Category Archives: Parkinson’s

Maintaining Hope (in living with Parkinson’s)

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This short article on “Maintaining Hope” while living with Parkinson’s Disease was
published in the Fall 2005 APDA (American Parkinson Disease Association) Newsletter.
Though it’s about Parkinson’s Disease, the article certainly applies to any disorder.

Robin

http://www.apdaparkinson.org/data/NewsLetterUpload/APDAFal2005newest.pdf –> article on page 1

Maintaining Hope
by Linda O’Connor, LCSW
Coordinator APDA I&R Center, Los Angeles, CA
American Parkinson Disease Association
Fall 2005 Newsletter

In my work as the Coordinator of the Los Angeles APDA Information and Referral Center at Cedars-Sinai Hospital, I
have the opportunity to talk with people diagnosed with Parkinson’s disease (PD) and their family members every day, and one of the most significant aspects of our contact often centers on the subject of “hope”. Sometimes it is spoken, and often unspoken, but the question of hope is always present in some way.

Living with PD is challenging, both physically and emotionally for the person who has been diagnosed, as well as for family members. In difficult times it becomes vital to have something to hold on to, and in my opinion, one of the best things is hope. Because having hope can be such a powerful tool to assist with coping, it is certainly worth
further exploration and understanding.

Defining Hope
According to the dictionary, hope is: “A desire accompanied by expectation of or belief in fulfillment; also expectation of fulfillment or success.” Richard Lazarus, a psychologist who has done a great deal of study and writing on hope, defines it this way: “To hope is to believe that something positive, which does not presently apply to one’s life, could still materialize, and so we yearn for it. Although desire is an essential feature, hope is much more than this because it requires the belief in the possibility of a favorable outcome.”

The fact that having the diagnosis of PD brings with it so much uncertainty, and because you don’t know absolutely for sure what will happen next, this creates the possibility that something good may happen, and that possibility makes room for hope.

No one’s future is absolutely foretold, so while there may be reason to fear, there is also great reason to hope.

Hope as a Coping Process
Maintaining a hopeful attitude can be an extremely helpful coping strategy. First it produces action. Studies have shown that hope can galvanize efforts to seek improvement of an unfavorable situation. Without hope we are unlikely to act on our own behalf. Hope combines yearning for something better with the belief that our actions could help to bring about the outcome we want.

Hope is why people seek information about Parkinson’s disease and its treatment. Hope is why people become actively involved in getting the best treatment possible. Hope is why people exercise, concentrate on good nutrition and focus on stress management. Hope is why people connect with each other for support or do advocacy work or enroll in clinical trials. Hope is why people don’t give up, even in some of the most difficult situations. It keeps us engaged with life.

The second way that hope aids coping is that it serves as a vital resource against despair. The best defense we have against despair and the depression that accompanies it is hope.

Cultivating Hope
Because hope partly involves our thought process, it is possible to make very deliberate, conscious decision to be hopeful. Now this may not happen overnight, and it may not work every single day, especially if you’re having a particularly bad day, BUT… it is worth trying to focus on maintaining an overall hopeful attitude as much as possible.

“The Placebo Effect” (in Parkinson’s)

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In 2009 I attended a Stem Cell Awareness Day at The Parkinson’s Institute in Sunnyvale. All of the MDs were asked about stem cell treatment for Parkinson’s Disease, and why some people who go to China or Germany or where ever for stem cell therapy report improvements.

The MDs all pointed to the placebo effect. And they said that the bigger the intervention, the bigger the placebo effect. One example of this was a UCSF gene therapy trial from 2008 where the placebo group (who received no surgery but did get a hole drilled in their skull) had greater motor improvement in comparison to the treatment group (who got the gene therapy surgery).

Dr. Melanie Brandabur of The PI also noted that the placebo effect is not psychological alone. She said that the brains of Parkinson’s patients who receive these experimental treatments are somehow able to produce a bit more dopamine, demonstrating physiological changes.

A few people with multiple system atrophy have reported on the online MSA-related support groups that they’ve gone outside the US for stem cell therapy. Only one person has reported sustained good results. One gentleman recently reported that he concluded his wife experienced a placebo effect after her stem cell treatment in Germany.

Here’s an article about the placebo effect — a general look at the effect and then a specific look at how it occurs in Parkinson’s Disease drug trials.

