Association of Autonomic Dysfunction With Disease Progression and Survival in Parkinson Disease.
Discussion
The main finding of the study is that earlier development of AutD or individual autonomic abnormalities (including orthostatic hypotension, urinary symptoms, upper gastrointestinal tract symptoms, constipation, sweating abnormalities, and erectile dysfunction in males) are independent determinants of more rapid disease progression and shorter survival in patients with PD. The main strength of our study is that all included patients had a pathologically confirmed diagnosis.
Our data highlight the significant proportion of patients with PD and AutD who are misdiagnosed as having multiple system atrophy, meaning that it is likely that many population studies have excluded this subgroup from the analysis.
You bring up a point that is relevant to my experience. Doctors told my mom that her PD could be managed, which suggested this was not a terminal diagnosis.
The truth is, unless you find a way to reverse the neurodegeneration, PD ultimately leads to failure of multiple bodily functions, this is the definition of death.
My autonomic dysfunction was an early indication that I had a neurodegenerative illness [injury] that turned out to be motor neuron disease [ALS].
My mom survived for 25 years with PD, her autonomic dysfunction occured late in her illness, we talked about our symptoms trying to figure out what I had when PD was ruled out.
I watched her slowly decline, when her husbands health also began to fail, she quickly deteriorated and died in December. Often times, couples hang on for each other and I think this was true for her. He has not yet accepted that he is in the terminal phase of his illness and continues to seek medical intervention. Everyone processes their own mortality differently, there is no right or wrong way.
There is a way for doctors to be truthful with people without taking away hope, and violating them by being insensitive to their suffering or giving false hope. The neurologist who diagnosed me was matter of fact, then added "some people recover." I appreciated the candor.
My mom was told that she can live with PD, and she did, but realized at some point that PD is progressive, and it was neurodegeneration that ultimately caused her death, not an unrelated event. I realize that doctors were just managing her symptoms.
I think she could have had a better quality of life if she had done things differently. Would she have made different choices if she had more information? I think so. That's the beauty of HU, the sharing of information so that we all get to make informed choices that can impact our quality of life in a positive way.
Circling back to autonomic dysfunction, it's origin is hypothalamic injury caused by brain trauma; which can be mechanical, such as a concussion; chemical such as cyanide and organophosphate poisoning; or autoimmune such as a tumor.
Autonomic function can be improved and the hypothalamus can be healed. There is hope for improving our quality of life.
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