Progressive Supranuclear Palsy (PSP) is a rare brain disease which affects 5 to 6 people in 100,000. My father was one of them. He died last year.
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Last year, my father passed away. He suffered from Progressive Supranuclear Palsy (PSP). Always independent and a very strong and active person, PSP slowly took that away. It was heartbreaking to watch my hero, who had always been there for all of us, need help with the most mundane and essential tasks: walking, dressing, eating. Through everything--the physical, occupational, and voice therapy; the medications, the tests, the drastic changes to his lifestyle--he maintained a brave face, a smiling face. Heroic to the end.
As often happens to PSP sufferers, he was initially misdiagnosed with Parkinson's Disease, which is in the same family of neurodegenerative diseases along with Alzheimer's and Lou Gehrig disease. Neurodegenerative diseases are diseases in which brain cells cumulatively bread down for unclear reasons. PSP affects cells that control walking, balance, mobility, vision, speech, swallowing, and behavior.
The medications prescribed for Parkinson's Disease sometimes help mitigate the symptoms of PSP, but sometimes the patient gets more of the side effect of those medications and less of the cure. This was the case with my father.
Only 5 to 6 people per 100,000 have PSP, but only about 1/3 of these have received the correct diagnosis. It is slightly more common in men than women, but PSP has no know geographical, occupational, or racial preference.
WHY HAS NO ONE HEARD OF PSP?
PSP is rare--only about 1% as common as Parkinson's Disease--and because even when it does occur, it is often misdiagnosed. This is gradually changing. As more doctors become familiar with PSP, it will be diagnosed more readily. No one even realized it existed until 1964, when several patients were first described at a national neurology research convention and the disease received its name. In retrospect, at lease 12 cases of PSP had appeared in the medical literature since 1909, but because of its resemblance to Parkinson's disease, no one had recognized it as a distinct disease until the 1960s.
The rarity of PSP is not the only reason it is not widely known. PSP is a bit more common that the ver well-known disease Amyotrophic Lateral Sclerosis (ALS; called Lou Gherig disease in the US and Motor Neuron disease elsewhere). But ALS is easier to diagnose than PSP and affect much younger people in the prime of life. It is unlikely that any of the approximately 4,500 people in the US who have been diagnosed as having progressive supranuclear palsy had ever heard of the disease before. In fact, many patients with PSP report that their family doctors knew nothing about PSP until a neurologist made the diagnosis. Moreover the neurologist probably thought the diagnosis was Parkinson's until several years into the illness. For every person with a diagnosis of PSP, there are 3 with PSP that could be diagnosed if their doctor suspected it and performed the appropriated examination. REcently more and more has appeared in medical journals to help doctors remedy their unfamiliarity with PSP.
WHAT RESEARCH IS BEING DONE?
Research is proceeding in the area of genetics, epidemiology, treatment trials, and molecular studies. CurePSP's genetics program has searched the entire genome for genes related to PSP and corticobasal degeneration (CBD). (Results published in 2011.) In addition to working with researchers at the University of Louisville to study environmental, occupational, and genetic risk factors associated with PSP, CurePSP and other funding agencies are presently sponsoring exciting and promising research into many aspects of PSP, including ways to prevent the brain cells from dying and treatment of the symptoms with drugs, magnetic stimulation, and deep-brain electrical stimulation. Two drug companies are presently running large, formal trials of new medications designed to slow progression of PSP.
Click the following link for an video about PSP, including one patient's personal experience: https://youtu.be/eAlLKni9K9E
For more information, please visit www.psp.org.
Please help find treatments and a cure for PSP.
Thank you!
Information in these sections originally published in CurePSP: A Guide For People Living with PSP, CBD, and Other Atypical Parkinsonian Disorders
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In loving memory of my uncle and godfather.
... to support the pursuit of a cure for this rare and cruel disease in memory of a rare and outstanding human being.
In memory of a great man.
My lovely dear friend Melaina!
Being a friend