Robin

http://www.apdaparkinson.org/data/NewsLetterUpload/APDAFal2005newest.pdf –> article on pages 10-11

Drugs Trials — The Placebo Effect
By J. Stephen Fink, MD, Ph.D.
American Parkinson Disease Associatio Newsletter
Fall 2005

A medication may have several effects on a patient. Some effects may be directly related to the medication’s effect on the body’s functions, which is called the pharmacological effect.

Another effect of a medication may not be linked directly to the medicine’s pharmacological effect. This is called the placebo effect. A placebo effect can be observed when a pharmacologically inactive substance is administered.

What is the placebo effect, what does the placebo effect have to do with the process of developing new treatments or new medications in controlled clinical trials, what is the importance of the placebo effect for clinical trials in Parkinson’s disease?

The word placebo comes from the Latin verb “placere,” that means, “to please.” Placebo is an inactive treatment and the placebo effect is the effect (usually beneficial) resulting from the administration of an inactive substance. When a patient receives any treatment (whether it is active or not) there may be a beneficial effect experienced by the patient just because there is an expectation of benefit. Placebo effects can result simply from contact with doctors or other health care providers, even in the mere act of interviewing or examining a patient. There may also be beneficial effects of additional treatment or improved care provided during the clinical trial of a new medication.

In addition to expectation of benefit, other contributors to this improvement in patients’ symptom scores may include the tendency for patients to enter trials when their symptoms are worse, and “bias” in the rater’s scoring of patients symptoms.

The beneficial effect resulting from the act of receiving treatment may be quite powerful and long lasting. For example, in some studies of asthma and pain, there was improvement of 30-40 per cent in subjects given placebo
(inactive) medications. The beneficial effect of receiving any treatment is not limited to medications, as the
expectation of benefit alone may lead to improvement in symptoms after surgical procedures as well.

The placebo effect can interfere with the assessment of whether a new medication or treatment is really beneficial.
Therefore, when new medications are tested, they are commonly compared to an inactive treatment (placebo); this is a placebo-controlled trial.

When neither the patient nor the examiner knows whether the patient is receiving active treatment or placebo, the
trial is referred to as “double-blind.” When the subjects are assigned to active treatment or placebo groups by chance, this is called a randomized trial. Randomized, double blind, placebo-controlled trials offer the most effective way to control for the placebo effect and have become the “gold-standard” in clinical trial design for assessing new drugs or treatments. For a new medication or therapy to be considered effective, it must be shown to be better than a placebo in a double-blind, randomized, placebo-controlled trial. Sometimes therapies that are thought to be effective are no better than placebo when tested in this type of trial.

Long lasting placebo effects have been reported in Parkinson’s disease. In some medication trials improvement in motor scores of 20-30 per cent in patients assigned to the placebo group has been observed for up to 6 months. Similarly, improvement and deterioration in Parkinson’s disease patients have been observed after the introduction and discontinuation, respectively, of placebo medication.

Placebo effects appear to be particularly evident in the clinical trials of surgical therapies. In the double blind, clinical trial of human fetal transplantation in Parkinson’s disease conducted by Fahn, Freed and colleagues, the control group received an “imitation” surgical procedure. Several of the patients in the control group rated themselves improved one year later. Similarly, 30 per cent improvement in motor scores in the placebo control (imitation surgery) patients was observed in the double-blind trial of porcine mesencephalic tissue. In this trial, improvement in the control group lasted at least 18 months, longer than had been previously observed in clinical trials of medications, suggesting that placebo effects may be stronger in clinical trials of surgical therapies.

What causes the placebo effect? It is not possible to test adequately for placebo effects in laboratory animal experiments because animals are not known to have responses to placebo. It has been assumed that the placebo
response is not mediated directly through a physical or chemical effect of treatment. However, a remarkable study by Jon Stoessl and colleagues demonstrated that the placebo effect in Parkinson’s patients was accompanied
by a release of brain dopamine from the remaining midbrain dopaminergic cells. This suggests that the improvement in motor function that is observed in the placebo groups of clinical trials in Parkinson’s patients might be due, in part, to actual physiological changes in the damaged brain dopamine nerve cells.

In summary, the placebo effect is important in the testing of new medications for Parkinson’s disease. It dictates
the design of clinical trials of new medications by the inclusion of placebo groups. The placebo effect might be considered to “benefit” those Parkinson’s disease patients who join clinical trials and are assigned to the placebo group, as they may demonstrate improvement in symptoms. Indeed, some of this improvement in symptoms in the placebo group may actually be due to beneficial changes in brain dopaminergic nerve cells.

