When LBD isn't just your average little black dress
Well, there it is. The term “LBD” sends many of us ladies into a spin! “Do I have one?” “Can I go get one?” “Is mine outdated or does it fit?” I can honestly say I have one, I don’t want to get one, and it just doesn’t fit, at least in this scenario. Never thought I’d hate the term “LBD” in my lifetime.
LBD, or Lewy Body Dementia, is the latest diagnosis for my love. It’s weird, but not surprising, as we continue to research and reevaluate the ever-changing status of his health. While the MSA, Multiple System Atrophy, diagnosis appeared to be relevant at the time, we hit an uncharacteristic plateau for about 18 months. The initial loss of vision and sense of smell, coat-hanger pain, slow movements and a shuffle, increased syncope, etc. and a few other physical challenges you don’t even want to mention, added to the “parkinsonism” of tremors and hallucinations, was daunting. Partnered with a family history of Parkinson’s disease, MSA (post mortem diagnosis), and ALS, we all felt comfortable with the diagnosis and tackled it head on.
The one uncharacteristic aspect of the disease was the plateau with no degradation of health. While it was very much appreciated, it literally set us into a tailspin of “the unknown”. And before you judge, it’s very difficult to go about your day-to-day life knowing that you don’t feel comfortable in your own skin because everything hurts, feels weird, or you just don’t “feel good”.
Imagine being given a harsh diagnosis with a relatively short projected life span, and then to be told that the doctors aren’t really sure whats wrong with you but you know, in your heart and mind, that there’s something really wrong …
Over the last several months, we’ve completed a bazillion tests; blood tests, genetic testing, MRIs, CAT scans, PET scans, DOG scans (see what I did there?), whatever in the hopes of being able to determine something. Testing for amyloid protein started out with nerve conduction testing followed by a biopsy of the liver that precipitated a visit to the emergency room, nearly dead with minimal vitals and a blood pressure of, like, nothing. Would you blame us if we opted to NOT do the cardiac biopsy? I say nay-nay.
If you research Parkinsonism, you’ll notice that there are several diseases associated with , or present within, the umbrella. We started with a diagnosis of Parkinson’s disease followed by a diagnosis of MSA (multiple system atrophy), with a brief foray into amyloidosis, and then back out to LBD (Lewy Body Dementia). Can I have a drink?
We kinda, sorta got dumped by our original neurologist last fall, but he did refer us to another neurologist that had extensive experience and exposure to other avenues of neurological disorders and movement disorders, testing, and research. Can you say neurologist number three?
The lumbar spine testing led us to where we are now, in conjunction with the current list of symptoms. The lumbar spine testing showed an abundance of proteins in the cerebral spinal fluid, Lewy Body proteins. Lewy Body proteins develop in the nerve cells of the brain and affect thinking, memory, and movement/motor control. If you remember back to our initial post, MSA has very similar symptoms as both of these disorders are part of the Parkinsonism umbrella.
With the list of cross-over symptoms including movement disorder (the hunched, coat hanger pain with the shuffle gait), autonomic nervous system challenges (blood pressure, pulse and digestive issues), cognitivity, sleep challenges, attention challenges, and depression, we’re pretty much still in the same arena, except with the presence of the proteins.
So, where do we go from here, you ask? The path isn’t really much different. We still treat the symptoms, not the disease. Dementia is definitely rearing it’s ugly head as we notice more issues with my love’s thinking process (or lack thereof). The hallucinations have really ramped up over the last few weeks, including hearing voices. It does create for an interesting sleep pattern as I feel the nudge on my arm followed by, “do you hear/see anyone talking?”
We try not to dwell on the stats – life expectancy, on average, is about eight years at the onset of diagnosis. So I ask you, doctors of the neurological persuasion, when exactly should I start the clock?
