Issues of Hope

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In the waiting room the older girl cares for her red- haired sister. The younger shines behind a fringe of bangs, her longer hair sweeps into a curl someone has taken the time to induce. She is not yet two and wears a pink dress. Her sister wears a white t-shirt with black graphics and her long pony tail hangs down her back. They are waiting for their mom. I am waiting for Parkinson’s patients. We are still waiting an hour and twenty minutes later. They’ve found the bathroom and changed diapers. The younger has eaten cookies, torn pages from a magazine, crawled around the floor, peered through the glass window, giggled, fainted repeatedly into her sister’s open arms, shrieked, cried, run out of the area provoking a chase, and tried to persuade her sister into taking off her bright pink belt, pointing to it, saying “Off. Mine.”
Their mother appears suddenly in a motorized wheel chair. Though her face is glazed, I hear her say, ‘shots in the back for pain’ as her left hand motions to her spine and the older girl nods, concern in her features as she picks up the diaper bag, and scans the seats as they leave.

The PD patient arrives at last. He asks whether his wife may accompany him. She has an unlikely Spanish name. They have been married fifty years. I learn this in a tense moment between them when the doctor asks a question and they both volunteer information. He is from Spain, and his tone is sharp towards his spouse. His head and gesture of hand accentuate his request for her to let him speak. They were not born married, how old can they be?

He is fit and walks upright. They have come with questions and down loads from the internet about a doctor in Valencia, Spain who stumbled upon an apparent way to treat PD with an acupuncture needle in the ear; a non- invasive approach. This sets the doctor on a tangent about how he used to refer patients to an acupuncturist for tremor, but found patients were not greatly improved and how he works with a physician who used to be a neurosurgeon in China. Though he now works with rats, the Chinese doctor described a very special type of acupuncture in which a needle is inserted through the base of the skull into the brain; it has been used to cure blindness. In this country we call that neurosurgery, the doctor tells us.

The couple wants information. Fetal cell transplants, newer drugs? It has been a year since they were here. What about stem cells? In Santo Domingo they are giving PD patients infusions of stem cells, the patient tells the clinician.

“These are issues of hope.” The doctor replies. If money is not an issue the doctor advocates 1200mg/ day of coenzyme Q10. Studies have shown some protective effects, but the pills are expensive and not covered by insurance. Azilect in place of selegiline will also improve slowing of the illness. Exercise is beneficial. The couple plans to travel to Valencia where they can obtain the Neupro patch in 8mg strength. The patch will also improve symptoms as the drug bypasses the digestive system and gets delivered through the skin continuously, avoiding pulsatile stimulation of dopaminergic neurons.

Though there is a patient in the room, the feeling is upbeat, healthy and striving. The disease has not settled in, and that is good.

Falling into Open Arms

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It seems the patient needs little provocation to fall. He fell three times on Labor Day and twice this past weekend. The wife hesitates to let him use a walker. She fears the tip- toeing will escalate with wheels in front of him; the increased velocity will drive him into a more traumatic accident. Occasionally he’ll use a cane to get around, though mostly he just loses them, his wife relates.

Six months ago the patient’s blood pressure was dangerously low. He appeared today wearing compressive socks, a former suggestion they implemented. The spouse relays they are focusing on adding salt to the diet, and she’s concerned about the thirty pounds he has lost since January. She wonders whether the action of sinemet varies with weight and the doctor shakes his head no, as he asks the patient to copy his movements with his own hands.

The doctor opens the left palm of his hand, with the right he pats the palm then flips the hand over and pats with the back of the right hand. Quickly he flips the right hand down and over, down and over onto the left palm. The patient extends his left palm as well, and with the right he makes a downward chop motion. The doctor asks whether he sees a difference in what their hands are doing. The patient concedes the doctor is doing something different and amends the chopping motion with a slap. The new action resembles slightly more of what the doctor is performing.

