Dyskinesia of the diaphragm is what he suffers from. The area below his rib cage seizes, moving the t-shirt that covers him, I think of a belly dancer's abdomen and wonder whether the doctor will lift the t- shirt. The pulling can get so intense he buckles over, while sitting. He was diagnosed only two years ago, and the disease affects both sides of the body. Dyskinesia affects both hands, and they move spontaneously while he sits in the examination room. Amantadine helps the dyskinesia and he's been without it since Sunday.
As the doctor examines the patient he notes the dark freckles that cover the area from the ankles up towards the knee. It's a side effect of Amantadine. In lighter skinned people the color appears reddish- purple. Since he's been without the medication the swelling in the feet has diminished.
The doctor recommends rotigotine and the clinical coordinator goes to search for samples. He explains to the daughter and patient what he would like to try- diminish the Sinemet while adding rotigotine, to see whether the new combination will help eliminate the excess movements. As the physician explains he writes the steps down on a sheet of paper he discovered in the printer.
This patient is almost floating. She enters and sits and speaks with the coordinator mentioning the book she recommends to all with a relative or spouse with PD, but can't remember the title. She wears green patterned long shorts and a yellow shirt. Her glasses sit on her nose and her skin is pale and clear and a hint of pink covers her cheeks. In her animated speech she kicks her legs out from below the chair.
The doctor searches the computer for the note he dictated last, while she speaks. There was a time when she fell into a fit of depression. She had reached fifty, got divorced and her children were away. 'You have to dig yourself out, anyway you can.' She is doing much better these days and would feel even better if she didn't have to spend $485. every month on the Neupro patch she acquires from Canada. This month she called twelve pharmacies before finding the medication at the thirteenth. They gave her free shipping.
The doctor encourages her, telling her she looks very well. She's had the illness for fifteen years and now sees symptoms of the illness on her left side. She confides she has been living with her boyfriend for the past eleven years. He is a calming influence and doesn't mind waiting until her medications are working, to leave the house.
When the patient has left, the doctor comments he has seen her for a long time. He remembers the husband who was Italian and reminded him of a mobster, wearing a baseball hat and a large belly. When I leave I note her new partner; a tanned fit man also wearing a ball cap.
Thursday, April 16, 2009
Monday, April 13, 2009
Linen
A white blouse, natural undyed linen skirt and huarache sandals; the patient's appearance hints at affluent comfort. Her height, shoulder length white hair and the pleasant proportions of her face require the attention of those around her. Making eye contact with those passing in the hall, her facial expression does not change. Dyskinesia gently rocks her head from side to side. The husband is shorter and rounder. Her legs are long, perhaps a model's legs in younger years.
The doctor inquires into her health, commenting on the movements of the head. He has never seen her so mobile. They are in Sun City now, their winter place. But New York beckons. Their return North means physical therapy with a previous therapist who worked on her neck and shoulder. Years ago a surgeon placed metal plates to stabilize the cervical vertebrae of the neck, but the excess motion of dyskinesia creates pain that moves through her shoulder and down the left arm. The doctor comments deep brain stimulation can readily improve the unwanted movements. She comments she takes a blood thinner, Coumadin and avoids green leafy vegetables for their wealth of vitamin K- a blood coagulator. No, surgery is not an option for her.
As the doctor types information into the computer system the pace of his words slow. She reaches into her bag for the diary, where she has recorded her physical condition for the past month. There are days when she froze repeatedly, other days when she was "on" and forgot to take the medication. The doctor re-emphasizes the times when symptoms are known to worsen; with stress, any colds or flu, dental work...From the occurrence of movements and the time since the last pills the physician deduces she suffers from peak dose dyskinesia. If she cut back her dose a bit, relied more on agents that prolong dopamine's affect, or spaced the doses out more through the day she might experience less dyskinesia. The husband shakes his head, commenting a large party is approaching and his wife worries.
The doctor inquires into her health, commenting on the movements of the head. He has never seen her so mobile. They are in Sun City now, their winter place. But New York beckons. Their return North means physical therapy with a previous therapist who worked on her neck and shoulder. Years ago a surgeon placed metal plates to stabilize the cervical vertebrae of the neck, but the excess motion of dyskinesia creates pain that moves through her shoulder and down the left arm. The doctor comments deep brain stimulation can readily improve the unwanted movements. She comments she takes a blood thinner, Coumadin and avoids green leafy vegetables for their wealth of vitamin K- a blood coagulator. No, surgery is not an option for her.
As the doctor types information into the computer system the pace of his words slow. She reaches into her bag for the diary, where she has recorded her physical condition for the past month. There are days when she froze repeatedly, other days when she was "on" and forgot to take the medication. The doctor re-emphasizes the times when symptoms are known to worsen; with stress, any colds or flu, dental work...From the occurrence of movements and the time since the last pills the physician deduces she suffers from peak dose dyskinesia. If she cut back her dose a bit, relied more on agents that prolong dopamine's affect, or spaced the doses out more through the day she might experience less dyskinesia. The husband shakes his head, commenting a large party is approaching and his wife worries.
Thursday, April 2, 2009
Undaunted
The patient begins explaining as soon as the doctor sits and the list is long. He thinks he's always had a tremor of the hands but now he thinks it may be worse; sometimes he has troubling controlling the mouse on the computer so the cursor sprints across the screen. He has a low body temperature, usually about 96 degrees. Another autonomic sign is erectile dysfunction..
On examination the doctor finds some rigidity in the muscles of the right arm, a hint of rigidity in the left arm but none in the wrists. His gait is fluid, with an arm swing. Facial expressions are complete. His eye movements are full, but then he has only one eye; he lost the left one when he was seven, when he accidentally stuck a knife in it. He was also hit by a car and spent a year in the hospital trying to acquire appropriate healing of the left tibia- leg bone. As a child he watched his brother die when he had a seizure and never recovered. His father died before age thirty-five and two of the patient's daughters also died. Yet he is not depressed, he's an optimist. We laugh. So much death and he is undaunted.
