PSP folks -
This recently-published letter to the editor describes "characteristic constant groaning" in late-stage PSP. The authors, members of a top PSP researcher team in the UK, believe that the constant groaning is "often misinterpreted as due to pain."
They state: "We have seen this phenomenon in at least 4 patients in the last two years. All of them presented with constant groaning only when they were in the advanced stages having lost ambulation and being confined to a wheelchair (equal to stage V). This phenomenon is very distressing for their caregivers..."
Indeed, over the last 7 years that I've been learning about PSP, many, many caregivers report this symptom of constant groaning on the PSP Forum and elsewhere. Sometimes it's described as growling, moaning, or humming. I have read many guesses over the years as to why those with PSP do this including clearing the throat, warming up the throat before trying to speak, wanting to stay involved in the conversation, expressing a complaint about something, and comforting oneself.
My father (atuopsy-confirmed PSP) had what we called the "moanin' and groanin" symptom but it was NOT limited to late-stage PSP for him. He groaned for the last 18 months or so of his life. Sometimes it was very loud, and I'd ask him to keep it down a bit; he was able to adjust the volume. Or I'd put my hand back and forth over his mouth so that the sound alternated from loud to muffled; that would make Dad laugh and that stopped the moaning for a short while. Sometimes I'd moan along with him, and found it physically very hard to do for as long as he could do it for. For him, it started as a means of expressing a complaint. Later, it turned into something he did seemingly without a purpose. I'd call him the "ole groaner"; that would get a laugh (when he could laugh).
The authors state: "[The] groaning in PSP can be seen as analogous to other 'noise-making' phenomena which have been described in patients with Alzheimer’s disease, vascular dementia and frontotemporal dementia, such as persistent screaming, perseverative vocalization, continuous chattering, muttering, etc., all together characterized as 'inappropriate vocalization, due to frontal lobe damage or interruption of subcortical circuits'. What makes this groaning so characteristic of PSP is the combination of the characteristic spastic-hypokinetic dysarthria with perseverative vocalization due to frontal disinhibition..."
I've only seen it briefly mentioned in one medical journal article a few years ago (also authored by members of the UK team). Now, this is quite a bit of attention given to one little-discussed symptom.
I've copied the citation below.
Parkinsonism and Related Disorders. 2011 May 13. [Epub ahead of print]
Characteristic constant groaning in late stage progressive supranuclear palsy: A case report.
Stamelou M, Rubio-Agusti I, Quinn N, Bhatia K.
Sobell Department of Motor Neuroscience and Movement Disorders, Institute of Neurology, UCL, London, United Kingdom; Department of Neurology, Philipps University, Marburg, Germany.
PubMed ID#: 21571571 (see pubmed.gov for this citation only)