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What’s on your mind this morning? We were all new here once. Don’t be bashful.
I’m more impaired than I look and have decided that I’m better off being open about it.
My local hospital has settled recently on Dementia with Lewy bodies as a diagnosis and would rather have nothing more to do with me. There isn’t any cure and the treatments are palliative if they work at all.
The local hospital’s diagnosis is unofficial as they are not my primary care physician. My primary care physician at the Veterans Administration cannot make a diagnosis because he is not a neurologist. A pediatrician friend of mine laughed out loud when I told him the story. I can laugh about it too most days but I believe it. The next part isn’t funny. I can’t see a neurologist anytime soon. The VA’s local contract neurologist retired during the plague and the VA hospital in Portland is jammed up with very sick people who get priority over me for the same reason. In the meantime I’m in Limbo and it’s not obvious that an official diagnosis would really be helpful. I would rather not be declared legally incompetent any time soon but I can see that I’m going to need a guardian and I would like some choice in the matter.
Some days are decidedly worse than others but the better days aren’t bad. I still live on my own.
For the time being I’m trying to retain an identity as a mechanic. I’m hoping that bicycles present the right level of challenge. I bought the tools in the picture above for a song in September along with some frame tools, a bicycle work stand and boxes and bins of parts.
I’m beat this morning after rearranging the room I use as a workshop with an eye on simplification. A place for every tool I want to keep and as many of them as possible in plain view.
One problem I have is that things disappear when I set them down. They blend into the background and I forget where I put them. I’m better off if I have fewer small things and that particularly applies to things I have more than one of.
I moved cross country four years ago and didn’t keep much. In the last few years I’ve bought several boxes of tools. They’re cheap sometimes at garage sales but you have to take the whole thing.
One category of tool that I have way too many of is screwdrivers. Others include wrenches and pliers. Way too many. They can lurk nearly anywhere, often with other tools, and I’m gathering them all up. The goal is to have only one set of tools. I’m curious to know how many screwdrivers I find.
Maybe I’ll have a picture next week.
I stopped drinking coffee in March last year after I recovered from the COVID but the reason is ambiguous. I dropped a cup of coffee, burning my leg and ruining a good pair of jeans. I only noticed the loss of taste in early May when it started getting reported in the press as a symptom. I’d been a daily drinker since adolescence with the longest break being the first week of Basic. I bought a pound of Peet’s in September and it just barely smelled like anything so I gave it away. I don’t miss it at all and I’m still surprised.
It’s spotty though. I can smell and taste vanilla and chocolate. Curry powder is another matter entirely. At least one of the ingredients is both strong and noxious. I suspect that the balance is off due to not being able to smell the rest of the spices in it. Eating is less enjoyable.
Loss of sense of smell is one of the supporting symptoms in a diagnosis of Dementia with Lewy Bodies. Looking back on it now I’m less certain in attributing it to the Covid rather than the dementia. There isn’t really any way to tell. I don’t remember enough.
Dementia with Lewy bodies From Wikipedia, the free encyclopedia
Dementia with Lewy bodies (DLB) is a type of dementia characterized by changes in sleep, behavior, cognition, movement, and regulation of automatic bodily functions. Memory loss is not always an early symptom. The disease worsens over time and is usually diagnosed when cognitive decline interferes with normal daily functioning. Together with Parkinson's disease dementia, DLB is one of the two Lewy body dementias. It is a common form of dementia, but the prevalence is not known accurately and many diagnoses are missed. The disease was first described by Kenji Kosaka in 1976.
REM sleep behavior disorder (RBD)—in which people lose the muscle paralysis that normally occurs during REM sleep and act out their dreams—is a core feature. RBD may appear years or decades before other symptoms. Other core features are visual hallucinations, marked fluctuations in attention or alertness, and parkinsonism (slowness of movement, trouble walking, or rigidity). A presumptive diagnosis can be made if several disease features are present, such as symptoms or certain results of blood tests, neuropsychological tests, imaging, and sleep studies. A definitive diagnosis usually requires an autopsy.
Most people with DLB do not have affected family members, although occasionally DLB runs in a family. The exact cause is unknown but involves formation of abnormal clumps of protein in neurons throughout the brain. Manifesting as Lewy bodies (discovered in 1912 by Frederic Lewy) and Lewy neurites, these clumps affect both the central and the autonomic nervous systems. Heart function and every level of gastrointestinal function—from chewing to defecation—can be affected, constipation being one of the most common symptoms. Low blood pressure upon standing can also occur. DLB commonly causes psychiatric symptoms, such as altered behavior, depression, or apathy.
DLB typically begins after the age of fifty, and people with the disease have a life expectancy of about eight years after diagnosis. There is no cure or medication to stop the disease from progressing, and people in the latter stages of DLB may be unable to care for themselves. Treatments aim to relieve some of the symptoms and reduce the burden on caregivers. Medicines such as donepezil and rivastigmine can temporarily improve cognition and overall functioning, and melatonin can be used for sleep-related symptoms. Antipsychotics are usually avoided, even for hallucinations, because severe reactions occur in almost half of people with DLB, and their use can result in death. Management of the many different symptoms is challenging, as it involves multiple specialties and education of caregivers.
As you can imagine I’m not wild about this and there isn’t anything official about it yet. I’m not a doctor of any kind and my thoughts about dementia are purely my own.
I hope to publish a few of my increasingly disjointed thoughts, opinions, and memories every Tuesday morning for the next thirty years but it’s looking pretty unlikely. Without an official diagnosis there is no accepted prognosis either and it makes arranging for care more complicated. I may be in for a rough ride but in the meantime I’m safe enough.
Come on in. New Day Cafe is one of our DailyKos openthreads posting at 07:30 Portland Standard Time. If you have a question to ask or something you want to say don’t be bashful.
Sign up here. Our Rules of the Road are here.
What’s on your mind this morning? We were all new here once. Don’t be bashful.
Smile.