This perspective underscores the often-spoken adage at Parkinson’s disease centers: “One of the best things to do when a patient first learns of the diagnosis of Parkinson’s disease is to join a clinical trial.” Among the many benefits of such participation may be the placebo effect!

Adapted from “The Placebo Effect in Clinical Trials” by Stephen Fink, MD, Ph.D. in the Summer 2005 Young Parkinson’s Newsletter.

Planning for the End of Life: The Role of Hospice in PD Care

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This new two-page Parkinson’s Disease Foundation publication was mentioned today during the “Care for the Caregiver” webinar. Though the title refers to PD and PDF is the publisher, I don’t think there’s anything here that is PD-specific. I especially liked the section on “How Should Hospice be Discussed with a Loved One?” though I thought it was too brief. I also liked the list of “Questions to Ask When Considering Hospice” but felt that some suggestions should’ve been provided for each question.

One note: it’s mentioned below that private health insurance may provide hospice benefits. Many insurance companies limit hospice benefits to a lifetime maximum of 6 months. One CBD family I know of in Arizona exhausted that benefit. Fortunately a non-profit hospice agency is providing free hospice care to this family.

http://www.pdf.org/pdf/fs_parkinson_rol … ice_09.pdf

Planning for the End of Life: The Role of Hospice in Parkinson’s Disease Care
Parkinson’s Disease Foundation
Fact Sheet, 2009

As Parkinson’s disease (PD) progresses into the advanced stages, its symptoms can often become increasingly difficult to manage. The daily care needs for a person with PD may overwhelm the family caregiver’s physical, mental and emotional capabilities and require more help than the caregiver alone can provide.

In such situations, hospice can be an option. Although hospice is often associated with a terminal disease such as cancer, it is an option for individuals with chronic diseases, such as PD. Hospice can provide services and support with the goal of providing a quality, peaceful death while allowing the person with PD to stay in a familiar environment.

What is Hospice?
Hospice is a program of care designed to improve quality of life through pain relief and symptom management for individuals who are
facing the end of life. It can also provide valuable caregiver and family support with bereavement services for up to 11 months after the death of a loved one.

What Benefits Will Hospice Provide for a Person and Family Living with Parkinson’s Disease?

Hospice care is provided through home care agencies or in a facility (nursing home or hospice facility). Home hospice services are the most common type of hospice service used by a person with Parkinson’s and offer the opportunity for the individual to remain at home during his or her last days and months of life surrounded by friends and family.

Hospice care provides a person with PD, his or her caregiver and family with health care providers who have expertise in the complex dying process. The core home hospice staff is comprised of a physician, nurse, social worker and home health aides. Other personnel may include physical, occupational and speech therapists, and pastoral services.

Hospice may also provide durable medical equipment, medical supplies,medications and counseling. Other services may be provided depending on the needs of the person with PD and the structure of the home hospice agency.

When is the Right Time for Hospice?
Determining when the time is right to consider hospice services can be a difficult decision for the person with Parkinson’s, their family and health care providers. Parkinson’s, while a chronic and progressive disease, has a course that can be uncertain with no clear indication of the end of life. Yet, those with PD often have additional significant medical problems — such as advanced dementia,
recurrent pneumonia, weight loss, urinary incontinence, infections and pain — that could be better managed through hospice.

Current Medicare benefit guidelines ask health care providers to project that an individual has six months or less to live to enroll in
Medicare reimbursed hospice programs. However, many individuals live beyond six months while enrolled in hospice. At the end of the initial six-month period, the hospice agency will reevaluate the care plan and needs of the person with Parkinson’s and either reenroll the individual for an additional three months or discharge the individual from hospice. Patients are discharged from hospice if the individual improves and doesn’t meet the criteria any longer.

How Should Hospice be Discussed with a Loved One?
There are four parties involved in enrolling a person in hospice and managing end-of-life care: the family/caregivers, the person with Parkinson’s, the hospice agency and the health care provider.

Hospice often has negative associations for individuals and is thought to be a sign of “giving up” or accepting “no hope.” Overcoming these negative associations is an important first step in having the conversation about the benefits of end-of-life care in hospice. Discussing end-of-life issues is difficult and often avoided. As part of the care team, individuals with PD, caregivers, and health care providers can participate equally in ongoing discussions about planning for end-of-life care.

