Incapacitating Dyskinesia

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Kate O’Neill

Her blond hair hangs thick and heavy as dyskinesia moves her head in random angles.  Her arms and shoulders continue to move as  she sits finally in the chair facing the physician.  It takes her several moments to settle; putting her bag at her feet and readjusting herself in the seat.  The doctor comments on her dyskinesia and asks when she last took her medicine.  It was several hours ago.  Her limbs move as she speaks, reporting she also has dyskinesia when her medicine is working well.  ‘How many hours a day are you free from them? ‘ the physician asks.  Her answer is lost in her movements, but the doctor seems to understand her anyway.

Diagnosed with Parkinson’s disease eight years ago, the dyskinesia has gotten worse.  Other medications added to her daily regimen have done little to control her movements.  Behind his desk, the doctor advises decreasing the dosage of Sinemet she takes.  The patient tells him she’s tried and has experienced episodes of tightness in her chest; her hands rest against her body momentarily and she explains she feels like she can’t get air into her lungs.  She feels like she’s going to die, because she can’t breathe.  The doctor nods.  He tells her the illness she has affects all the muscles in her body, even the small muscles that expand and contract between her ribs; the intercostals.  He checks the computer for her age while he asks whether she’s thought about having deep brain stimulation.  Mentioning he seldom recommends his patients consult a neurosurgeon, she would be an excellent candidate.

She’s thirty-eight.  She gave up working two years ago when her dyskinesia began to interfere with work.  A banker, she had a lot of public contact.  Several clients asked her manager about  her health and she recognized she would have to make a change.  The bank offered to place her in a position with less public contact, but she preferred to leave entirely.

The neurologist gives her the card for the neurosurgeon and asks her about other things; is she sleeping well?  How is her diet?  Her arms elevate and her head twists and it’s hard to imagine her feeding herself.  A caregiver comes in every day to assist her with daily tasks.  The doctor comments she’s lost ten pounds since her last visit.  He would like to see her walk in the hallway.  She’s never fallen, though she’s come close.  Walking seems to dampen the random motions of her upper body, and the doctor complements her stride.  Exercise would be good for her, he tells her.  She allows him to write her a prescription for physical therapy, as he urges her to think of the future.  Assisted living provides hot meals.  She reaches across the desk and shakes his hand before she leaves, her motions somewhat milder.

Peru

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by Kate O’Neill

She pushes her mother in the wheelchair into the confines of the small examination room.  The daughter speaks as soon as her weight hits the front of the chair.  She places one hand on the desk in front of the doctor, who gazes up at her from the forms in front of him.  Explaining the appointment was her idea, her mother is visiting from Peru and rarely sees a physician.  The mother has become increasingly slower over the last months; she was amazed at how she’s changed.  Ages ago she was told her mother had Parkinson’s disease.  The old woman in the chair shakes her head.  All medications make her ill, the daughter explains.  She doesn’t want to take any pills.

The physician faces the daughter, shaking his head.  Parkinson’s disease has no cure.  Treatment is directed solely to relieve the symptoms; slowness, rigidity and sometimes a tremor.  Most treatments are in the form of medications;  by supplying the brain with the neurotransmitter it lacks patients are able to move in a way they had previously. The daughter nods and admits her mother refuses to take any medications.  She asks about any other things they might do- surgery perhaps?  The doctor explains surgery is effective for patients suffering from dyskinesia; the random writhing movements patients are unable to control and come as a side effect from using dopamine for between several years.  The white-haired woman in the wheelchair shakes her head exclaiming something in Spanish.  Her voice is soft and whispery and the bend in her back makes her voice address lap.

The doctor spreads his hands and states, ‘There’s nothing I can do for you.  Parkinson’s disease is managed with medications; we address the symptoms.  They are helpful for many patients, but your mother doesn’t seem to want to try them.’  The daughter stares across the table at the physician and silently looks at her mother.  The hunched woman crunches a white tissue in her gnarled hands and the daughter nods and stands.  The nurse comes through the door with a folder, and the doctor shakes his head stating there is no charge for this appointment, he can do nothing for the patient.  The daughter takes her mother’s wheelchair and nods to the nurse, her eyes on the floor in front of her.

