I swear they should rename this disease FTF, for fronto-temporal frustration. I know I am always writing about my frustrations, but this is because I am always dealing with frustrations. I'll tell you the one I am dealing with right this minute. I had finished this blog and was about to click on "publish" but somehow did something wrong and it all disappeared. Now I have to try to remember what I had written...
Today's frustrations were several. First, I had an appointment with my chiropractor, who I dearly love and she does wonders with my neck and back which limits the headaches I suffer. Despite what she believes, though, she cannot cure my FTD! In her defense, she is studying to become a neuro-chiropractor, so she does understand neuro problems better than most. However, she still keeps comparing it to Alzheimer's. I have given her literature, but it's obvious she has not read any of it. I do not believe she can cure my FTD by shining lasers up my nose to stimulate the brain. I do not believe that she can stimulate the other areas of my brain and they will allow the shrinking areas to regenerate. It truly wears me out. Can we, please, leave it alone for at least one appointment?
From there, I went to my hairdresser where I encountered one of the things FTD sufferers hate hearing the most. "Oh, that's nothing, I forget things all the time too." Oh, if only it were that simple! I want to say back "Yes, but you don't have a terminal illness that causes it." But I don't.
There are so many things that I would love to say to caregivers and anyone who loves or happens to come across someone with FTD.
- Please, do not compare FTD to Alzheimer's. Yes, they are both terminal diseases and are both horrid, but they are not the same, do not progress the same and should not be treated the same. This actually makes me feel like you don't think I know what I am talking about.
- Please do not ignore me when I am speaking. I know I ramble on, sometimes about inane things, but in there somewhere, I do say some intelligent and important things. When I later refer to what I said and get a blank stare from you and you insist I never said it, I feel that you think I am stupid or imagining things.
- Also, when I am speaking, please do not finish my thoughts or sentences for me or start to respond while I am still speaking. It takes me longer to think of all the right words and get my point across, but you do not always know what I am going to say. When you do that, I feel like you don't think what I am saying is important enough to listen.
- Please, if you see I am struggling with a task, do not jump in and take over. Asking if I need help is a good thing, assuming I can't do it at all is not. (On a personal note, my husband really gets this point and I probably don't thank him enough for helping me to do it myself.)
- Please realize that when I walk slowly or unevenly, I am not drunk or under the influence of drugs. Do not make "cute" little remarks, they are not funny and cut to the quick.
- Please, please, please... when I go to another room or quiet area, I am not ignoring you or being rude. Often times, even normal goings-on are over-stimulating and I need to go to a quiet place to refocus. Do not keep coming in "to check on me." That defeats the purpose.
I will stop with just these six. I am sure you get tired of my rambling on about the frustrations of my every day life. I do realize that we all have frustrations we must cope with, but for FTD sufferers, or at least for myself, the coping mechanisms don't exist any more, they left right along with the areas of my brain that have gone away.
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