He is a working engineer, and he's past retirement age, at 72. Traveling he uses his Irish passport; in Libya they have negative associations about Americans and he travels a lot; India, Northern Africa... He speaks French, some Arabic, Spanish, some Italian and he used to speak Gaelic.
He worries about his enlarging waistline, and the doctor asks him whether he has had his thyroid tested. He admits the skin of his arms gets very dry, unless he uses lotion his skin flakes like the scales of a fish.
The doctor explains a study he is in which seeks a biomarker for the progression of Parkinson's disease. The patient is a wonderful candidate because he is early in the disease process, if he has Parkinson's. The only way to be sure about the diagnosis and whether he has a deficit of dopamine, is to gauge the response to levodopa.. Yet the doctor hesitates to give him medications when he functions so well, choosing instead to give him a drug thought to delay onset of symptoms, Selegiline. A prescription for physical therapy will help him form an exercise routine to keep him active.
On examination the doctor finds some rigidity in the muscles of the right arm, a hint of rigidity in the left arm but none in the wrists. His gait is fluid, with an arm swing. Facial expressions are complete. His eye movements are full, but then he has only one eye; he lost the left one when he was seven, when he accidentally stuck a knife in it. He was also hit by a car and spent a year in the hospital trying to acquire appropriate healing of the left tibia- leg bone. As a child he watched his brother die when he had a seizure and never recovered. His father died before age thirty-five and two of the patient's daughters also died. Yet he is not depressed, he's an optimist. We laugh. So much death and he is undaunted.
He is a working engineer, and he's past retirement age, at 72. Traveling he uses his Irish passport; in Libya they have negative associations about Americans and he travels a lot; India, Northern Africa... He speaks French, some Arabic, Spanish, some Italian and he used to speak Gaelic.
He worries about his enlarging waistline, and the doctor asks him whether he has had his thyroid tested. He admits the skin of his arms gets very dry, unless he uses lotion his skin flakes like the scales of a fish.
The doctor explains a study he is in which seeks a biomarker for the progression of Parkinson's disease. The patient is a wonderful candidate because he is early in the disease process, if he has Parkinson's. The only way to be sure about the diagnosis and whether he has a deficit of dopamine, is to gauge the response to levodopa.. Yet the doctor hesitates to give him medications when he functions so well, choosing instead to give him a drug thought to delay onset of symptoms, Selegiline. A prescription for physical therapy will help him form an exercise routine to keep him active.
Friday, March 27, 2009
Shakes and Pain
Six month follow- ups help the doctor and patient stay on top of shifting symptoms, though more frequent appointments are possible. The doctor has said he likes movement disorders because there are no emergencies. Though the first incident of freezing may feel catastrophic to the patient, it passes. They are bumps in the road. Sometimes the journey is lightened by sharing it.
The Parkinson's disease coordinator speaks with the patient about attending possible support group meetings in his area. He responds, stating not all patients want to talk about their problems. Not deterred, she explains the sessions will be run according to group preference. Some people may want lectures, others may just want the social time.
The shooting pain in the left knee is new and it worries him. It never occurs when he's doing Tai chi and it moves up, not down, as the doctor would prefer. Pain moving downward may emanate from the spine, a bony prominence can easily impinge on the fibers of a nerve, sending scintillating pain down through the leg. That's not it. This is pain moving up towards the thigh and it's fast, not throbbing and deep as the pain patients with PD describe. Both his mother and father are diabetic...The patient climbs onto the examination table and the physician tries to replicate the sensation. Both legs have bruises at the lower mid- shin. The tightness of the muscles in the patient's legs is extreme; the doctor comments he would like him to continue with physical therapy.
Parkinson's disease in this patient is evident in the constant tremor of his hands. Six months ago, it was not as prominent as it is today. He describes shaving, his right hand wavering towards his cheek. The doctor recommends wearing wrist weights to dampen the movements, the patient nods. Tremor is one of the hardest symptoms to suppress, and he takes a distinct drug to soften the constant shaking. Yet he walks well, with head and shoulders erect, an arms swing, and ample step size.
The Parkinson's disease coordinator speaks with the patient about attending possible support group meetings in his area. He responds, stating not all patients want to talk about their problems. Not deterred, she explains the sessions will be run according to group preference. Some people may want lectures, others may just want the social time.
The shooting pain in the left knee is new and it worries him. It never occurs when he's doing Tai chi and it moves up, not down, as the doctor would prefer. Pain moving downward may emanate from the spine, a bony prominence can easily impinge on the fibers of a nerve, sending scintillating pain down through the leg. That's not it. This is pain moving up towards the thigh and it's fast, not throbbing and deep as the pain patients with PD describe. Both his mother and father are diabetic...The patient climbs onto the examination table and the physician tries to replicate the sensation. Both legs have bruises at the lower mid- shin. The tightness of the muscles in the patient's legs is extreme; the doctor comments he would like him to continue with physical therapy.
Parkinson's disease in this patient is evident in the constant tremor of his hands. Six months ago, it was not as prominent as it is today. He describes shaving, his right hand wavering towards his cheek. The doctor recommends wearing wrist weights to dampen the movements, the patient nods. Tremor is one of the hardest symptoms to suppress, and he takes a distinct drug to soften the constant shaking. Yet he walks well, with head and shoulders erect, an arms swing, and ample step size.
Thursday, March 19, 2009
Test Pilot
A German patient and his Austrian wife have recently moved from Iowa, and need a new neurologist. His voice resonates in the small room with only a hint of German lilt left. He has the voice for radio, but he is a test pilot. The doctor is in education mode conferring to the patient all things related to Parkinson's and discusses the personality type others have given to the stereotypical sufferer. Well controlled, averse to adventure, given to detail and methodical work, the patient admits that describes himself.
The wife describes the onset of symptoms a few years ago; trembling in a hand that in time involved the foot as well. Today there is little evidence of any symptom. The doctor feels some cog- wheel rigidity in the muscles at the elbow joint on the left side otherwise the patient's symptoms are very well disguised by medications- Mirapex and Sinemet. The movement disorder physician commends the patient's management, he is doing the right things- exercising daily... He would add something thought to slow illness- perhaps coenzyme Q10 or deprenyl.