Greek Translation

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By Kate O’Neill
Two patients in addition to those scheduled have arrived in the last half hour.  The department of Neurology allocates thirty minutes for people returning for a follow-up appointment.  New patients are granted an entire hour.  The scheduling error has the doctor in a mildly irritated state.  The nurse coordinator pokes her head in the room indicating two patients are competing for his attention for the next appointment.  The double booking was done by the university secretarial staff, who was unaware of the length of time given to the doctor’s patients.
                  The new patient, who has waited twenty-five minutes arrives with his grand-daughter.  The patient is Greek.  His language, and his parkinsonism make his speech difficult to understand.  The black-haired girl comes along to translate his words.  She begins speaking as soon as they enter the small space.  Her grandfather has been cared for by his regular doctor.  When his problems became more severe the family sought an appointment with the movement disorder faculty.  The doctor explains his new patients normally receive an hour, but today’s situation is unusual as two others are waiting to see him as well.  The doctor shakes off his aggravation with the wave of a hand and asks, “What brings you to the movement disorder clinic this afternoon?”
                  The young woman gazes at him, stating, ‘Yes, but this isn’t our problem.  We have insurance and pay for our time.’  The doctor nods and sits as the grandfather speaks Greek in a whispery voice.  The girl bends in towards him, translating his words.
                  The main problem is he gets stuck every night.  Nodding, the doctor scans the paperwork.  Medications are listed, as well as the dose.  What does he mean by stuck?  The doctor explains patients with Parkinson’s disease suffer from freezing episodes.  The daughter translates, he has episodes of freezing but that’s not his current concern.  His right leg gets stuck inward and it occurs in the middle of the night while lying in bed.  The doctor nods and comes around the desk.  He tells the granddaughter he must check the rigidity of the man’s muscles, to see how well the medication is working.  As he moves the limbs of the bent man in the chair, he speaks about three common ailments people with PDtend to suffer from.
                  Tremor is the initial symptom in many patients, and he illustrates moving his hand in a fine jiggle.  The girl nods, she’s seen the tremor.  The left foot of her grandfather also jiggles.   Dyskinesia.  He repeats the word when the girl looks at him questioning.  The word describes the somewhat writhing-like movements patient’s endure.  Occurring after several years of treatment with levodopa, the unusual actions are caused by medication, a side effect.   The grandfather shakes his head.  What the physician pantomimes is not his problem.  He stands carefully, pushing off the arm rests of the chair, then turns his right leg inward so the toes of his foot meet the instep of his left side.  Standing, he speaks Greek and makes a face indicating with his hands the pain he experiences.  Nodding at the old man, the doctor comments, “A lot of pain.”
                  “Much pain, too much” and he retakes his seat.
                  “Dystonia.”  Explaining that it’s a muscle cramp that forces the limb into unusual sustained postures.  The doctor concedes they can be quite painful, and afterward leave the tissue sore.  He thinks if her grandfather switches his evening dose of medication to a sustained release variety, he may find some relief from the episodes.  The girl translates this and the man gives a thumb up.

Camptocormia

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Kate O’Neill

The patient’s hair is thin and he has it combed across the bald patch on top.  He’s been dyeing it.  It can’t possibly be so dark.  The hunch in his back makes him much shorter than he once was- that fold in the back is called camptocormia.  It’s as if his torso was ironed to his thighs, an unfortunate situation brought on by Parkinson’s disease.  Trying to walk while bent in half is hard.  He must strain his neck backward to see forward.  Gravitational forces drive him downward but hisliving spirit doesn’t submit.  Drinking from the water fountain is easy, he’s already bent.

