|[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]|
|You are not logged in|
This is the post i spoke of earlier i put on my FB page:|
I haven't posted for a few days, been thinking about things and researching a little more. Jim has been diagnosed with LBD (Lewy Body Disease), however, that diagnosis was only on paper. By that I mean it was just for the sake of a diagnosis. Why? The issue being that Jim has different symptoms from ALL of the PD Plus disease, but not ALL fo the symptoms of one. As I went over more research and they "symptoms" of PD plus diseases, it is interesting to me that not one of our docs find Jim "odd". That they really don't get into what he really has.
Let's start with this:
PSP (Progressive Supranuclear Palsy) is a progressive brain disorder, causes problems with gait and balance, inability to move eyes properly (giving a blurring effect), changes in personality (depression, apathy or mild dementia), slowed thinking,reasoning, planning,inappropriate laughing or crying, slurred speech, swallowing issues, masking, muscle spasms and inability to hold urine. Traditional PD meds like Sinemet, do not help.
CBD (Corticobasal degeneration).The initial symptoms of CBD are often stiffness, shakiness, jerkiness, slowness, and clumsiness, in either the upper or lower extremities. Other initial symptoms may include dysphasia (difficulty with speech generation), dysarthria (difficulty with articulation), difficulty controlling the muscles of the face and mouth, or walking and balance difficulties and memory or behavioral problems. It too, is a progressive disease and as it progresses other symptoms occur such as rigidity, tremor,myoclonus (sudden, brief jerky movements),dystonia,including blepharospasm,speech difficulty, memory loss, difficulty planning or executing unrehearsed movements, dementia.
sensory loss, apraxia- "alien hand/limb" phenomenon (difficulty controlling the movements of a limb, which seems to undertake movements on its own, sometimes combined with a feeling that the limb is not one's own). This also does not repsond to typical PD meds.
MSA(Multiple System Atrophy) MSA refers to a set of slowly progressive disorders that affect the central and autonomic nervous systems. MSA may have symptoms that resemble PD. It also may take a form that primarily produces poor coordination and slurred speech, or it may have a mixture of these symptoms. Other symptoms may include breathing and swallowing difficulties, male impotence, constipation, and urinary difficulties.
LBD (Lewy Body Disease/Dementia) LBD is viewed by the Neuro field as either Disease or Dementia, the current trend is disease. Symptoms can range from traditional parkinsonian symptoms, such as bradykinesia, rigidity, tremor, and shuffling gait, to symptoms similar to those of Alzheimer's disease. These symptoms may fluctuate, or wax and wane dramatically. Visual hallucinations may be one of the first symptoms, and patients may suffer from other psychiatric disturbances such as delusions and depression. Cognitive problems also occur early in the course of the disease. Levodopa and other antiparkinsonian medications can help with the motor symptoms of dementia with Lewy bodies, but they may make hallucinations and delusions worse.
All that being said, here is my diagnosis: none of the above.
If i were a research doctor, even if i was a doctor, considering research, I would put Jim on my "A" list for research. Why you ask? All of his symptoms are all of the above, almost, a few haven't crept into our arena yet, hallucinations, delusions and a few "personal" issues haven't anyway. My question is this: Is there another type of Plus disease not found yet OR should we just throw them all in one category?
I say we call this ADAMS (Adams Degenerative Atrophy Multiple Symptomatic),named after it's first discovered patient, is a progressive brain disorder of the central and autonomic nervous system. Symptoms can be similar to those of PD, but, can range from the traditional ( bradykinesia, rigidity, mild tremor) to an elite set of symptoms such as: awkward gait, cognitive issues (not quite dementia), breathing and swallowing issues, gastrointestinal( stomach cramping and gagging), dropsy palsy(unexplained phenomena where everything falls out of hands to the floor), sloooooowed movement, slowed thinking, reasoning and 'splainin, masking, muscle spasms( most frequent when at rest), REM Sleep issues, inappropriate laughing or crying, slurred speech, dysphasia, dysarthria, dystonia (including blepharospasm characterized by increased blinking and involuntary eyelid closure), Apraxia and Myoclonus. Hallucinations, delusions, incontinence and erectile disfunction have yet to be determined, but could be included in the latter stage.
So there you have it, Phase II of my research complete. We now have a new Parkinson's Plus disease; ADAMS. To this point, no levadopa/carbidopa drugs have been introduced, however, dopamine agonists and dementia drugs have served this patient well to this point: as well as can be expected for a disease not yet known to the pharmaceutical or neurological communities.
Very well researched and stated. I may have your second instance of ADAMS as my husband also exhibits a combo of each of the known Parkinson's and Parkinson's related diseases. Two things seem to disqualify him from the "norm" for these "plus" syndromes--Sinemet has helped but it's effectiveness is definitely waning and he has no tremor. Everything else seems spot-on.|
What a mystery this disease presents.