The doctor conducts a physical exam. Performing the finger to nose task, first with the right hand and then left, I note the patient's hands. His skin is taught and smooth, unlined and young- looking. He is in his sixties and he has the hands of a young man. The wife has skin appropriate to someone of her age, and a flare for fashion evident in pale pink clogs with an open toe and well- cut red hair. She is un-intimidated by the doctor and presses him on why he speaks so much of animal research.
The patient's gait is flawless and his arm swing full and loose. 'Maybe I don't have PD...' the patient comments as the physician emphasizes how well his symptoms are covered. The doctor doesn't give the comment any reply. All witnessed the wife mimicking the tremor of the hand, and how the movement eventually affected the left foot. If he doesn't have Parkinson's he has something close enough.
The wife describes the onset of symptoms a few years ago; trembling in a hand that in time involved the foot as well. Today there is little evidence of any symptom. The doctor feels some cog- wheel rigidity in the muscles at the elbow joint on the left side otherwise the patient's symptoms are very well disguised by medications- Mirapex and Sinemet. The movement disorder physician commends the patient's management, he is doing the right things- exercising daily... He would add something thought to slow illness- perhaps coenzyme Q10 or deprenyl.
The doctor conducts a physical exam. Performing the finger to nose task, first with the right hand and then left, I note the patient's hands. His skin is taught and smooth, unlined and young- looking. He is in his sixties and he has the hands of a young man. The wife has skin appropriate to someone of her age, and a flare for fashion evident in pale pink clogs with an open toe and well- cut red hair. She is un-intimidated by the doctor and presses him on why he speaks so much of animal research.
The patient's gait is flawless and his arm swing full and loose. 'Maybe I don't have PD...' the patient comments as the physician emphasizes how well his symptoms are covered. The doctor doesn't give the comment any reply. All witnessed the wife mimicking the tremor of the hand, and how the movement eventually affected the left foot. If he doesn't have Parkinson's he has something close enough.
Thursday, March 12, 2009
Tied In
The patient, a former internal medicine physician sits in a standard wheelchair, his wife on a yellow plastic seat at his right. The movement disorder doctor arrives as the medical student asks the principle reason for the visit. There are no other seats in the small hot room. I sit on the red hazardous waste garbage, an administrator hoping to learn the issues of Parkinson's is already standing. The Dr. stands, wearing a woolen- looking jacket leaning against the examination table until the soft voice of the patient forces him to relocate the wife's bag. He sits much closer in another yellow chair. The patient's words are so hard to wait for, he twists in his seat while the syllables are freed from his stuck mouth.
Hallucinations are what brings them in. He sees two or sometimes three women caring for him; the wife gives no other specifics. She doesn't define what she means by caring. Sometimes he hallucinates seeing his wife. How he knows the visions are hallucinations is murky; he doesn't reach out and try and touch them, he just knows they aren't real...
The doctor conveys REM sleep interrupts into daylight hours when the patient's sleep cycle is fragmented. He's not sleeping enough. The remedy is Seroquel, or the generic quetiapine in the tiniest dose, half of a 25mg pill. Because the prescription is supposed to allow for 6 hours of sleep, the patient will need to wear diapers at night. It may take several nights to find the correct dose needed to provide a six hour sleep window; the patient will need to wear soft restraints tied to hospital bed, to keep him from walking around in a groggy state and falling.
The doctor describes a personal scenario of his own. His mother needed restraints to keep her from walking around at night. A mother's care, and a spouse's care are two different fruits. The doctor proposes the wife tie her husband into his bed, so he will not be able to get up until she unties him in the morning. Restraints and a hospital bed- two items Medicare will pay for, and home health for instructions on how to use the nighttime devices. The wife leans into her husband, speaking softly and clearly.
"A hospital bed, a hospital bed, OK? " She doesn't mention the ties.
Hallucinations are what brings them in. He sees two or sometimes three women caring for him; the wife gives no other specifics. She doesn't define what she means by caring. Sometimes he hallucinates seeing his wife. How he knows the visions are hallucinations is murky; he doesn't reach out and try and touch them, he just knows they aren't real...
The doctor conveys REM sleep interrupts into daylight hours when the patient's sleep cycle is fragmented. He's not sleeping enough. The remedy is Seroquel, or the generic quetiapine in the tiniest dose, half of a 25mg pill. Because the prescription is supposed to allow for 6 hours of sleep, the patient will need to wear diapers at night. It may take several nights to find the correct dose needed to provide a six hour sleep window; the patient will need to wear soft restraints tied to hospital bed, to keep him from walking around in a groggy state and falling.
The doctor describes a personal scenario of his own. His mother needed restraints to keep her from walking around at night. A mother's care, and a spouse's care are two different fruits. The doctor proposes the wife tie her husband into his bed, so he will not be able to get up until she unties him in the morning. Restraints and a hospital bed- two items Medicare will pay for, and home health for instructions on how to use the nighttime devices. The wife leans into her husband, speaking softly and clearly.
"A hospital bed, a hospital bed, OK? " She doesn't mention the ties.
Thursday, February 26, 2009
Hard Times
The sun lights the waiting room but the fluorescents are on overhead anyway. The woman next to me eats Pringles from a long red can as the young couple across the aisle fill in sheets of paperwork on a clipboard. I try not to look at his face; the right side is significantly swollen with a line of black stitches running the length of his nose. He wears his black sweatshirt hood over his head, not wanting to be noticed. A girl with pigtails and shiny black boots ambles around the thighs of an man at the check-in desk. He signs to her, looking down, his lips move in words, repeating the sign again. His hair is grey. He is unshaven, wearing beige linen. As they pass me I notice his daughter's hearing aid is bright green behind her left ear.
The patient appears in the waiting room with his son. His steps tentative, he walks with both arms bent, shuffling and trailing behind his son. The son cuts his mother off, encouraging his father to speak at the beginning of the visit. The father describes a fall in the shower, where he split the head of his humerus. His voice is light, feathery. His face reveals no emotion. The wife takes up the thread as the patient stalls. She is freckled with dark red hair. She speaks adjusting her gaze to the people in the room, describing her husband's last day at work, when he said he couldn't do it anymore. He gave up practicing medicine afraid he'd make a mistake, and a patient would suffer.