Maybe if he had sought medical attention at an earlier age his posture would not have changed so.   The doctor doesn’t commit to being able to stall the bend of camptocormia.  Some patients seem to develop the bend in half, whether they seek treatment or go without.  Physical therapy and attention to posture would surely have some affect; perhaps a wife who consistently urges him to stand up straight would have helped.

The patient himself has no complaints when the doctor asks about his latest concerns.  It’s hard to hear his speech.  The end of his sentences are addressed to the floor.  His voice has that whispery quality familiar to patients who’ve had the illness for some time.  Asking about his activities, and his ability to swallow the doctor mentions he’d like him to see a speech therapist.  What he has to gain is not simply louder speech.  The therapist will work on breathing and probably recommend some exercises.  It’s hard to see any reaction in his face.  Seconds later the patient tells those in the room that he has enrolled in the local gym, and has been attending three days a week.  It’s been a few months now and the gym has become one of his weekly obligations.  He’s met several older members who also find exercise helpful.

The doctor rises to perform the physical examination as the medical student asks whether he joined a YMCA.  They have specific classes, ‘Silver Sneakers’ specifically for retirees.  The patient turns his head  while the doctor checks the flexibility of his elbow joint and tells the young man standing leaning against the wall, that he’s joined an LA Fitness, the closest gym to his home.  Flushing pink the young man nods his head.  The doctor asks whether he knows the place and he nods, it’s where he met his girlfriend.  The social worker smiles, she also has a membership there.  ‘A popular place.’ the doctor remarks, then commends his commitment to physical activity.

10 Most Commonly Asked Caregiver Questions

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Q – How can I do around-the-clock caregiving and avoid burn out?

A – Make yourself the #1 priority by putting your needs first.  Manage stress, eat well, get adequate rest, ask for help and keep doing the things you love to do.  Always keep in mind “What would happen to your loved one if something happened to you?”

 

Q – How do I handle the non-stop pressure and demands of caregiving?

A – Constant activity, running around from one task to another, will beat you up and wear you down.  When you are given a break take it.  If you have an hour to yourself, don’t feel guilty and start cleaning the kitchen or garage.  Stop, flop and reward yourself with my time and fun stuff!

 

Q – Why do I feel that caregiving is taking over my life?

A – Many well-meaning caregivers make the mistake of dedicating every waking minute to the needs of their loved one.   They give up the things they love to do because they feel guilty leaving the house.  Staying home stuck in a rut can soon become a bad habit that leads to boredom and resentment.

Lunch with the girls or golf with the boys is exactly what you need.  Leave your loved one alone or in good hands and get out!  If you don’t find time for your life, you will surely lose it.

 

Q – How can I stay positive? 

A – You can only think one thought at a time and you can choose the thought.  When you have a negative thought simply replace it with a positive one.  You have the power to control your thinking.  Make every effort to keep your head full of positive thoughts so when negativity knocks it can’t get in!

 

Q – Why do I feel frustrated?

A – You are stuck with something that you don’t want and there is nothing that you can do about it.  You don’t want to lose your life to the demands of caregiving while at the same time you know that no one can take better care of your loved one than you.  Worse than that, you want to see your loved one doing better but you cannot control the course of the disease or aging process.  Lack of control, in any situation, leads to frustration.  Try to be accepting of life as you know it.  Be assured that today is exactly as it should be.

 

Q – How do I keep from getting run down?

A – Caregiving takes its toll.  It’s no job for sissies.  Waiting on someone around-the-clock can wear you out physically in a week and mentally even faster.  To feel strong and empowered, you need to stay fit.  Bolster yourself with healthy food, appropriate exercise, adequate rest and a super support system.  How can you keep going when you’re too tired to stand up?

 

Q – How do I handle interfering family members who keep telling me what to do?