How Does One Pay For Hospice?
Private health insurance may provide hospice benefits. Medicare does provide hospice coverage. More information on Medicare hospice benefits can be found at http://www.medicare.gov/publications/Pubs/pdf/02154.pdf.

What is the Application Process for Home Hospice Services?
Physicians initiate the enrollment process for a person with PD by making a referral to a hospice agency. Families can have input in the selection of the hospice agency by getting recommendations from outside resources (i.e., support groups) or by researching local hospices. The National Association of Home Care and Hospice provides information on how to locate hospice services at www.nahc.org/home.html.

Once the doctor has sent a referral to the hospice agency, a hospice nurse will come to the home for an initial assessment to determine if the person with PD is eligible for hospice. If the individual qualifies, he or she will be evaluated for their specific needs,
types of services, frequency of care and equipment.

Is Hospice the Only Option?
Not all people with Parkinson’s will decide to enroll in a hospice program for end-of-life care. There are alternatives to hospice. Persons with PD and caregivers who are not ready for hospice services but who need assistance with care might consider respite services, nursing home placement or home health aides to assist with care.

Respite care is a temporary care service that provides patients with care based on his or her needs and allows a break for the caregiver. Nursing homes or assisted living facilities may offer respite services. Often a caregiver uses this time for his or her own health care or to visit family members or friends that live at a distance. Nursing home placement is an option for persons who need full-time care that the caregiver or family is not able to provide in the home.

Questions to Ask When Considering Hospice:
1. Does the person with PD understand his or her prognosis and health care needs?
2. Does the person with PD want to remain at home until the end of life?
3. Has the family, caregiver and person with PD discussed long-term care options?
4. Has the person’s health care provider been consulted in planning for end­of-life care?
5. Is there a living will and/or power of attorney in place for the person with PD?
6. If the person with PD is unable to communicate their wishes for end-of-life care, can someone represent their wishes for end-of-life care?
7. How much does the person with PD know about hospice and how does he or she feel about it?
8. Does the person with PD have insurance or is he or she Medicare-eligible for hospice care?
9. What other resources can be used to ease caregiver burden?

Eileen Hummel, R.N., B.S.N., and HeidiWatson, R.N., B.S.N., are Clinical Nurse Coordinators at the Philadelphia VA PADRECC (Parkinson’s Disease Research, Education and Clinical Center). This fact sheet has been reviewed by Lisette Bunting-Perry, M.Sc.N., R.N., Assistant Clinical Director, PADRECC and Barbara Habermann, Ph.D., R.N.,Associate Professor, Indiana University.

To find additional resources for managing advanced Parkinson’s disease, visit www.pdf.org/en/resourcelink or order a copy of PDF’s Parkinson’s Disease Resource List at (800) 457-6676 or www.pdf.org/en/brochures.

If you have or believe you have Parkinson’s disease, then promptly consult a physician and follow your physician’s advice.
This publication is not a substitute for a physician’s diagnosis of Parkinson’s disease or for a physician’s prescription of drugs, treatment or operations for Parkinson’s disease.

“Cognitive Dysfunction in Parkinson’s” – Dr. Marsh presentation

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Geriatric psychiatrist Laura Marsh, MD, gave a wonderful presentation at last
week’s APDA/NPF Young Onset Parkinson’s Conference on the topic of cognitive
dysfunction in Parkinson’s Disease.  The presentation is likely of interest
to those in our Lewy Body Dementia group as well.

Dr. Marsh reviews the prevalence, pathophysiology, clinical characteristics,
and treatment of cognitive dysfunction in PD. She also describes much of the
research into cognitive issues and PD. (Dr. Marsh is the author of much of the
research!)

The conference was recorded.  You can find the video/audio recording here:

event.netbriefings.com/event/youngparkinsons/Archives/jointconf1009/Viewer/wmpviewerP004c.html

You can find a PDF of Dr. Marsh’s slides here:

event.netbriefings.com/event/youngparkinsons/Live/jointconf1009/materials/youngparkinsonsyou002-04.pdf

I hope you enjoy the presentation as much as I did!