They have no health insurance. The spouse is hoping to get a full time position with health benefits in the company where she works, leaving the husband alone at home. With no patients to occupy his mind, a painful arm and limited contact with others, his depression has darkened. The physician behind the desk talks about decompensation; how a urinary tract infection, cold, flu or broken arm will intensify the Parkinson's disease. Pain amplifies the symptoms of PD, making sleep elusive and scarce. Without sleep patients are prone to hallucinate. As he goes through the physical exam, the clinician emphasizes he believes in providing pain medications to patients in pain, it's what the prescription is for. Later, the ailing doctor can wean himself. The right hand of the broken arm is swollen from disuse. The other doctor encourages the patient to use his hand; squeeze a ball, move individual fingers.
He would like to order physical therapy, but he knows the patient has no insurance and no Medicare. He encourages the patient to exercise, perhaps with a stationary bike, citing a recent study where the benefits of exercise on the brain were sizable. The wife gathers the prescriptions to leave, rising from her chair. Her coloring and substantial body mass contrasts sharply with the angular knees that poke from beneath the taupe trousers of her husband. Indeed, he has lost twelve pounds in the two weeks since the last appointment. What will he weigh when he returns?
The patient appears in the waiting room with his son. His steps tentative, he walks with both arms bent, shuffling and trailing behind his son. The son cuts his mother off, encouraging his father to speak at the beginning of the visit. The father describes a fall in the shower, where he split the head of his humerus. His voice is light, feathery. His face reveals no emotion. The wife takes up the thread as the patient stalls. She is freckled with dark red hair. She speaks adjusting her gaze to the people in the room, describing her husband's last day at work, when he said he couldn't do it anymore. He gave up practicing medicine afraid he'd make a mistake, and a patient would suffer.
They have no health insurance. The spouse is hoping to get a full time position with health benefits in the company where she works, leaving the husband alone at home. With no patients to occupy his mind, a painful arm and limited contact with others, his depression has darkened. The physician behind the desk talks about decompensation; how a urinary tract infection, cold, flu or broken arm will intensify the Parkinson's disease. Pain amplifies the symptoms of PD, making sleep elusive and scarce. Without sleep patients are prone to hallucinate. As he goes through the physical exam, the clinician emphasizes he believes in providing pain medications to patients in pain, it's what the prescription is for. Later, the ailing doctor can wean himself. The right hand of the broken arm is swollen from disuse. The other doctor encourages the patient to use his hand; squeeze a ball, move individual fingers.
He would like to order physical therapy, but he knows the patient has no insurance and no Medicare. He encourages the patient to exercise, perhaps with a stationary bike, citing a recent study where the benefits of exercise on the brain were sizable. The wife gathers the prescriptions to leave, rising from her chair. Her coloring and substantial body mass contrasts sharply with the angular knees that poke from beneath the taupe trousers of her husband. Indeed, he has lost twelve pounds in the two weeks since the last appointment. What will he weigh when he returns?
Thursday, February 19, 2009
Searching
The patient brought his wife, copies of MRIs, a DVD of the brain, and multiple copies of his medical records. The doctor of the day took the page listing all his symptoms. He admitted he'd been to several neurologists, Shands Hospital and the Mayo Clinic before arriving in the new examination rooms with the movement disorder specialist, one second year medical student, one undergraduate psychology student and a writer.
The list of symptoms was long. For some reason the first complaints he reported were not typical of PD; a feeling he was ill, that something was wrong. His mind felt clouded. He gave up exercising, believing he shouldn't do the things he used to do. No more rollerblading or riding the bike. He felt his ability to walk was different, compromised. The wife thinks his face has become unexpressive and blank. Maybe the largest problem is the high blood pressure- he takes four medications, and still the nursing staff recorded a diastolic pressure close to 180.
The wife is a nurse and agreed to monitor the blood pressure for a week and report on her findings. The doctor felt reluctant to prescribe medications until he was knowledgeable about the blood pressure and his heart, requesting an MIGB study.
Upon examination, he had no visible resting tremor, though his wife reported his left hand did tremble. With two arms outstretched, a fine shake quivered in the fingers of the left hand. Distracted by trying to pat and turn, pat and turn the right hand, the doctor felt some cogwheel rigidity at the muscles near the joint of the left elbow when moving the arm from flexion into extension.
As completely as possible the patient documented all the symptoms he experienced- from a strange feeling in the skin of his face, to nausea, to the certain feeling he had that there was something wrong with him. He even suggested that perhaps some symptoms were all in his head, because he'd lost the ability to distinguish the important symptoms from the ones that simply indicated he was sixty- five- like the crick in his neck he occasionally felt.
What could this doctor give him that other one's failed to do? The specialist in movement disorders told him he probably had a parkinsonian syndrome, which one was still unclear though he favored Shy- Drager, because it explained the blood pressure involvement. The physician gave him an hour. He sat with him and listened to him and his wife speak about the changes he's experienced. He ordered a heart test and requested monitoring of his blood pressure. Would this be enough?
The list of symptoms was long. For some reason the first complaints he reported were not typical of PD; a feeling he was ill, that something was wrong. His mind felt clouded. He gave up exercising, believing he shouldn't do the things he used to do. No more rollerblading or riding the bike. He felt his ability to walk was different, compromised. The wife thinks his face has become unexpressive and blank. Maybe the largest problem is the high blood pressure- he takes four medications, and still the nursing staff recorded a diastolic pressure close to 180.
The wife is a nurse and agreed to monitor the blood pressure for a week and report on her findings. The doctor felt reluctant to prescribe medications until he was knowledgeable about the blood pressure and his heart, requesting an MIGB study.
Upon examination, he had no visible resting tremor, though his wife reported his left hand did tremble. With two arms outstretched, a fine shake quivered in the fingers of the left hand. Distracted by trying to pat and turn, pat and turn the right hand, the doctor felt some cogwheel rigidity at the muscles near the joint of the left elbow when moving the arm from flexion into extension.
