… precarious, elusive, undependable, insecure. — oh, and scrambled also, of course.
Tru here. This entry is written by Truthful Loving Kindness (yes, that is my full legal name) for publishing at http://www.truthfulkindness.com , so PLEASE address any questions or comments to that website, regardless of which website shows these words.
******* Life has seldom felt more precarious and SLIPPERY than it does now. Not only from my sensory input, but also UNDERSTANDING that sensory input.
Understanding what i see is sometimes Fleeting and Precarious, so often unreliable.
Sight: My head bobbing up and down on my neck adds to difficulty in grabbing and securing what i see; i cannot stay still in order to stabilize my vision — it keeps changing. Plus i am SOoo frequently seeing bugs (even around my plate at the table) that it makes eating, and moving from place to place in the house more challenging. (Some people see small people or animals for visual hallucinations and illusions, but mostly i see bugs, LOL). — And Lately i have been forgetting that i experience hallucinations, so everything is “real”. Many (but not all) of my days are also spent with symptoms similar to tunnel vision.
Understanding what i hear is Fleeting and precarious. Seldom reliable.
Sound: Constant tinnitus, but my sound hallucinations are currently rare. Right now the problem is understanding what i hear; i often think something else is being said because noise is not properly organized by my brain. The sounds (figuratively) dumped upside-down in my brain bucket, then my brain gets to try to organize them into “That is the sound of the computer, fridge, etc” + “That is the sound of my tinnitus” + that is a dog sound + that is a voice word + another voice word . … And my brain is having more difficulty making thoughts and concepts out of those words. Currently doing better with written words than spoken words, but still only in very basic concepts. Poems and Jokes are frequently beyond me in either format. One moment i understand and then less than a second later that understanding has broken off. i might get the concept again, and i might not.
Still enjoy music – but must be smooth soft sounds and must not be at the same time as trying to understand something else; Less Likely to understand anything else if music is going. All efforts are mutually exclusive.
Sense of smell is mostly gone.
Sense of taste is mostly gone.
i can taste salty and sweet, but rarely taste foods; i can taste synthetic apple drink. i “taste” my morning egg, but if i remove the salt and pepper i do not taste anything. Eating is mostly a textural and visual experience — and almost always disappointing.
… So All-in-All, very few experiences are reliable except sense of TOUCH.
Stroking the dog’s fur. Hugs. Warm blankets. These things are stable and reliable. Right now these do not slip out of my grasp. They are REALITY in an environment of slippy-sliding experiences.
My understanding of anything other than touch is very VERY temporary, if at all; i might understand for a fraction of a moment — but then it is gone. if i continue to focus then i might understand again for a fraction of a moment — but then it is gone. etc. When you add the Physical instability of mobility complications (Falls, stumbles, etc) and that emphasizes how the Mental and Emotional precariousness can feel like the world is a very unstable, un-Safe place to be.
Personal Note: Now i seldom have days that i feel ABLE to put words together for writing — no matter how long it takes. So i will be posting less often. Change is inevitable. i am looking for archival opportunities.
Prose by Truthful Kindness at https://truthfulkindness.com/2014/11/07/hold-hand-anchor-me/ ;
Sensory Challenges by Agnes Houston at https://youtu.be/U_L2107EweQ ;
Need for Touch by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/need-for-touch/ ;
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SHARE dementia awareness thru buttons below. Subscribe “FOLLOW” button is at the very bottom of the page, with “Category” Links, “Recent Posts” and “Archive”. If you put your eMail address there you should get an eMail each time i write a blog entry. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. … *** … If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but i have cerebrovascular disease and Lewy Body Dementia symptoms very slowly advancing. SPECT scan showed targets of both temporal Lobes, along with Left high parietal Lobe. Current theory for cause of my dementia symptoms is over 30 years before diagnosis and treatment of Lyme and Babesia — plus probable nocturnal seizures. … ******* … Text Copyright © Truthful L. Kindness on 05Mar2023. Digital Painting by Truthful Kindness Titled “Slippery”; digital painting by Truthful Kindness on 2023Mar04, using iPad ProCreate app with Alaina Jensen’s Alcohol Brushes. … ******* … i dont mind re-posting of things i write, but if you re-post then i expect you to make it clear this is NOT written by you. My authorship as Truthful Kindness (my legal name) must be clearly identified, and provide very prominent Link to my website so that questions and comments can be addressed to ME personally at http://www.truthfulkindness.com . .
Tags: ability, alzheimers, cognitive decline, dementia, insecure, living with dementia, mood, precarious, sensory processing, strategy, symptoms, . S&S categ: mood, sensory, touch
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Just wanted to say thanks for your wonderful blog posts. Your writing has touched me deeply and helped to put things in perspective. Reading about your daily struggles and challenges has made me realize how important it is to appreciate our experiences in life.
I’m sorry to hear that you won’t be posting as often, but please know that your words have made a difference in my life and I’m sure in the lives of many others. Thank you for sharing your journey with us, and I wish you the best.
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Your readers are with you in thoughts even though we can’t touch you. But we are here to keep you company. 💐
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