I could not see him, I stood no chance of understanding." He was gracious and apologized. He apologized and took a step closer to me and started talking much more loudly. I kept the irritation in and laughed that he thought he had to speak louder. A HUGE but here... when he started dumbing down his vocabulary and defining one or two words in every sentence, I lost it.
I was good, honestly I was. I didn't scream at him, jump up and down, slap him or walk out. I certainly wanted to but instead said (okay, I said it very loudly.) I am NOT STUPID! I only need for you to speak clearly and at a normal pace instead of rattling off all the things that I am sure you get sick of saying." He left the room quite quickly after that and, most likely warned the doctor before he came in.
Fortunately, the doctor was somewhat familiar with FTD. He is a gastroenterologist and has dilated enough esophagus's to know at least that issue the disease can bring. I actually loved him! I did not complain about the PA but, if I experience it there again, I will. Didn't seem wise to complain before he sticks scopes up and down inside my body!
I wish it was only PA's and Physicians or other medical providers who act this way with someone who has FTD. Unfortunately, it is rampant.
I cannot count high enough or remember well enough to tell you how often I am told things such as "You can do that yourself, you know how!" which develops into a shouting match and I break down crying and apologizing profusely. When I started to be able to cry again, after several years of FTD preventing it, I thought it was a good thing. Nope, no way! Crying is no longer cathartic. Throwing things at someone is not very helpful either. Fortunately, my aim is off because of my double vision so I haven't hurt anyone... yet.
I guess I should clarify. I don't recommend yelling at healthcare professionals, caregivers or family members. It doesn't help these relationships at all and can leave you more upset than you were by whatever it was that happened. Yep, I don't recommend that but cannot tell you how to control outbursts that come out of total frustration. I haven't figured that one out yet.
To clarify this to family, friends and caregivers, I am fairly certain that it is not just me, this one person with FTD, who cannot control the outbursts. I know I cannot stop them, it is the disease that robs us of that control. I will not say "It's not me, it's the disease." I hate that expression! I am a person, a human being, and do not deserve to be defined by my disease. If you know someone who is missing a leg and cannot climb stairs in that manner? "Oh, don't mind him, it's just his condition." Would you tell that person, "You know you can do that, just do it"???
Well, that explains us. No, you cannot see a missing body part on us. However, you should be able to relate to the fact that there are parts of our brain missing.
Now, why do I scream these things at a family member or friend but don't at those like the PA that started me into this rant? That is easy. Just as a child whose teacher tells you how kind, helpful and sweet your child is and makes you turn your head to see who is behind you because you are positive the teacher cannot be describing your child. Yours is the one who comes home grumpy, grunts a few words or explodes at you and when you ask a question and refuses to do a simple chore. How can this be? Simple, because if s/he acts out at home, s/he probably knows there may be repercussions but that you will still love them. So that is where they are comfortable to let out their frustrations just as we are.
But, I also don't like being referred to or treated like a child. I may, at times, behave like a child but I am not one. Yeah, caregivers can't win some days either!
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