As completely as possible the patient documented all the symptoms he experienced- from a strange feeling in the skin of his face, to nausea, to the certain feeling he had that there was something wrong with him. He even suggested that perhaps some symptoms were all in his head, because he'd lost the ability to distinguish the important symptoms from the ones that simply indicated he was sixty- five- like the crick in his neck he occasionally felt.
What could this doctor give him that other one's failed to do? The specialist in movement disorders told him he probably had a parkinsonian syndrome, which one was still unclear though he favored Shy- Drager, because it explained the blood pressure involvement. The physician gave him an hour. He sat with him and listened to him and his wife speak about the changes he's experienced. He ordered a heart test and requested monitoring of his blood pressure. Would this be enough?
Thursday, February 5, 2009
Viartis
http://www.viartis.net/parkinsons.disease/news.LR.htm
14th January 2009 - News release
michael j.fox foundation funds six new approaches
The Michael J. Fox Foundation is funding six new approaches for Parkinson's disease. Two of the projects are assessing the effects of drugs normally used for other medical disorders. One team will investigate the potential of Simvastatin (a drug currently used to treat high cholesterol) to reduce dyskinesia in Parkinson's disease. Another team will assess the effect of Isradipine (a drug for high blood pressure) in its ability to relieve dopamine producing neurons from degeneration that occurs in Parkinson’s disease. The biochemistry of these two drugs is completely unrelated to Parkinson's disease. The Foundation does admit that these approaches seem irrelevant to Parkinson's disease, but claim preclinical studies suggest they might be beneficial.
The Foundation is funding four other projects, including three new types of drugs. One of them aims to show "cerebrospinal fluid based biomarkers measuring microtubule-mediated transport of cargo molecules in neurons are altered in people with Parkinson’s disease." This study is very remote from the known biochemistry of Parkinson's disease, and so does not have the potential to result in anything of practical significance. Funding is also being provided for three new types of drugs: ER-beta selective agonists, type 7 phosphodiesterase (PDE7) inhibitors, and Multiphosphatase Inhibitors. The primary fault in Parkinson's disease is insufficient dopamine formation. Yet none of these three drugs, even in theory, has the potential to increase dopamine formation.
The front page of the Michael J. Fox Foundation web site claims, "We don't just fund research. We fund results." However, despite their good intentions, none of their numerous projects has ever resulted in anyone ever being rid of Parkinson's disease. This is largely because of the faulty scientific basis on which their projects have been based.
Irritated by the negative tone, I emailed the site stating I think one need limit one's negative feedback until a qualified individual could respond to the criticism. I could care less what his opinion is. Unless he can tell me he has an educational background suitable to comment on the funding decisions of the Michael J. Fox Foundation, he needs to keep his mouth shut. I sent the email and began to explore who and what Viartis is.
It seems the site provides information about recent news on Parkinson's disease; information one could acquire through the internet. Though one might assume it is there solely to enlighten, it may have other intentions. Wikipedia, the encyclopedia free and open to input by most people, has banned the individual they claim is Keith Bridgeman, and the person behind Viartis. They claim he has edited the work of other professionals, sending users of written content to Viartis sites. Banned from Wikipedia since June 22, 2006 editors suspect he has infiltrated the on-line encyclopedia and posted information under other aliases- over 400 of them. They call such entities the 'sockpuppets' of General Trojo.
Others suggest the person is a science teacher. Actual students of the teacher think there must be a mistake in identity. According to some, this person is also involved in sailing lessons. Times in which Keith Bridgeman altered information on the Wikipedia, Parkinson site seem to correspond to hours in which pupils would be engaged in test taking or free on break from regular classes.
Whether a mistaken identity, or truly a teacher with a calling to Parkinson's disease, the site would take a lot of time to construct and maintain. News of PD accrues daily. My father, an English teacher in the public schools of Chicago, Illinois never had the time to devote to anything more than grading papers and perhaps watching the evening news, when I was a child.
The nerve the negativity hit was research. In our times, all efforts to clarify issues of PD are worthwhile. All sources of funding provide hope. The Foundation of Michael J. Fox is not without brains, experience and intelligence. They will fund only the best chances- the sea of proposals is deep and money is tight.
14th January 2009 - News release
michael j.fox foundation funds six new approaches
The Michael J. Fox Foundation is funding six new approaches for Parkinson's disease. Two of the projects are assessing the effects of drugs normally used for other medical disorders. One team will investigate the potential of Simvastatin (a drug currently used to treat high cholesterol) to reduce dyskinesia in Parkinson's disease. Another team will assess the effect of Isradipine (a drug for high blood pressure) in its ability to relieve dopamine producing neurons from degeneration that occurs in Parkinson’s disease. The biochemistry of these two drugs is completely unrelated to Parkinson's disease. The Foundation does admit that these approaches seem irrelevant to Parkinson's disease, but claim preclinical studies suggest they might be beneficial.
The Foundation is funding four other projects, including three new types of drugs. One of them aims to show "cerebrospinal fluid based biomarkers measuring microtubule-mediated transport of cargo molecules in neurons are altered in people with Parkinson’s disease." This study is very remote from the known biochemistry of Parkinson's disease, and so does not have the potential to result in anything of practical significance. Funding is also being provided for three new types of drugs: ER-beta selective agonists, type 7 phosphodiesterase (PDE7) inhibitors, and Multiphosphatase Inhibitors. The primary fault in Parkinson's disease is insufficient dopamine formation. Yet none of these three drugs, even in theory, has the potential to increase dopamine formation.
The front page of the Michael J. Fox Foundation web site claims, "We don't just fund research. We fund results." However, despite their good intentions, none of their numerous projects has ever resulted in anyone ever being rid of Parkinson's disease. This is largely because of the faulty scientific basis on which their projects have been based.
Irritated by the negative tone, I emailed the site stating I think one need limit one's negative feedback until a qualified individual could respond to the criticism. I could care less what his opinion is. Unless he can tell me he has an educational background suitable to comment on the funding decisions of the Michael J. Fox Foundation, he needs to keep his mouth shut. I sent the email and began to explore who and what Viartis is.
