Please Excuse My Whining

Ahhh... another week, another frustration of someone I care about not believing there is anything wrong with me. I cannot begin to explain how great this frustration is. Here I am, trapped in this brain that just won't cooperate with me, but because not everyone can see the symptoms, the disease doesn't exist.
I stumbled across a list of differences between Fronto Temporal Dementia and Alzheimer's Disease that might help others understand just a tad better. I wish I knew the source of  the excerpt because I suspect there might be more beneficial information there, so I will keep looking.  In the meantime:

Frontotemporal degeneration is not as rare as once thought; it is considered to be the second most common cause of early onset dementia. However, because of the wide range of symptoms and their gradual onset, FTD is often initially misdiagnosed as a psychiatric problem, Alzheimer’s disease, Parkinson’s disease or vascular dementia.

FTD vs. Alzheimer’s Disease

 *Both frontotemporal degeneration (FTD) and Alzheimer’s disease (AD) are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. However, several important distinctions can help to differentiate between the two:

 *FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimer’s disease is loss of memory.

 *FTD often begins earlier than AD with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimer’s patient is diagnosed.

  *FTD patients exhibit behavioral and personality changes (lack of concern for social norms or other people, lack of insight into their own behaviors), but may retain cardinal features of memory (keeping track of day-to-day events, orientation to space and time). AD patients display increasing memory deficits, but typically retain socially appropriate behavior.

 *Some FTD patients may have only language dysfunction (this is seen in the two types of progressive aphasia: semantic dementia and progressive non-fluent aphasia). And the pattern of language loss may be specific, such as an inability to name a familiar, everyday object. The language decline seen in AD patients involves a milder problem with recalling names and words.

 *FTD patients are more likely to display early motor abnormalities, such as difficulty walking, rigidity or tremor (similar to Parkinson disease), or muscle atrophy and weakness.

I will add a little more information to go with this. FTD does not present itself the same in each case. Most will have a combination of the symptoms listed or sometimes just one. Bear in mind, the list above does not cover all the possible symptoms, it is just pointing out some differences between the two diseases. 

For instance, at the risk of repeating information from previous posts, I was definitely in the average age span when first diagnosed. I definitely fall into the category of behavioral and personality changes. (One item not included in the above list in this category, is apathy or a flatness of emotions, feeling no empathy for others... totally a change from the person's previous personality.) I do struggle with speaking, more so when stressed or uncomfortable. I will struggle for the correct words, my speech pattern is slower and I stutter, which before was never an issue with me. I have difficulty operating things such as the microwave, stove and washing machine. A few months ago, I started having some motoring issues. My right leg just doesn't seem to get the messages from my brain and often drags when I am walking. I  have mentioned before that I have started falling more frequently and am beginning to have problems clearing my throat and sometimes with swallowing. Not to forget my first symptoms of constantly getting lost, even in familiar places, and the lack of impulse control. 

As I have said a few times before, I am still blessed with the ability to read and, obviously can still write. Writing is much easier than speaking, because if I can't think of the words, I can sit here until I do or try to come up with alternatives. I also have the opportunity to edit and there sure is not editing or filtering on what comes out of my mouth! 

All of this explains why people have trouble believing I have FTD. For starters, they love me and don't want me to have anything wrong with me or my brain. Secondly, most of them don't see me often and some see me rarely and our only communication is by phone and/or internet. It's pretty difficult to pick up on the symptoms that way. Well, except for the personality changes and the lack of a verbal filter on my mouth. These are people with whom I am most comfortable, so the speaking problems are at a very minimum when talking with them. In addition, most of them have have previously dealt with someone suffering from Alzheimer's Disease, and have trouble realizing the differences. So I do understand why they have trouble accepting or believing that there is something wrong with my brain. I suppose I should feel grateful that not everyone realizes how uncooperative my brain is, but the struggle continues. My frustration lies in that they don't recognize what I go through just to make it through the day and don't understand why I no longer paint or no longer volunteer the way I used to or why I am no longer active in my church. It hurts that they are perhaps thinking I have just become lazy and don't care anymore.

Well, I apologize for the length of this post and for the whining. Hopefully, despite that, my frustrations will open some eyes to the differences between the types of dementia and let the other sufferers know they aren't alone.