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| My Dad and his granddaughters on his birthday this year... We are luckier than most that he is still with us. But its just not the same. I miss my Dad so very much and am angry at this disease for robbing us of our time together. |
He is only 71 years old and should by all accounts be annoying me still and giving his grandkids a hard time. We should be sharing a beer whilst watching the sunset and he should be driving my Mom insane... Instead we are all sitting around watching and waiting.
So next time you are out and see someone acting "differently", someone who might need assistance walking or eating. Someone who may wear sunglasses inside or who make seem drunk when he talks, don't judge. Try and be understanding.
What is PSP?
Progressive supranuclear palsy (PSP) is a rare brain disorder that causes serious and permanent problems with control of gait and balance. The most obvious sign of the disease is an inability to aim the eyes properly, which occurs because of lesions in the area of the brain that coordinates eye movements. Some individuals describe this effect as a blurring. Affected individuals often show alterations of mood and behavior, including depression and apathy as well as progressive mild dementia.The disorder's long name indicates that the disease begins slowly and continues to get worse (progressive), and causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supranuclear).
PSP was first described as a distinct disorder in 1964, when three scientists published a paper that distinguished the condition from Parkinson's disease. It is sometimes referred to as Steele-Richardson-Olszewski syndrome, reflecting the combined names of the scientists who defined the disorder. Although PSP gets progressively worse, no one dies from PSP itself.
PSP was first described as a distinct disorder in 1964, when three scientists published a paper that distinguished the condition from Parkinson's disease. It is sometimes referred to as Steele-Richardson-Olszewski syndrome, reflecting the combined names of the scientists who defined the disorder. Although PSP gets progressively worse, no one dies from PSP itself.
Symptoms?
The most frequent first symptom of PSP is a loss of balance while walking. Individuals may have unexplained falls or a stiffness and awkwardness in gait. Sometimes the falls are described by the person experiencing them as attacks of dizziness. This often prompts suspicion of an inner ear problem.Other common early symptoms are changes in personality such as a loss of interest in ordinary pleasurable activities or increased irritability, cantankerousness, and forgetfulness. Individuals may suddenly laugh or cry for no apparent reason, they may be apathetic, or they may have occasional angry outbursts, also for no apparent reason. It must be emphasized that the pattern of signs and symptoms can be quite different from person to person.
As the disease progresses, most people will begin to develop a blurring of vision and problems controlling eye movement. In fact, eye problems usually offer the first definitive clue that PSP is the proper diagnosis. Individuals affected by PSP have trouble voluntarily shifting their gaze downward, and also can have trouble controlling their eyelids. This can lead to involuntary closing of the eyes, prolonged or infrequent blinking, or difficulty in opening the eyes.
Another common visual problem is an inability to maintain eye contact during a conversation. This can give the mistaken impression that the person is hostile or uninterested.
Speech usually becomes slurred and swallowing solid foods or liquids can be difficult. In rare cases, some people will notice shaking of the hands.
As the disease progresses, most people will begin to develop a blurring of vision and problems controlling eye movement. In fact, eye problems usually offer the first definitive clue that PSP is the proper diagnosis. Individuals affected by PSP have trouble voluntarily shifting their gaze downward, and also can have trouble controlling their eyelids. This can lead to involuntary closing of the eyes, prolonged or infrequent blinking, or difficulty in opening the eyes.
Another common visual problem is an inability to maintain eye contact during a conversation. This can give the mistaken impression that the person is hostile or uninterested.
Speech usually becomes slurred and swallowing solid foods or liquids can be difficult. In rare cases, some people will notice shaking of the hands.
Prognosis?
PSP gets progressively worse but is not itself directly life-threatening. It does, however, predispose individuals to serious complications such as pneumonia secondary to difficulty in swallowing (dysphagia). The most common complications are choking and pneumonia, head injury, and fractures caused by falls. The most common cause of death is pneumonia. With good attention to medical and nutritional needs, it is possible for most individuals with PSP to live a decade or more after the first symptoms of the disease.To find out more check out these links:
http://www.ninds.nih.gov/disorders/psp/detail_psp.htm
http://www.pspeur.org/care_and_support/what_is_psp/
http://en.wikipedia.org/wiki/Progressive_supranuclear_palsy
Mental illnesses are unfair and rob patient's and their families of precious moments and time. I am angry at this disease and at the governments around the world who are not putting enough money into researching these types of diseases.
