PSP folks –
Someone named Brenda (“cruzgal”) on the PSP Forum posted* today this document she recently created to give to her mother-in-law’s hired caregivers and facility staff. It describes “PSP symptoms in a nutshell.”
As Brenda’s mother-in-law doesn’t have the dementia form of PSP, Brenda’s document speaks of dementia as not existing in PSP. Current research shows that 54-62% of those with PSP *do* have dementia; this is considered the classic form of PSP that was described by Richardson and Steele. So, I think this is a great document to you if you are not dealing with the dementia form of PSP (the non-dementia form is called PSP-Parkinsonism), or a great basis for a document that can be revised if you are dealing with the dementia form (the dementia form is called Richardson’s Syndrome).
I’ve copied the full text below.
Here’s one note from Brenda:
Italicized portions of this document are directly quoted from and additional information is available at www.psp.org or www.pspinformation.com (Editor’s Note: This website no longer exists)
Robin
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http://forum.psp.org/viewtopic.php?t=7882
PSP SYMPTOMS IN A NUTSHELL
PSP (Progressive Supranuclear Palsy) is a neuro-degenerative brain disease that has no known cause, treatment or cure. It affects the frontal lobe of the brain and the nerve cells that control walking, balance, mobility, vision, speech, and swallowing. Five to six people per 100,000 will develop PSP with approximately 20,000 known cases in the U.S. PSP displays a wide range of symptoms which progressively worsen with time. Symptoms may occur at various stages of the disease and vary widely with each individual patient and with the specific type of PSP the patient has. Typical lifespan after onset of symptoms is 6-10 years, with a reported range of 2-17 years. Cause of death in patients with diagnosed PSP is usually a result of aspiration pneumonia, infections, or injuries resulting from a fall.
COMMON EARLY SYMPTOMS OF PSP
The most common first symptom is loss of balance while walking. This may take the form of unexplained falls or of a stiffness and awkwardness in the walk that can resemble Parkinson’s disease. Other common early symptoms are forgetfulness and changes in personality. The latter can take the form of a loss of interest in ordinary pleasurable activities or increased irritability and cantankerousness. These mental changes are often misinterpreted as depression or even as senility. Less common early symptoms include trouble with eyesight, slurring of speech and mild shaking of the hands. Difficulty driving a car, with several accidents or near misses, is common early in the course of PSP. The exact reason for this problem is not clear.
Some other symptoms that may occur at some point in the disease are fatigue, incontinence, rigidity of the muscles, a softening of the voice, a variance in body temperature and an inability to write clearly. In some cases the patient may exhibit episodes of inhibition and inappropriate behavior. PSP can only be confirmed post-mortem, but once a clinical diagnosis of probable PSP has been made, the patient and family may realize in retrospect that some of the problems the patient had been having for quite a long while were attributable to PSP.
Because of similarities in some of the symptoms, the patient with PSP is often mis-diagnosed as having Alzheimer’s Disease or Parkinson’s Disease or some other neurological disease. PSP is classified, in fact, as a Parkinson’s-Plus disease although there are distinct differences in PSP and Parkinson’s.
LOSS OF BALANCE AND FALLING:
PSP patients are prone to losing their balance and should never be allowed to stand or walk without assistance. Broken bones resulting from a fall complicates the life and care of a patient with PSP so extreme caution should be exercised to prevent falls. A walker is not advised for the patient with PSP unless someone is close behind the patient AT ALL TIMES. Since those with PSP usually fall backwards, a walker could possibly cause further injury in a fall.
Shoes with smooth soles are often better than rubber-soled athletic shoes. In many people with PSP, the gait disorder includes some element of “freezing,” a phenomenon that makes it difficult to lift a foot from the ground to initiate gait. Such people can fall if they move their body before the foot moves. In these cases, a smooth sole could make it easier to slide the first foot forward. Shoes with a lifted heel might also help prevent the backward fall.
While Physical Therapy has not been shown to IMPROVE the symptoms of PSP, it’s important for the patient to get as much exercise and to walk (with assistance) for as long as possible to avoid the muscle atrophy that occurs from lack of use. Extreme caution should be used to prevent the patient from falling and perhaps taking the one escorting him/her along on the fall.
DIFFICULTY SWALLOWING:
The disease impairs the ability to swallow (dysphagia) and the greatest risk is with thin liquids which may be aspirated into the lungs. This can eventually cause aspiration pneumonia, the most common cause of death in patients with PSP. Tucking the chin when swallowing liquids may help prevent choking in the earlier stages of the disease and thickened liquids are recommended as the disease progresses. Pills may need to be crushed and placed in applesauce or similar food.