It seems the site provides information about recent news on Parkinson's disease; information one could acquire through the internet. Though one might assume it is there solely to enlighten, it may have other intentions. Wikipedia, the encyclopedia free and open to input by most people, has banned the individual they claim is Keith Bridgeman, and the person behind Viartis. They claim he has edited the work of other professionals, sending users of written content to Viartis sites. Banned from Wikipedia since June 22, 2006 editors suspect he has infiltrated the on-line encyclopedia and posted information under other aliases- over 400 of them. They call such entities the 'sockpuppets' of General Trojo.
Others suggest the person is a science teacher. Actual students of the teacher think there must be a mistake in identity. According to some, this person is also involved in sailing lessons. Times in which Keith Bridgeman altered information on the Wikipedia, Parkinson site seem to correspond to hours in which pupils would be engaged in test taking or free on break from regular classes.
Whether a mistaken identity, or truly a teacher with a calling to Parkinson's disease, the site would take a lot of time to construct and maintain. News of PD accrues daily. My father, an English teacher in the public schools of Chicago, Illinois never had the time to devote to anything more than grading papers and perhaps watching the evening news, when I was a child.
The nerve the negativity hit was research. In our times, all efforts to clarify issues of PD are worthwhile. All sources of funding provide hope. The Foundation of Michael J. Fox is not without brains, experience and intelligence. They will fund only the best chances- the sea of proposals is deep and money is tight.
Thursday, January 29, 2009
Movement Disorders
The clinic moved to their new location in the Morsani Building, with the valet behind a podium, shiny cars idling in front of the sliding glass doors; I thought I stepped into a hotel, until I see a youngish woman being buffeted by a gust of wind, her gait strange and uncoordinated while a man holds her wheelchair behind her. The woman with the close-cropped grey hair, normally behind the front desk escorts me to the elevator.
On the third floor, the patient waiting area is a mass of sitting areas, open wall window and artwork on the opposing side. Photographs the length of the space are waves in black and white, memorable undulations. Examination rooms have the same fluorescent lighting as the rooms they moved away from, but the hallways accommodate a group, not just two slender people. Rooms are ample, most are empty.
Our room is full of people waiting for the doctor who arrives with his own small retinue- the nurse, medical student, and writer. In his hands, the patient has a green camouflage - colored baseball cap. The doctor asks him if he's a hunter.
No, I was a welder. The doctor shakes his head, nodding in affirmation, beginning to explain his position on manganese toxicity and development of a Parkinson- like syndrome. The patient wears a thermal undershirt underneath a long- sleeved dark green shirt. His black shoes have Velcro tabs, diabetes shoes. He sits on the examination table, his head the highest in the room, his face motionless mostly, though a small tilt of the head and smirk pass in reaction to what the doctor asks him, but does not give him a pause to answer. Eight breathing bodies make the room ten degrees warmer. I take off the woolen jacket.
The adult children occupy the seats along the far wall, the daughter following every word, nodding and interjecting questions and comments. Her blond hair is styled away from her face, every expression moves across her facial features. She wears a skirt of red and white checks, her shoes red and white polka dots. A tattoo on her right foot is colorful and floral; the small homemade star tattoo on the left hand of the patient is greenish- blue with faded age. The youngest son, with the straightest nose and cropped light hair drove up from Ft. Lauderdale, three or four hours on the highway. He asks several questions moving his long- fingered hands in front of his chest, nervously.
The patient says so few words, the doctor so many. I seem the only one bothered. The daughter assumes the caregiver role, taking the prescriptions, noting the gradual increase in levodopa dosage, depicted in a chart the physician has sketched.
When does he come back? Someone asks.
Six months. Let's see how he does on the new dosage. In six months, we can correct it if we need too.
The daughter explains to her father he'll return here, not to the previous doctor in Lakeland.
He'll be mad if I don't come back, the patient comments. The daughter pats him on the leg, assures him his old doctor will probably not notice.
On the third floor, the patient waiting area is a mass of sitting areas, open wall window and artwork on the opposing side. Photographs the length of the space are waves in black and white, memorable undulations. Examination rooms have the same fluorescent lighting as the rooms they moved away from, but the hallways accommodate a group, not just two slender people. Rooms are ample, most are empty.
Our room is full of people waiting for the doctor who arrives with his own small retinue- the nurse, medical student, and writer. In his hands, the patient has a green camouflage - colored baseball cap. The doctor asks him if he's a hunter.
No, I was a welder. The doctor shakes his head, nodding in affirmation, beginning to explain his position on manganese toxicity and development of a Parkinson- like syndrome. The patient wears a thermal undershirt underneath a long- sleeved dark green shirt. His black shoes have Velcro tabs, diabetes shoes. He sits on the examination table, his head the highest in the room, his face motionless mostly, though a small tilt of the head and smirk pass in reaction to what the doctor asks him, but does not give him a pause to answer. Eight breathing bodies make the room ten degrees warmer. I take off the woolen jacket.
The adult children occupy the seats along the far wall, the daughter following every word, nodding and interjecting questions and comments. Her blond hair is styled away from her face, every expression moves across her facial features. She wears a skirt of red and white checks, her shoes red and white polka dots. A tattoo on her right foot is colorful and floral; the small homemade star tattoo on the left hand of the patient is greenish- blue with faded age. The youngest son, with the straightest nose and cropped light hair drove up from Ft. Lauderdale, three or four hours on the highway. He asks several questions moving his long- fingered hands in front of his chest, nervously.
The patient says so few words, the doctor so many. I seem the only one bothered. The daughter assumes the caregiver role, taking the prescriptions, noting the gradual increase in levodopa dosage, depicted in a chart the physician has sketched.
When does he come back? Someone asks.
Six months. Let's see how he does on the new dosage. In six months, we can correct it if we need too.
The daughter explains to her father he'll return here, not to the previous doctor in Lakeland.
He'll be mad if I don't come back, the patient comments. The daughter pats him on the leg, assures him his old doctor will probably not notice.
