Well I have repeatedly tried to make it a new habit to blog much more often and as you can tell, failed miserably. I am going to make a renewed effort to blog more often, I have a number of problems that throw roadblocks in my way to blogging regularly. First and foremost are my particular symptoms from atypical Alzheimer's Disease. It started in the frontal lobe in an area described as like a junction box for all other brain function which is why my executive function took the big hit first. Things like time management and multi-tasking which were crucial to my career were becoming increasingly difficult. Functions that I took totally for granted in the past were now becoming a struggle.
But I digress, which is another problem for me, staying on the right path to say what I mean to say which can also be a challenge and that gets a little harder all the time but at rates that are slow and often hard to notice. I have minor memory issues now which I did not have early in my diagnosis but they are still relatively minor and alone would possibly not be cause for major alarm. This will change in time and it is painful to think about so I mostly I don't think about it. So, now we have my problems with executive function mixed with forgetting that I wanted to make it a focus to blog more often and then you pile on my perfectionism which doesn't really mix well with my decline in abilities at all. This all leads to what I think some people living with a dementia diagnosis experience, avoiding the tasks that are painful or difficult in some way, whether consciously or subconsciously. After all, we are supposed to reduce stress as part of our regimens so if something is overly stressful we are supposed to forgo doing it. See, I can justify things very well! And it is SO important for people who aren't living with dementia to understand that what is hard for one person living with a dementia diagnosis isn't necessarily hard for another.
One of our biggest misconceptions to overcome is that we all experience the same symptoms which couldn't be further from the truth. Do we all have some similarities in experience that bonds us together? Yes, absolutely, but the precise symptoms vary drastically not only from one type of dementia to another but also from one person to another within the same diagnosis so what would seem simple in concept is hard to really get people to understand, we are all unique just like any other humans. We are not defined by the disease but rather our abilities are affected by the disease in increasing amounts but we are the still the same people within. Can and does it affect our personalities? Yes, but I would argue that inside our own perception of our inner self is still similar and that sometimes when I realize ways that I have changed in someone else's perception that it makes me very sad. Often this is because I don't naturally smile the way I did most of my life making it seem like I might be unhappy or angry, I am not quite as easy going as I usually was, I don't always get the joke, let alone be the author of the joke in the spur of the moment as I was most of my life.
The fact that when we are in very late stage, we do resemble one another in symptoms a great deal more than at any other time is true but this gets completely twisted in to beliefs that we are all so similar through the entire disease process and that these symptoms somehow make us similar people and that is absurd. And way, way too often as soon as someone hears you have dementia, you are discounted or devalued on your thoughts or opinions. After all, they are demented thoughts, right? Well technically, yes, but they are still our thoughts and just as valuable as anyone's thoughts I would argue. Now it made me hurt a bit to say "demented thoughts" because the word demented is so stigmatized that it is hard to explain and yet that is a word that many of us have owned and learned to live with. I had and still do have some of those stigmas in my own mind about the word demented especially and was completely mortified recently to see a movie description say a "demented man" and they were using the word in a way as to portray scary or criminally psychotic which is completely the incorrect usage of the word. But so many people grew up with common use of the word in that manner that it has become a major re-education to get people to realize they are stigmatizing something close to 47 million people on Earth when they use the word that way. It is definitely a process and one that never moves as fast as those affected the most wish it would move. By the way, my junior high English teacher would want all of you to also remember not to say "irregardless" even though some have tried to make it part of the English language since I was in junior high. But in reality, that is a double negative, the word should be "regardless" if you don't want English teachers (especially older ones) grimacing somewhere along with their students that took it to heart.
When a group of us were in planning and discussions to start an organization that was actually controlled and run by people living with a diagnosis there was no other word we were aware of that both encompassed all of the different related cognitive diseases that are untreatable AND widely understood as to its meaning other than dementia. So we came to the conclusion that the word "dementia" must be in our name and Dementia Alliance International was born.
Recently one of my fellow founding members of DAI (and currently a Chair), Kate Swaffer, was named to the World Dementia Council and I would like to publicly congratulate her on this achievement. DAI urged the World Dementia Council to add members that live with a diagnosis when there were none and now Kate becomes the second person with a diagnosis to join the council. Hilary Doxford, a DAI member, is the first and other member of the council that lives with a diagnosis. Major achievements in the right direction for our goal of "nothing about us without us".
So if you are reading this, thanks, I am flattered anyone cares frankly, but it all boils down to that I have not written much because with my other priorities and responsibilities, it leaves a limited amount of time and because both reading and writing have gotten so much harder for me that they used to be and take a long time compared to the past. I also let perfectionism of both my writing and the content get in the way of writing very often, hopefully I can try to do better. I guess today was a good day because I was able to accomplish this without it taking all day.
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