Patients with PSP are prone to “mouth stuffing” and “rapid drinking” which often causes them to choke. Small bites should be taken and each bite should be swallowed before taking another bite or drink. They may also get choked from improper chewing, from hard -to-chew foods such as steak, or from “mixed-textured” foods containing both liquid and solids. Foods such as vegetable soup, cold cereal and uncooked dairy products should be avoided. Patients may also choke on their own saliva. Carbonated beverages and sparkling water may assist in cutting the phlegm that accumulates in the throat. As the disease progresses, pureed food may become necessary and some patients may eventually require surgical insertion of a feeding tube (peg) although clinical studies have not shown that a feeding tube will completely eliminate the possibility of aspirated pneumonia.
VISUAL PROBLEMS:
In most cases, the visual problem is at least as important as the walking difficulty, though it does not appear, on average, until 3 to 5 years after the walking problem. Because the main difficulty with the eyes is in aiming them properly, reading often becomes difficult. The patient finds it hard to shift down to the beginning of the next line automatically after reaching the end of the first line. This is very different from just needing reading glasses. An eye doctor unfamiliar with PSP may be baffled by the patient’s complaint of being unable to read a newspaper despite normal ability to read the individual letters on an eye chart. Some patients have their mild cataracts extracted in a vain effort to relieve such a visual problem.
Yet another eye problem in PSP can be abnormal eyelid movement — either too much or too little. A few patients experience forceful involuntary closing of the eyes for a few seconds or minutes at a time, called blepharospasm. Others have difficulty opening the eyes, even though the lids seem to be relaxed, and will try to use the muscles of the forehead, or even the fingers, in an effort to open the eyelids (apraxia of lid opening). About 20 percent of patients with PSP eventually develop one of these problems. Others, on the contrary, have trouble closing the eyes and blink very little. While about 15 to 25 blinks per minute are normal, people with PSP blink, on average, only about 3 or 4 times per minute. This can allow the eyes to become irritated. They often react by producing extra tears, which, in itself, can become annoying.
The eyes often become glazed and wide-eyed, giving the patient a startled look or the appearance of “staring into space”. Involuntary closing of the eyes is also a frequent occurrence. It becomes increasingly difficult for the patient to read or to watch TV. Dinner plates may need to be placed on a “riser” in order to bring the plate into the patient’s line of sight.
SPEECH:
A patient with PSP frequently repeats the same word or phases involuntarily (palilalia) and stuttering may also occur as well as “parroting” phrases or questions spoken by another person. It may take awhile for the patient to form a sentence, so it’s important to give him/her time to speak without interruption. An erroneous impression of senility or dementia can be created by the PSP patient’s combination of speech difficulty, slight forgetfulness, slow (albeit accurate) mental responses, personality change, apathy and poor eye contact during conversation.
BRAIN FUNCTIONS:
The PSP patient usually remains alert to his or her surroundings and understands all that is going on around him/her. Memory is not affected as in Alzheimer’s patients, but may falter at times, especially when trying to speak and the right words won’t come. As the disease progresses it becomes quite difficult for the patient to have a “normal” conversation and great patience is required on the part of the listener.
Many PSP patients display signs of mild dementia, but in some cases the slowness of speech and difficulty communicating only gives the impression of dementia. Other patients, especially those with a specific type of PSP, develop actual and more severe dementia. The dementia of PSP is characterized by slowed thought and difficulty synthesizing several different ideas into a new idea or plan.
Cognitive reasoning is affected and PSP patients may not be aware of what they should or should not do in their own best interest. They may “THINK” they can walk by themselves or that they don’t need help doing certain things even when there’s a risk involved. All precautions available should be used to protect the patient from their own poor judgment.
No treatment or cure is currently available for PSP, but medications may be available to treat some of the symptoms such as dry eyes or depression. A doctor familiar with this disease should be consulted for recommendations of these medications as PSP patients often experience adverse effects from certain drugs.
NOTE: Italicized portions of this document are directly quoted from and additional information is available at www.psp.org or www.pspinformation.com (Editor’s Note: This website no longer exists)
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March 2009
Information compiled and written by Brenda Cyrus, Fort Smith, AR
Daughter-in-law of PwPSP, Elizabeth, diagnosed Sept. 2008, symptoms since 2005.