Thursday, January 22, 2009
Viejo
The patient is small and sits neatly in the chair. He speaks only Spanish, and he's with his son who is bilingual. The son calls him Viejo- old man. Diagnosed in his thirties, he's had PD for more than thirty years and yet he has no resting tremor. His face has little expression and his speech is gruff but when he walks in the hallway, he still swings his arms. He complains of not being able to sleep for more than three hours at night, rising twice to use the toilet. Yet he has a sleep benefit; he wakes in the morning and he is "on". The dopamine producing cells in his substantia nigra are still producing sufficient neurotransmitter, enabling him to wake and move, not taking his first pills until eight o'clock.
The doctor asks about dyskinesia, and the son confirms he has uncontrollable movements. He's not moving now, no twitches, no tremor. He hold his arms straight out in front of him and the right hand trembles slightly. His lips purse as he concentrates on the outstretched arms. The lips cover his teeth entirely; old man lips, maybe he has lost teeth.
The son doesn't sit. He stands leaning against the wall in the small cubicle with the doctor, the medical student and me. We sit on various objects, mostly stools and chairs. I sit on the lid of the garbage, but there is an open chair for him. He wears a blue cap, which he keeps on as he shifts, leaning with his back to the wall, then turning to face the doctor, one side to the wall. The doctor speaks about physical therapy, asking whether he has Medicare- No, Medicaid the son replies. The doctor advises a call before arriving at therapy, to make sure they take that type of insurance. They are out the door with new scripts and a green file in hand.
The chart gives details of a pallidotomy performed in Cuba. The brain surgery apparently eliminated the tremor from half his body. He must have arrived here not long ago… imagine a patient with PD on a raft of tires in the waves of the Florida Straits. Surely, he couldn't simply have arrived by plane, perhaps with a detour through Mexico. How feasible are Cuban pallidotomies for citizens of the United States?
Medical tourism appears to be flourishing in Cuba, by way of Canada for people with passports from the United States. The Neurological Rehabilitation and Restoration Program treats patients with Parkinson's Disease.
The doctor asks about dyskinesia, and the son confirms he has uncontrollable movements. He's not moving now, no twitches, no tremor. He hold his arms straight out in front of him and the right hand trembles slightly. His lips purse as he concentrates on the outstretched arms. The lips cover his teeth entirely; old man lips, maybe he has lost teeth.
The son doesn't sit. He stands leaning against the wall in the small cubicle with the doctor, the medical student and me. We sit on various objects, mostly stools and chairs. I sit on the lid of the garbage, but there is an open chair for him. He wears a blue cap, which he keeps on as he shifts, leaning with his back to the wall, then turning to face the doctor, one side to the wall. The doctor speaks about physical therapy, asking whether he has Medicare- No, Medicaid the son replies. The doctor advises a call before arriving at therapy, to make sure they take that type of insurance. They are out the door with new scripts and a green file in hand.
The chart gives details of a pallidotomy performed in Cuba. The brain surgery apparently eliminated the tremor from half his body. He must have arrived here not long ago… imagine a patient with PD on a raft of tires in the waves of the Florida Straits. Surely, he couldn't simply have arrived by plane, perhaps with a detour through Mexico. How feasible are Cuban pallidotomies for citizens of the United States?
Medical tourism appears to be flourishing in Cuba, by way of Canada for people with passports from the United States. The Neurological Rehabilitation and Restoration Program treats patients with Parkinson's Disease.
Thursday, January 15, 2009
The Tree Analogy
The physician still questions the diagnosis of Parkinson's disease. He comments microvascular disease, caused by years of high blood pressure, results in ischemic changes in the brain, that eventually presents in lower body parkinsonism. Today her blood pressure is 147/73 with blood pressure lowering medication. To explain, he gives the tree analogy. The trunks, the carotid and jugular, are strong and capable of providing nutrients to the limbs above; only the twigs at the very ends of the limbs suffer from too little circulation and those leaves grow yellow and eventually crinkle and die. Due to the way the pathway of nutrient flow, the illness affects the legs before the arms and face.
The patient comments she's afraid to go anywhere without the cane. Five days ago, she fell heading into her bathroom, her arms full of toiletries. The plastic containers were unharmed, but she bruised her body and self-confidence. The doctor explains when a patient complains of frequent falls, think of lower body parkinsonism.
Examining the patient, she has no shaking. He comments about a third of PD patients have no hand tremor. Hand movements and coordination are both good. When he asks her to strike her foot repetitively her tappings dwindle, the movements become smaller and diminish entirely.
There is little he can do to keep her from falling. Medications have little affect on balance. The clinician mentions physical therapy and comments Medicare will pay for two prescriptions of therapy per year. Therapists will also be able to judge whether she's suitable for a walker or other device. The patient comments about Tai Chi and how she'd like to enroll in a class, to improve her balance. The physician likes the idea and turns to Goggle to search for a nearby site where she can work on becoming more rooted.
The patient comments she's afraid to go anywhere without the cane. Five days ago, she fell heading into her bathroom, her arms full of toiletries. The plastic containers were unharmed, but she bruised her body and self-confidence. The doctor explains when a patient complains of frequent falls, think of lower body parkinsonism.
Examining the patient, she has no shaking. He comments about a third of PD patients have no hand tremor. Hand movements and coordination are both good. When he asks her to strike her foot repetitively her tappings dwindle, the movements become smaller and diminish entirely.
There is little he can do to keep her from falling. Medications have little affect on balance. The clinician mentions physical therapy and comments Medicare will pay for two prescriptions of therapy per year. Therapists will also be able to judge whether she's suitable for a walker or other device. The patient comments about Tai Chi and how she'd like to enroll in a class, to improve her balance. The physician likes the idea and turns to Goggle to search for a nearby site where she can work on becoming more rooted.
Friday, January 9, 2009
Two Men and a Mute
Shy Drager's Syndrome takes away the body's ability to regulate blood pressure so there is a lot of lightheadedness and falling. That's why the spouse wears tight hose and uses the wheel chair in the middle of the night. It's all happened before. The doctor likes to give these patients erythropoietin, a substance that promotes formation of red blood cells. The patient also takes Florinef, a drug that causes the kidney's to hold onto salt, thereby increasing blood volume.
