A lot has been going on, but with blurred vision and tremor, it takes forever to type and my speech isn’t much better. I really need audible and dragon!
I’m going to attempt a timeline of events because it’s just easier for me.
Since 12/22, I suddenly developed severe restlessness, tremor, insomnia, blurred vision and confusion. The restlessness has so greatly improved but my other symptoms are worse and more numerous I’m disoriented and get lost and panic in familiar places, I stumble when I try to walk, I “zone out” and it takes me hours to complete a simple task. It can’t make decisions, have limited short-term memory, I stutter or suddenly can’t speak and when someone is speaking to me, it may as well be gibberish. There’s a lot symptom-wise, but I’ll save it for part 2.
I’ve been to the ER where they did a brain CT, labs, IV fluids and an EKG. Mostly normal results, but I guess sobbing when you are in earshot of the docs debating whether to admit it or discharge you with no answers, of course you’re concerned and upset! No, I’m treated for PTSD, so I must just be imagining the 2 blown pupils and difficulty verbalizing! Clearly, I’m just a psycho or a junkie
Since then, I’ve seen 2 neurologists, my PCP, pain management, outpatient lab, brain MRI, and I’m supposed to have a sleep/wake EEG (no way, never dealing that torture ever again) and see my neuro-ophthalmologist.
So far, my condition has been confirmed to be Encephalopathy with tremor. It’s essentially a form of dementia with a splash of stroke and parkinsonism, but is always from an underlying cause. It can sometimes resolve with treatment of the disease causing it. It can also be progressive or permanent. Once my labs come back, I’m hopeful it will identify the cause and I can get rid of this cognitive impairment and begin occupational therapy to get as close to independent as possible.
I can’t do any of the things I usually enjoy because my vision and shaky hands. I get confused and feel like I’m in slow motion. I feel really lonely and bored. I don’t go out, because I don’t want to burden anyone. I now have to be pushed in my wheelchair. I don’t want to be a job instead of a friend. (These are just my feelings, nothing anyone has actually said anything about).
I’ll go into detail in my next post and will address any questions, suggestions or comments you leave. I have been reading them all, it’s just very difficult to concentrate, understand and process. It’s as if something has attacked my brain and gained control of it.
I truly hope the blood they tested shows evidence of the cause of my Encephalopathy. I want to regain what I’ve lost. I’ve accidentally taken the wrong medication, panicked because I didn’t recognize my surroundings, stumbled and injured myself because I can’t balance… Oh, and it would be nice to take a real shower and not forget how to tie my shoelaces, remember to eat occasionally and not take over 10 minutes to put a sock on my foot!
I do periodically post to instagram, but it’s a little overwhelming, so don’t be offended if I don’t respond quickly. I can assure you I’m doing my best to keep up and your kindness and compassion is so encouraging! No one here has pitied me or been insensitive and that has been a blessing.