Some of you met Loretta Mazorra at the CurePSP conference in Los Angeles. She spoke about her husband’s struggle to get a diagnosis of progressive supranuclear palsy (PSP). I believe her husband was an MD, and it seemed that the medical community did not serve him well. Loretta is a retired geriatric nurse practitioner.
Loretta, along with a nursing colleague, have published an article on PSP in the Journal of Gerontological Nursing.
Quite a bit of the article is about Mr. A, with PSP, and Mrs. A, his wife. The couple took advantage of lots of the support resources available — local support group (in LA), PSP Forum, and the monthly telephone support meetings. I don’t believe Mr. A’s brain was donated upon his death as we are not told that the diagnosis was confirmed upon brain autopsy. (He didn’t have all of the symptoms of “classic PSP” or the Richardson’s syndrome type as he did not seem to have cognitive impairment.)
The abstract to the article is copied below.
Robin
Journal of Gerontological Nursing. 2012 Feb 15:1-4. [Epub ahead of print]
Progressive Supranuclear Palsy.
Mazorra L, Cadogan MP.
Abstract
Progressive supranuclear palsy (PSP) is the second-most-common parkinsonian neurodegenerative disorder following Parkinson’s disease. Although PSP was first identified clinically more than 40 years ago, it remains poorly recognized and underdiagnosed. Using an individual example, this article describes the epidemiology, neuropathology, clinical course, supportive management strategies, and resources for patients with PSP and their families.
PubMed ID#: 22329395 (see pubmed.gov for this short abstract only)