A – If you are the primary caregiver, you rule!  No one but you is in the position to make choices or decisions that directly affect you or your loved one.  If well-meaning family members or friends try to give unwanted advice, tell them that if they are not making a hands-on contribution to the demands of the day to please stay home and keep their mouth shut.  You have earned this right!

 

Q – How can I do everything?

A – Don’t do big time consuming jobs that can easily be accomplished by someone else.  Your time is taken up caring for yourself and your loved one.  You don’t have time to clean the house, wash the windows, vacuum the pool, manicure the yard, detail the car and groom the dog!  Hire out these tasks if possible or ask your super support team to lend a hand.  Those who love you will gladly help when given the chance.

 

Q – What can I do to keep from feeling depressed?

A – Depression is a low blue mood that lasts for more than a few weeks.  If you are living with an unhealthy amount of stress there is a good chance that depression will creep in.  Try fast and easy stress busters that could save your life!  Say No…Limit Change…Eat Well…Take Time Off…Ask for Help…Listen to Music…Get Exercise…Do Fun Things…Meditate Daily…Beach It…Dine Out…Enjoy Family…Go Shopping…Think Positive… Pray… and on and on…

 

Q – What is the best thing I can do as a caregiver?

A – Maintain the self-respect and dignity of your loved one as he/she has lost it and you are the only one who can give it back.  Encourage independence through praise and motivation.  Allow your loved one to do as much as possible for him/herself because the more you do for yourself the more under control you feel.  Always speak in a kind respectful manner and work as partners throughout the day.  Success will be yours.

 

 

Read My Weekly Journals – Kate O’Neill

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Read about patient concerns, family dilemmas, and the clinical dynamics of a weekly movement disorder clinic.  Observe ways a movement disorder neurologist manages patient symptoms with medications, surgical referrals, physical therapy, and caregiver options.  Find out more in my Weekly Journal.

Ascetic Qualities

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Wearing black, she has an ascetic quality. The fine gold cross at her neck contributes to this. In the seat she twists into the space between the arm rests. She wears her age well, not tinting her soft grey hair. The doctor reads his previous note. She had been experiencing diming of her vision and he wondered whether thinning of the retina was the problem. Parkinson’s disease is known to thin the outer layer of the retina, which is really an extension of the brain. He referred her to a neuro-opthalmalogist, who noticed she was acquiring a cataract. He also prescribed some eye drops that relieved some of the droopiness in the eyelid of her left eye. She comments she hesitates to use it frequently.

Diagnosed with PD in 2008, she is still at stage one. The illness is confined to her left hand, and tremor is all that is visible. She isn’t taking any levodopa yet, but taking Artane or trihexiphenidyl. The tremor is evident now as she sits in the office chair. The doctor moves her elbow, wrist and then thumb, without feeling any rigidity. Only when she taps her right hand on her thigh is he able to feel the slight hint of stiffness in the muscles. Her gait is largely unaffected. Her steps are strong and even, she turns without hesitation, swiveling her body weight. Her left hand doesn’t move from her side- the one indication an illness is at work.

She is subdued. Her voice is as soft as her affect. She doesn’t complain of depression but has a distinct lack of vitality about her. Whether this is her personality is questionable. The doctor comments on the lack of paper in the office, when formerly sales reps used to leave notepads, they now resort to printer paper. She smiles spontaneously, revealing her daughter-in-law is a physician as well.

She wakes at one in the morning frequently, though the doxepin, an anti-depressant, helps her get to sleep. The doctor comments she should be getting at least six to seven hours of straight sleep, and if the doxepin doesn’t provide this, she needs to increase the dosage. He thinks it may be time to begin levodopa/ carbidopa. The patient comments her past neurologist gave her a prescription for this medication right away, and it made her sick. The doctor comments it’s best to increase the dose slowly and to begin with a very small dose in combination with meals. He writes out a regimen of how to begin taking the medication, so that she increases by a half a pill every three days until she is taking three pills at day. What if the drug makes her nauseous? He tells her to back down to a smaller amount before increasing the dose. As she increases the dose of levodopa/ carbidopa she can begin tapering herself from the artane. If she feels her tremor gets worse, she can elect to continue the medication, though it may be the culprit for the constipation she suffers from. Asking about physical therapy, she reports she exercises in her house every day. About fiber, she eats prunes and gets enough, as well as plenty of water. He nods his head and responds it seems she’s doing all she can, he will see her back in six months. Turning left and another left, she is on the way out.

