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Until I left for college, my family and I visited my grandmother several times a week. I did not like visiting my grandmother. Seeing her is depressing. My grandmother doesn't live in her own home anymore. She currently resides in a nursing home. My grandmother is sick, and it is so sad to see her in her present state, when only a few years ago she was full of life, and would take me shopping or to the amusement park. She was such an active person. She went "a mile a minute", and nothing could stop her, but now, she has slowed and she can't walk even when she tries her best. I talk to her, and she is slow to respond. She can't keep her eyes open all of the time, due to her frequent blepharospasms. At first we thought that she was not paying attention, but later, we found that this random closing of the eye was just another part of her disease. She has trouble swallowing food and drink, and my family is debating whether or not she needs a gastrostomy tube. I love my grandmother very much, and worry about her constantly. She has Progressive Supranuclear Palsy (PSP).You've never heard of Progressive Supranuclear Palsy, huh? I am not surprised. Progressive Supranuclear Palsy is rare - only about 4-5 percent as common as Parkinsons disease (Golbe 00). I had never heard of PSP either, until my grandmother was diagnosed with it in 17. It is often misdiagnosed as Parkinson's, as in the case of my grandmother, who was misdiagnosed as having Parkinson's when she visited the Mayo clinic in Arizona in the summer of 15 (Golbe 00). She was then treated for Parkinson's disease. In fact, PSP may not clearly emerge until several years following the initial visit to the neurologist (Tetrud 00). It turns out that the most common first symptom, occurring, on average, in the 60s, is loss of balance while walking (Golbe 00). These losses of balance may take the form of unexplained falls or of a stiffness and awkwardness in the walk that can resemble Parkinsons disease (Golbe 00). Sometimes the falls are described by the person experiencing them as attacks of dizziness (Golbe 00). A few years after my grandmother's Parkinson's diagnosis, she did in fact have these "dizzy spells", as she called them, and it was after several repeated falls that she was finally referred to a neurologist in 17. After a few more falls, my family made the difficult decision to have my grandmother use a wheelchair. At first, she was depressed by having to use the wheelchair, but eventually she realized that she was safer in a wheelchair. Other common early symptoms of PSP are forgetfulness and changes in personality, which she also exhibited (Golbe 00).Progressive Supranuclear Palsy is a brain disorder involving the death of neurons in areas of the brain called basal ganglia and the brain stem, which are important for controlling movement, balance, vision, swallowing, and speech (Introduction 00). Progressive Supranuclear Palsy may sound complicated, but when broken down, this disease is broken down word by word, it is rather simple to grasp. The "progressive" part of the diseases name stems from the fact that its symptoms get slowly worse over time, from diagnosis to late stages, typically three to ten years (Facts 00). The term "supranuclear" refers to the nature of the eye problem in PSP (Golbe 00). People with PSP are unable to aim their eyes properly (Golbe 00). Due to the damage of the brain, patients with PSP are unable to move their eyes down without much difficulty (Solomon 00). Most of the problems with eye movement, as seen in other diseases, arise from the nuclei surrounding the brainstem, where the impulses responsible for signaling eye movement originate, but in PSP, the problem lies in parts of the brain that control eye movement (Golbe 00). These "higher" control areas are what the prefix "supra" in "supranuclear" refers to (Golbe 00). The musculature of the eyes loses its ability to move, hence the "palsy", or paralysis (Facts 00).With the further degeneration of the brainstem, other symptoms are brought about, such as the inability to swallow, and impaired speech. One of the most difficult aspects of visiting my grandmother in the nursing home is not being able to understand what my grandmother is trying to say. Many times, she will talk me, and all I can do is smile and nod I just can't understand her. She mumbles. She knows what she is trying to say, but all that comes out of her mouth are slurred jumbles of words. This speech impediment is typical of PSP, and it is often referred to as "spastic" or "ataxic" speech (Golbe 00). PSP speech has an irregular, explosive quality or a drunken quality (Golbe 00). The speech problem is also related to my grandmothers inhibited ability to swallow solid food. It turns out that the ability to swallow is also controlled by the basal area of the brain, and when it is damaged, the ability to swallow is limited. My grandmother can swallow only a few types of solid food, and most every that has any real substance other than cooked vegetables has to be pureed. My family has just recently discovered that my grandmother's ability to swallow anything will be severely impaired, and her chances of choking on food and developing pneumonia from inhaling food will increase. The big decision in our family right now is whether or not we should have a gastrostomy tube placed in her. A gastrostomy tube is in a sense a false esophagus that is made out of tubing that connects the stomach to the outside of the abdomen, allowing for the safe transport of pureed food into the stomach. The installation of a gastrostomy tube is often perceived as an ominous sign of disease progression, but a gastrostomy tube will improve a swallowing-impaired patients quality of life because it allows for adequate nutrition, minimizes the chance of aspiration pneumonia (Tetrud 00).
