New Brain, New Blog
WELCOME READER
Over the years, I have created several different blogs. . . part personal-journals, focused on specific topics and eras of my life. . .part information I wanted to share with friends or family. I've blogged about my experience as a widow and as a new artist. I've even co-authored a blog with my dog, Bella. This journal is similar, but I hope it serves many more purposes. It is bound to become more and more disorganized, as my dementia progresses. So I won't even try to plan how to organize it now. I've considered several "sub-titles" like "The Long Goodbye" with chapters like letters to specific loved ones, or "What I want others to know about Dementia. . .from the patient's perspective". But I don't trust I can follow such organized processes long enough to make sense to anyone. Call the format "organic." It's going to be LIKE a journal. . . with dates and a title or heading for each post. That's what blogs are, right?! I'll post when I can, and I'll TRY to stay on topic. . . as hard as that is for me now days.
If I, or someone I love, has invited you to follow this journal, I hope you get something out of it. If there's anything I know for sure, it's that everyone will be touched (sooner or later) by a mental illness related to dementia. Sooner or later, my words will include something that you can relate to. Whatever brought you here. . . I'm glad you came. Feel free to post comments, if you like. I promise I will read them, or I will ask someone to read them to me. Your thoughts are important too, and I want myself and others to hear what you have to say. Sometimes it helps (you and others) to share. We're all in this together.
BACKGROUND TO MY DEMENTIA DIAGNOSIS
In 2010 to 2012 I had a heart-attack and a couple of TIAs (mini-strokes). I know this, because my medical records document such facts. In reality, I don't remember much about these events... because I've had memory issues since about 2010. . . and because I was dealing with so many traumatic health events suffered by my husband and son that started in 2008. My husband had his own heart attack and major cardiac surgery, along with his second stroke about the same time my son started experiencing psychosis, diagnosed with Schizoaffective Disorder. In December of 2013 my husband died from Cancer in his kidneys. So.....my brain has been in a kind of a fog, off and on, for years now. It has all left me with many emotions and thoughts about mental health in general. I am both fascinated and terrified at the capabilities of our human brains.
In 2019, while living in Delaware with my "last great love" Steven, I was diagnosed with Mild Cognitive Impairment, aka MCI. It was no surprise to me. For the last 10 years I've had what I called my "Plan A Plan B Memory Issues." My memory storage system had a tendency to only recall the latest information (Plan A) I put in it. For example, if I stored "We're going to the store." into my brain, but at some point, for some reason, that became, "No, we're going to the movies instead." I had trouble remembering (Plan B) the "movie" part of the plan. The accountant in me sometimes referred to it as FIFO (first in first out). In 2019 my primary care doctor (in Easton, MD) subscribed the drug Memantine to help. I think it did, but my memory issues got worse over time. In fall of 2023 I asked my current primary care doctor (in Sebring, FL) if he thinks it might be time to increase the dosage. He suggested I go see a Neuropsychiatrist he likes, to get evaluated to see if my MCI diagnosis was still appropriate. In the meantime, he added a second drug to my treatment, Donepezil. On the day after Christmas 2023, I had a full day assessment. They did brain mapping and lots of tests. I did not get the results until February 7th. . . only two weeks ago.
DEMENTIA. . . ABSOLUTELY NOT ALZHEIMERS
I had assumed what I had was "Early Onset Alzheimer's." But the brain scans and tests told the doctor it was definitely not Alzheimer's, which is a different type of dementia that shows up in different parts of the brain from where my malfunctioning shows up. She said my weakness is most obvious in my frontal lobes. But she also said she suspects the cause of my issues were the two TIAs I had over a dozen years ago. She said I've likely had symptoms for years, but she said her tests show her I have a very high IQ (not to brag, but I've heard that my whole life) and it's harder to identify in high IQs, because you "use other parts of your brain to make up for deficiencies in the damaged parts." Isn't it all so fascinating?! Anyway, she went on to explain the various types of dementia (besides Alzheimer's) and how they have different causes and varying symptoms. She talked a lot about two types that I might have, frontotemporal dementia (based on the location of my symptoms), and vascular dementia (based on the possible cause in my case). She said that if, in 6 months, we came back in, and Steven said my personality had changed, she could be sure which type I have. As I research about dementia, I realize how complex it is. It must challenging to diagnose it fully with 100% confidence, especially with only a one-day assessment. I've spent time wondering what my future will be like. I've read many articles and posts about famous people like Bruce Willis, Glen Campbell, and Robin Williams who had Fronototemporal Dementia. The article on Williams mentioned initial diagnosis of another type of dementia. The symptoms are different with everybody. . .and often the symptoms blend among types. So for now, I am fine without trying to fit into a subtype. I have dementia, not Alzheimer's.
I have a lot of things I want to document about my experience. , , as long as I can. During this "early phase" I expect it will help me to recall the progression, so new deficits and symptoms will have less power to upset me. I used to be calm, and hard to upset. That is changing, and I want to understand, or at least, better accept it, as my disease progresses. For me, writing is cathartic. But I know I will lose the skill, and possibly the interest in writing introspective thoughts. In the future, even after I can no longer manage a new post, maybe my experience will help others. . . be it fellow patients, caregivers, loved one, whomever. The more you know. . . the better we all are.
Next time I want to TRY to explain how I have seen my symptoms change recently, by sharing what it feels like from my perspective. And I may decide to briefly talk about my family history with illness like Parkinson and Alzheimer's. So stay tuned.
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