A Dystonic Illness

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The physician explains that past researchers lumped Parkinson’s disease was into two types; rigid akinetic or tremor dominant. In the days before levodopa patients evolved into a fixed dystonic posture. In fact, the PD is really a gradually progressive dystonic illness with or without tremors. Dytonia is an abnormal posture of a limb or other body part due to sustained contraction of muscles. The patient has had the disease for more than twenty years and today she sits in a wheelchair, her daughter by her side. She wears functional black sneakers though the dystonia is still evident in the position her left foot takes. The muscle spasm makes her left foot curl to the outside. Attempting to transfer to the toilet with one functional foot is difficult.

When the doctor recommended they increase the dosage of levodopa, in an effort to counter the dystonia, hallucinations became more frequent and she spent some time in a nursing home. With Seroquel the anxiety attacks have stopped, she sleeps well and is less agitated during the day. Though the patient may be faring better, her daughter’s expression is drawn tight. The physician complements the patient, telling her she looks well. The others in the room agree. At eighty three her complexion is smooth. Her skin is tightly pored, her white hair thick and styled. She has her own teeth and they are white. Though she has trouble raising her arms, her blouse is attractive and feminine.

On physical exam, the doctor notes he feels some rigidity in her left wrist, and it’s evident by the staccato way he flexes the joint. He conducts a modified Luria test, to assess her mental function and asks her to remember three numbers, after he she has said them three times. She has trouble imitating a movement the doctor performs, and he notes she suffers from a motor apraxia. The daughter notes her mother and father used to play Scrabble together, but those days are gone.

The visit progresses and the physician prints out the patient’s prescriptions , including one that may help her memory, begins explaining that the same kinds of chemical structures that are used to kill insects and as chemical weapons (acetyl cholinesterase inhibitors) have been modified to a safe medication (eg Aricept) that may improve the memory of patients with Alzheimer’s disease. The difference between a poison and a medicaton often revolves potency (or strength) and the formulation of the medicine. He expands on this, commenting the very popular notion that school children are taught to say no to drugs is deeply flawed, and that he would advocate the idea to Say Know to Drugs. He catches himself then, commenting he has had too much coffee, and that he looks forward to their next visit in six months. The daughter reaches over and shakes his hand before she unlocks the brakes of the wheelchair.

The coffee and perhaps the two other medical students have caused him to overlook the dissonance obvious in daughter’s mood. She is the soul caregiver for her mother, now. Her mother’s well- cared for appearance probably comes from her efforts, and she probably has little time for herself. She wears the strain of care giving, and it is not pretty.

Turned to Stone

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She doesn’t trust the physician or the nursing staff in the home to give her mother adequate care. Present only on specific days for several hours, the doctor attends to those who the nursing staff have trouble with. Her mother seldom raises attention, so she is overlooked. Lately, she has noticed a change in her mother, who has begun speaking about the animals that wander the facility. The daughter reports she has only seen one cat, though she is aware there may be several. The animals, she was told, are therapeutic for those who live there. The dark haired daughter stops speaking and gazes at her mother, who remains seated in the wheelchair by her side, then comments her mother always had dogs in the house. The elder woman’s eyes fix her daughter and she nods, repeating, ‘Dogs, yes…they’re chasin the chickens…and the birds are flying every which way, squawkin’ and fleein’ from the dogs.’ The doctor raises an eyebrow, but the daughter shakes her head, her silky brown hair sleek under the fluorescent lighting in the room. The doctor reminds the pair this is a movement disorder clinic. The daughter shakes her head again, not dissuaded by the physician’s comment. She notes she found him online, at the university website, and when she spoke with the secretary, she got an appointment. Though her mother has had hallucinations for some time, it’s the slowness that’s new. The nursing staff hardly notices.