The patient asks the medical student whether she's a dancer. Her blond hair hangs straight down past her shoulders and she responds easily, replying when she was younger. The spouse teaches dance, and has owned a dance studio for forty years.
The last episode lasted about 15 minutes. She was ready to call 911. It began with shaking in the arms. The trembling got more violent, his eyes rolled back in his head, and his torso straightened in the wheelchair. His breathing changed and he lost bladder control. The wife has described the episodes before, apparently with less emotion. The doctor worries about seizures and recommends an EEG and MRI. He comments it is rare to have PD and seizures appear together, they tend to be inversely related - though hypoxia can induce them.
The man with the thick hair and heavy rectangular glasses asks about scotch and water. He never remembers the seizures, even right after they've occurred. When would you like a drink? The physician asks. Before and after dinner the patient answers, but the wife returns and vetoes all scotch with a wave of her hand. He won't be able to walk, she claims. No scotch.
He recalls a meeting he recently attended. Hugo Chavez was there and he didn't look well. He and his wife had just returned and their bags were still in the hall near the front door. It was a dream, his wife reminds him. He looks at her. As the doctor hands her a new prescription, she turns to her husband, explaining there will be three more pills to add to the regular five. He never believes he needs to take them- she comments, he thinks I am poisoning him.
The next patient comes to clinic with his son. They are speaking Greek when the team enters. He is small and bald and when the doctor asks him to walk down the hallway, he jogs. He exercises everyday. The doctor asks about the hallucinations, and the patient replies he sees them all the time, all kinds of people. Sometimes they walk next to him. Mostly they are happy. Women appear and beckon to him. Some are naked and lie in bed with him and his wife. He has woken in bed, wet with semen. When the dreams occur, he says he feels like dancing and waltzes side to side, his arms carrying an invisible partner.
The patient in the wheelchair hasn't used her feet in a long, long time. They are crooked underneath her white socks, with permanent contractures. Her head almost sits on her chest cavity, the bowing of her upper back is so pronounced. The mother who has been reading a magazine, doesn't comment on the others in the room as the doctor asks permission to let the medical student and writer attend. Clearly, she is bothered. The doctor laughs softly as the stuffed bear the girl holds in her lap speaks. He looks at the girl with short-cropped dark hair, and asks her a question. He wants her to hold out her hands and demonstrates. The girl creeps her right hand towards her mother's left arm and squeezes. Does she speak? He asks. No.
With cerebral palsy from birth, the daughter never speaks. Since the last appointment, the medicines have calmed her dystonic movements. Then the mother leans forward and asks for a recommendation for a Spanish- speaking psychiatrist. She says her daughter screams when people touch her, when she tries to change her diaper or brush her teeth, or change her clothes, or bathe her. When the daughter is tired of family company, she screams. She constantly grinds her teeth and refuses to drink. Mother puts her in her room, closing the door to scream alone. She fears neighbors will call the police, fears they think she is abusing her daughter. Mother confides she gave her daughter three times the dose of a drug to make the child manageable for the appointment.
What kind of quality of life is that? The doctor asks. Screaming is clearly no way to live.
The patient asks the medical student whether she's a dancer. Her blond hair hangs straight down past her shoulders and she responds easily, replying when she was younger. The spouse teaches dance, and has owned a dance studio for forty years.
The last episode lasted about 15 minutes. She was ready to call 911. It began with shaking in the arms. The trembling got more violent, his eyes rolled back in his head, and his torso straightened in the wheelchair. His breathing changed and he lost bladder control. The wife has described the episodes before, apparently with less emotion. The doctor worries about seizures and recommends an EEG and MRI. He comments it is rare to have PD and seizures appear together, they tend to be inversely related - though hypoxia can induce them.
The man with the thick hair and heavy rectangular glasses asks about scotch and water. He never remembers the seizures, even right after they've occurred. When would you like a drink? The physician asks. Before and after dinner the patient answers, but the wife returns and vetoes all scotch with a wave of her hand. He won't be able to walk, she claims. No scotch.
He recalls a meeting he recently attended. Hugo Chavez was there and he didn't look well. He and his wife had just returned and their bags were still in the hall near the front door. It was a dream, his wife reminds him. He looks at her. As the doctor hands her a new prescription, she turns to her husband, explaining there will be three more pills to add to the regular five. He never believes he needs to take them- she comments, he thinks I am poisoning him.
The next patient comes to clinic with his son. They are speaking Greek when the team enters. He is small and bald and when the doctor asks him to walk down the hallway, he jogs. He exercises everyday. The doctor asks about the hallucinations, and the patient replies he sees them all the time, all kinds of people. Sometimes they walk next to him. Mostly they are happy. Women appear and beckon to him. Some are naked and lie in bed with him and his wife. He has woken in bed, wet with semen. When the dreams occur, he says he feels like dancing and waltzes side to side, his arms carrying an invisible partner.
The patient in the wheelchair hasn't used her feet in a long, long time. They are crooked underneath her white socks, with permanent contractures. Her head almost sits on her chest cavity, the bowing of her upper back is so pronounced. The mother who has been reading a magazine, doesn't comment on the others in the room as the doctor asks permission to let the medical student and writer attend. Clearly, she is bothered. The doctor laughs softly as the stuffed bear the girl holds in her lap speaks. He looks at the girl with short-cropped dark hair, and asks her a question. He wants her to hold out her hands and demonstrates. The girl creeps her right hand towards her mother's left arm and squeezes. Does she speak? He asks. No.
With cerebral palsy from birth, the daughter never speaks. Since the last appointment, the medicines have calmed her dystonic movements. Then the mother leans forward and asks for a recommendation for a Spanish- speaking psychiatrist. She says her daughter screams when people touch her, when she tries to change her diaper or brush her teeth, or change her clothes, or bathe her. When the daughter is tired of family company, she screams. She constantly grinds her teeth and refuses to drink. Mother puts her in her room, closing the door to scream alone. She fears neighbors will call the police, fears they think she is abusing her daughter. Mother confides she gave her daughter three times the dose of a drug to make the child manageable for the appointment.
What kind of quality of life is that? The doctor asks. Screaming is clearly no way to live.
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