..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.
Hello. Truthful Kindness here. It has been a long time since i shared recent diagnostic data.
General: I recently turned 65yo, and further testing has taken place. My short-term memory is strongly affected, and detailed fine-muscle control is becoming a problem; i can no longer drive, cook, babysit, handle money, bathe myself without help, brush my hair without help, button buttons, etc. i began losing smell and taste sensory data about ten years ago, so now i smell and taste very little. Trouble recognizing some loved ones (especially if hair color or body shape has changed drastically since the years we grew to know each other). Especially noticeable that i rarely recognize the way my husband LOOKS, altho i still recognize the sound of his voice.
Communication: Much problems with brain processing of sound data so i use lip-reading, but even video chat is getting awkward because the words i hear do not seem to coalesce into thoughts and phrases much, especially in late afternoon or evening. Can no longer handle more than just a few persons even in video chat; after short time i am just left with floating words everywhere, and i cannot grab any of them to understand concepts. Audio communication is more difficult than written conversation for me (probably impacted by the ease of slipping back to frequently re-read recent interactions). But my level of following written communication is probably roughly equivalent to 5th or 6th grade because following things like conditional clauses and consecutive thought process is strongly impacted. i need to easily connect the subject with verb, etc.
Other senses: Easily overwhelmed by movement, light, and sound. Rarely left home in more than 10 years. About once every few months i will try to find quiet restaurant and we will dine out of the house. i (obviously) also attend doctor appointments. Only rarely watch movies or shows, and then almost always they need to be something i have seen a few times before because it is difficult to follow story-lines.
Hallucinations: i rarely have hallucinations except for during and after my seizure-type events while i am asleep and immediately afterward. When i do have them they are rarely visual, but more likely to be audio or smell.
Confusion: my most extreme confusion is also after my seizure-type events. Sometimes extreme enough that gives toileting complications.
Mobility; my Walker is constant companion even inside the house now. am no longer able to reliably transit in the chicken yard (with gopher holes and chicken diggings) so husband has taken over care of my small flock.
These symptoms seem pretty severe, but they are the result of very slow cognitive decline for more than 20yrs, so the progress is still slow enough that doctors continue calling it “Mild Cognitive Impairment”. The things we KNOW are: 1] these dementia symptoms are not caused from mood disorder or problems from past or current trauma (per psychiatrist verification process during earlier years of cognitive decline). 2] SPECT scan 2008 showed targets of both temporal lobes, along with Left high parietal Lobe. 3] Sept 2022 EEG showed global, non-specific encephalopathy which cognitive specialist theorizes are from over 30 years before diagnosis and treatment of Lyme Disease and Babesiosis (malaria-type disease). and 4] not Alzheimers-type dementia (per Lumbar puncture Nov 2022).
… So now it is the end of 2022. After all of that, My current diagnosis is still Mild Cognitive Impairment, but i have cerebro-Vascular disease and Lewy Body Dementia SYMPTOMS very slowly advancing. Now the Current theory for cause of dementia symptoms is over 30 years untreated Lyme and Babesiosis — discovered both these conditions too late to arrest the cognitive aspects of deterioration. Spent three years treating Babesiosis (first case of the disease in our county, and my Lyme specialist said it was the most resistant case he had ever dealt with). Then two years treating Lyme Disease, but suspect those parasites may be still active even after 5 years intensive treatment. Actually, when he finished treating Babesiosis he said we would need to re-test periodically, because they may not be truly gone yet. And i left Lyme treatment even tho doctor said it was probably not gone yet; after five years i was just missing too much of LIFE, (especially time with grandchildren) with nausea and complications from treatment, to continue intensive treatment despite advancing cognitive decline. — Plus aspect of probable nocturnal seizures (sometimes more than 10 per month), but seizures were not triggered during the “abnormal” EEG, so not even clear diagnosis on that aspect; just that the symptoms match conclusion of nocturnal seizures.
… and that’s it for now, my friends.
The battle for diagnosis can be a very long battle for some of us, and often even AFTER diagnosis if you need to see a different doctor for another cause (for me it was a movement specialist from UC Davis) they may stick their oar in with a “No you do not have dementia” triggering ANOTHER process of diagnosis. Diagnosis process can often be an emotional Ferris Wheel. Autopsy is the only SURE diagnosis for what might be multiple contributing types and causes of an individual’s dementia symptoms.
Lyme notes and Links at >> https://truthfulkindness.com/about/life-other/med/lyme-notes-and-links/ ;
Prevalence of seizures with dementia Links at >> https://truthfulkindness.com/2022/10/23/dementia-seizure-i/ ;
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