The doctor scans the information sheets, noting her mother is taking no prescription medicines. He asks whether the patient ever saw a doctor regarding her hallucinations. The daughter reports her mother had a stroke several years ago, and moved to a nursing home when she and her siblings thought it would be safer than allowing her to return home with a wheelchair. About the hallucinations, the daughter shrugs stating she really isn’t sure, mother has always seen things. The physician glances at the younger woman, who shrugs, then turns and asks the patient her age, and whether she knows the date. The voice of the white haired woman is clear, high and her blue eyes scan the doctor’s features. She’s eighty-three and it’s the day after Valentine’s day, 2012. He asks about the things she sees, and she nods. He rephrases the question and asks about the animals in the facility she lives in. She nods again, reporting the dogs come through in the morning, there are eight or so. The smallest is dirty white, hairy and short. Some days the chickens wander through before them, and sometimes they’re being chased. She’s only seen the peacocks once. The morning they paraded by, several of her friends also saw them. Several times she’s seen a lioness. The doctor comes around the desk and asks for her hand. She extends her arm. Her thin skin is pale, her fingers unusually straight, while he asks whether the animals scare her. ‘No, they go on about their business. Don’t care too much for the snakes though.’ He glances at the daughter who raises her eyebrows. He moves her hand about her wrist noticing some rigidity in the movement and inquires whether she feels she’s become slower in movement. She nods commenting some days she feels she’s turned to stone. He smiles and asks her where she sees the snakes.

Across the Table

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The two people with Parkinson’s disease meet each other at the reception. Relatively newly diagnosed, she recently has taken up the trumpet. Her face is mobile, her voice is strong and she lacks any obvious sign of the illness. She comments that we can’t see the tremor in her hand, under the table.

Her son and her spouse are both physicians and they approve of her musical idea. Blowing into the trumpet will strengthen her respiratory muscles, as well as those surrounding her lips. There is a spontaneous quality about her that the man across the table lacks. He may have been diagnosed earlier, but the illness is far more apparent in his demeanor. There is so little expression in his face, people talking to him repeat themselves. He calls them on it, telling them, “ You’ve said that three times.”

With a distant cousin, he easily recalls what life was like when he was younger, the youngest of three boys, and the favorite of his father. He is eighty, now. Frequently, he loses the thread of what he’s speaking about. The cousin, seven years older tries to assist him by recalling his previous words. This mental fog is new to him and frustrating.

When the two old men walk they both have heads that thrust forward. My father watches his feet, while the cousin, Bill, gazes ahead. A previous physician prescribed Namenda for my father’s mental function. He applied the patch and didn’t like the affects. He wonders sometimes whether his change in mental acuity can be ascribed to Parkinson’s disease, or whether it’s merely aging. His wife sees the fog he functions in very clearly. She no longer gives him the accounts. He has made too many mistakes and they can’t afford the errors. He has difficulty following a recipe in a cookbook.

Both the cousin and my father have married women much younger than themselves. When the eighty-seven year old cousin drives across the United States in his mobile home, my father has been directed to not drive, due to the carpal tunnel surgery he recently underwent on his wrist. Other family members have rejoiced over the fact that he can no longer drive. He takes the bus, when he is home.

My father falls easily into the ‘depressed’ category. He has a consistent grey cloud over his head, though he may not admit it. He prefers to see himself as having a dark sense of humor. As he has gotten older he has gotten smaller. His clothing tends to hang on him, rather than expanding over his girth. This is new, too. He can eat cheese and chunks of rye bread now, without concern that the doctor will report his cholesterol too high. At eighty, each day is a blessing for those who love him.

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