‘There’s an apraxia here.. It’s indicative of problems with thought..’

The wife comments she has begun to shave her husband’s face. ‘He’s losing independent function…’

In a chair opposite her husband, the wife in a shirt of pale pink exhales and shrinks into herself, apologizing as an emotional wave passes and she sobs into her clenched hand. Wanting an unbiased opinion, she sought the advice of a social worker at the VA who informed her there are 2 total care nursing homes in Hernando County, and three more in West Pasco. The patient is considered 70% disabled, so the VA system should pick up the entire bill.

Frustration in her voice, the wife related the patient was into everything. Drawers, cabinets, closets; he turns the contents out, inspecting it all, reading the smallest print on a shredded discarded napkin. It’s hard when you are the only one making all the decisions, she admits. She recalls seeing her husband standing in front of the chest of drawers, then abruptly going down and she was running to catch him. The force of his body hit her and they both fell on the floor.

The doctor faces her and tells her she must guard her own health; consider taking antidepressants as well, because they can help, even though she has appropriate reasons to feel as she does. The doctor leans back in his chair. Two things I can suggest, he holds his thumb and index finger erect. Physical therapy may help with gait and balance, though he will not learn anything new, and will retain little. Seroquel, at night will dampen the hallucinations, paranoia and delusions. During the day a smaller dose will diminish odd behaviors. As they leave the room the wife takes her husband by the hand, leading him slowly with his shuffling steps.

Patients Old and Young

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The patient wears her straight white hair short like a flapper from the thirties. While she moves randomly in her chair, her face is mobile and her dynamic presence engages all in the room.
“I don’t like to think of myself as having Parkinson’s Disease”- she tells the medical student. She uses no term to describe her dyskinesias- she simply says, “When I am like this”- gesturing towards her body. The doctor is unsure whether the movements are due to levodopa levels peaking or subsiding. He encourages the woman to keep a medication journal for several days and to bring it when she visits again. With a week’s worth of hourly details listing medications and her physical symptoms, he will be better educated to tweak her drugs and reduce the unwanted movements.
In a restaurant no one wants to sit next to her; the movements are embarrassing. She describes her children’s response to her initial session with a physician; they thought she was cured. Levodopa quieted everything.
Now balance and freezing become problematic. She takes no antidepressants. She sleeps well, with one Vesicare she wakes only once to use the toilet. The doctor recommends physical therapy, as freezing can be a source of falling incidents. Sun City- a retirement community south of Tampa is her home for the winter half of the year, by April 30th she returns to New York.
“Try and get an appointment in April, I’d like to see you before you leave.”
The medical student has long golden hair, hanging loose and straight down her back. Beneath her white lab coat, she is curvy but tall. She reports on another regular patient providing key issues of his visit. The second student, still an undergraduate, is dark, slender and intense. Thick black thick hair comes low on his forehead. When he is not commenting, he takes notes. His assertive voice and commanding attitude give him an authoritative air.
Diagnosed in his late thirties, the patient has had PD for ten years. He notes he feels weak in the legs sometimes, as if lacking the muscle strength to hold his body erect. Dramatizing this he hops from the examination table, performing several steps with bent knees. The doctor nods but has no comment.
The wife notes when very happy or sad, the medications seem to have no affect. Neither the doctor nor students provide any explanation. The physician takes the patient’s arm, testing for cogging in the wrist or elbow and comments on the patient’s muscle tone, noting he must be active. The client concedes he cuts the lawn, but maintains his bicep with fishing.
The edges of the man’s mouth droop slightly at the corners, making him appear sad. Describing his experience with Amantadine, he saw the ceiling slant downward at an angle and the floor slant upward. He felt space would compress him. His hands felt enormous and his body barely fit through the doorway.
Addressing the cost of medications, Mirapex in particular, the doctor suggests switching to Bromocriptine. Used during the seventies, it is an alternative generic option. Expressing doubt about whether it will be as effective as Mirapex, the doctor leaves the room, returning with a white bag of sample bottles.
It is four o’clock. The patient swallows a pill as the doctor explains to his wife, which cold medications may combine safely with the drugs he is taking. Soon after, the patient freezes in the hallway. He turns his wide shoulders sideways performing a maneuver he hopes will unlock his frozen feet.