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Up to this point, I have mainly concentrated on the physical symptoms of progressive supranuclear palsy, but with these physical symptoms, several psychological symptoms arise, such as slowed thought and difficulty in the synthesis of several ideas into a new idea or plan, and dementia (Golbe). The most striking of the mental symptoms, dementia is one of the more difficult and disturbing aspects of PSP. The dementia surrounding PSP, according to Golbe, does not feature the memory problem apparent in Alzheimer's disease, but this conclusion contradicts my own experiences with my grandmother. Every time I visit my grandma, she always has to be reminded that one of her deceased relatives is died several years ago. She has also had numerous hallucinations including "bodiless men", "the abortion of her baby while in the hospital for surgery", and my grandfather's "homosexual African lovers". She is sometimes violent during her little hallucinations, and she sometimes scares me. I think some of her dementia stems from some of the drugs that she is on to treat her PSP, but I wonder how much of the dementia is actually caused by PSP.
Progressive Supranuclear Palsy is not a cheap "over-the-counter" disease. My grandmother takes a large amount of medications as treatment for PSP. She currently takes Requip, DSS/Casanthranil, Enulose, Lisinopril, Zyprexa, Carbo/Levo (Sinemet), Fosamax, Clonazepam, Zoloft, and Seroquel (C.R. Patrick 00 and C.T. Patrick 00). The prices of her medications, per month range from $1.77 to $64.88 (Burk 00). The total cost of her medications annually is $10,58.88, without insurance (Burk 00). Luckily, insurance covers much of the cost of medication in our country, at least. In third world countries, where medical care is poor, people have to pay face value for medication. In Europe, people have the Progressive Supranuclear Palsy of Europe, which raises money for the continued research of PSP (Introduction 00). Another cost that must be factored into the total cost of PSP is nursing home prices. The nursing home that my grandmother is in costs $4,500 a month, or $54,000 per year (C.T. Patrick 00). There are cheaper nursing homes in the country, but with a decrease in price, there also comes a decrease in care. My grandmother's case of PSP alone costs $64,58.88 without insurance.
Not only does Progressive Supranuclear Palsy have such an outrageous monetary price, it also has a high emotional price for the patient as well as for the family of the patient. To have to see my grandmother in a wheelchair in a nursing home, unable to fully communicate, walk, eat, and sleep tears me apart. It is so hard to see a loved one in such pitiful condition after a relatively short period of time. As much as it hurts me to have to see my grandmother with PSP, I can only imagine what she must feel. I must be hard to have to live in a place other than your home, let alone a place filled with sick and senile elderly people. The dementia associated with PSP leaves its victims confused and in freakish delusional states. In a conversation with my grandmother one day, she said, "I don't know why this happened to me…but I go on. We just have to deal with it [the PSP]." Although her condition is depressing, I still find hope in my grandmother's determination her will to live. Works Cite.Burk, Michelle P. "Rx prices." Email to Andy Patrick. 16 Oct. 00."Facts About Progressive Supranuclear Palsy…PSP." Society for Progressive Supranuclear Palsy. 1 Oct. 00.http//www.psp.org/media/pdf/facts_about.pdf.Golbe, Lawrence I. "Progressive Supranuclear Palsy Some Answers..
Society for Progressive Supranuclear Palsy. 1 Oct. 00.http//www.psp.org/media/pdf/some_answers.pdf.."Introduction." Progressive Supranuclear Palsy (PSP-Europe) Association. 16 Oct. 00 http//www.pspeur.org.Patrick, Charles R. "Progressive Supranuclear Palsy." Email to Andy Patrick. 1 Oct. 00.Patrick, Charles T. "Progressive Supranuclear Palsy." Email to Andy Patrick. 1 Oct. 00.Solomon, David. "Eye Movement Problems In PSP." Society for Progressive Supranuclear Palsy. 1 Oct. 00.http//www.psp.org/media/pdf/eye_movement.pdf.Tetrud, James. "Challenges In The Management Of PSP Difficult Decisions." Society for Progressive Supranuclear Palsy. 1 Oct. 00 http//www.psp.org/media/pdf/difficult_decisions.pdf.
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