PARKINSON’S CONFERENCE TO HIGHLIGHT INNOVATIVE THERAPIES AND QUALITY OF LIFE

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SARASOTA, Fla., September 28, 2012 — Nationally recognized researchers and clinicians, including fellowship-trained movement disorders specialist, Juan Sanchez-Ramos, MD, PhD and world-renowned neurosurgeon, James M. Schumacher, MD will present at this year’s Parkinson Research Foundation “Move It with Parkinson’s” educational conference on October 13. The conference will allow attendees to participate and interact with presenters on subjects ranging from medical and surgical therapy advances, to empowerment, nutrition, voice exercises, dance and other proactive ways to keep your body, mind and spirit up and moving with Parkinson’s disease.

Parkinson’s disease affects approximately 7,500 people in Sarasota and the surrounding communities. The Parkinson Research Foundation has presented annual educational conferences on a state-wide level since 2007. The conference will be held in the Fete Ballroom at the Polo Grill in Lakewood Ranch, October 13, 2012 from 8:00am to 4:00pm. A $20 per person donation is suggested with scholarships available. For more details and to register, visit  www.ParkinsonResearchFoundation.org or call 941-893-4389.

The Parkinson Research Foundation is a national nonprofit health organization. The mission of the organization is to cure Parkinson’s and to improve the lives of those living with the disease through education, support and advocacy. To fulfill this mission, the Parkinson Research Foundation funds research, publishes scientific findings, and provides funding for informational and other services to people with Parkinson’s, as well as their caregivers, families and healthcare professionals.

CROWD OF 350 GATHERS FOR GRAND OPENING OF PARKINSON PLACE

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SARASOTA, Fla., September 21, 2012—An estimated 350 patients, caregivers, and members of the healthcare community attended the grand opening reception and ribbon cutting at Parkinson Place in Sarasota on Sept. 13.

Celebrating the official grand opening of Parkinson Place, the festivities offered guests refreshments, a chance to tour the new facility, and the opportunity to meet some of the facility’s program instructors.

Parkinson Place offers a variety of education, empowerment and participation programs for patients, caregivers and healthcare providers connected to the disease.

“In our years of experience working with the Parkinson’s community here in Sarasota, we have never seen anything as exciting as the development of Parkinson Place.” said PRF Executive Director Marilyn Tait. “Parkinson Place has been designed from the ground up to be a fun and positive environment where people struggling with Parkinson’s can be proactive and engaged on a daily basis.”

Created by the Parkinson Research Foundation (PRF) in conjunction with the University of South Florida, Parkinson Place is working to provide an additional level of support and expertise to help the local medical community provide excellent care for patients living with Parkinson’s.

“Sarasota is fortunate to have such a facility and we are proud to have this opportunity to lead a program that will be followed closely by the global Parkinson’s community,” she added.

There is no cure, but people with Parkinson’s are able to enhance their quality of life through positive attitudes, lifestyle changes and individualized medical management.

“Parkinson Place brings together a nationally recognized movement disorders specialist, Dr. Sanchez-Ramos; the top regional Parkinson’s educator and advocate, Marilyn Tait; and the national resources of PRF to create a first-of-its-kind destination for the Parkinson’s community,” said PRF Chairman Larry Hoffheimer. “Our center will lead the nation in delivering the latest evidence-based programs to the community, as well as studying the effects of various programs to contribute to the body of knowledge.”

Parkinson Place is open Monday through Friday from 9:00am to 4:30pm, and membership is free.

For more information, visit ParkinsonPlace.org or call 941-893-4188.

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