Vietnam Vets, Agent Orange, and PD

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An article in yesterday’s New York Times might be of interest to Vietnam
War vets with neurodegenerative disorders… .

www.nytimes.com/2009/10/13/us/politics/13vets.html

October 13, 2009
Door Opens to Health Claims Tied to Agent Orange
By James Dao
New York Times

Under rules to be proposed this week, the Department of Veterans
Affairs plans to add Parkinson’s disease, ischemic heart disease and
hairy-cell leukemia to the growing list of illnesses presumed to have
been caused by Agent Orange, the toxic defoliant used widely in Vietnam.

The proposal will make it substantially easier for thousands of
veterans to claim that those ailments were the direct result of their
service in Vietnam, thereby smoothing the way for them to receive
monthly disability checks and health care services from the department.

The new policy will apply to some 2.1 million veterans who set foot
in Vietnam during the war, including those who came after the
military stopped using Agent Orange in 1970. It will not apply to
sailors on deep-water ships, though the department plans to study the
effects of Agent Orange on the Navy.

The shift underscores efforts by the secretary of veterans affairs,
Eric Shinseki, a retired Army chief of staff and a Vietnam veteran
himself, to reduce obstacles to sick or disabled veterans’ receiving
benefits. The department has come under sharp criticism from Congress
and veterans groups for long delays in processing disability claims.

“Since my confirmation as secretary, I’ve often asked why, 40 years
after Agent Orange was last used in Vietnam, we’re still trying to
determine the health consequences to our veterans who served in the
combat theater,” Mr. Shinseki said in a statement. “Veterans who
endure a host of health problems deserve timely decisions.”

The veterans department already recognizes more than a dozen
conditions as being presumptively connected to Agent Orange exposure
in Vietnam, including Hodgkin’s disease, prostate cancer and Type 2 diabetes.

But for diseases not on that list, veterans are required to provide
evidence directly relating their service in Vietnam to their illness,
a requirement that often leads to application rejections and prolonged appeals.

Veterans department officials estimate that about 200,000 veterans
might seek benefits under the proposed change in policy. But they
said they could not estimate the cost of the change until the policy
underwent public review and was published in final form, which could
take several months.

Mr. Shinseki’s decision is a victory for groups like Vietnam Veterans
of America, which has been pushing the department to add Parkinson’s
disease, ischemic heart conditions and hypertension to the list of
diseases presumptively linked to Agent Orange.

But the new policy is also likely to prompt debate over how much
responsibility the federal government should take in compensating and
caring for aging veterans who are exhibiting a growing list of
physical and psychological problems.

The most common of the three illnesses, ischemic heart disease,
restricts blood flow to the heart, causing irregular heartbeats and
deterioration of the heart muscle.

Parkinson’s disease is associated with a loss of cells that secrete
dopamine, a brain chemical essential for normal movement. Patients
develop tremors, rigid posture, impaired balance and an inability to
initiate movement.

Hairy-cell leukemia, a rarer condition, is a slow-growing cancer in
which the bone marrow produces too many infection-fighting cells,
lymphocytes, that crowd out healthy white blood cells, red blood
cells and platelets.

Agent Orange, named after the color-coded band on storage drums, was
the most common herbicide used in Vietnam to clear jungle canopy and
destroy crops. It contained one of the most toxic forms of dioxin,
which has since been linked to some cancers.

Aides said Mr. Shinseki’s decision was influenced by a report
released in July from the Institute of Medicine that found “limited
or suggestive evidence” of an association between exposure to
herbicides and an increased chance of Parkinson’s disease and
ischemic heart disease in Vietnam veterans. The report also found
“sufficient evidence,” a stronger category, of an association between
herbicides and hairy-cell leukemia.

The report, written by a 14-member panel appointed by the institute,
was based on a review of scientific literature. The institute is
required by Congress to monitor the health effects of herbicides used
in Vietnam and produce updates every two years.

In its report, the panel warned that there was a paucity of
epidemiological data about Vietnam veterans. As a result, the panel
said, its findings did not represent “a firm conclusion” about
herbicides and Parkinson’s and herbicides and ischemic heart disease.
It said it could not estimate the chances of veterans’ developing
either disease.

Despite those caveats, the Institute of Medicine report has been
cited by veterans advocates as providing sufficient evidence to
justify a rule change. Under laws governing Agent Orange policies for
veterans, the department cannot make benefits decisions based on
cost, only on the scientific evidence. Aides to Mr. Shinseki said the
Institute of Medicine report provided that evidence.

Some doctors and researchers say the expansion of Agent Orange
benefits has been based on weak or inconclusive science, given the
lack of studies on Vietnam veterans. Those skeptics argue that
diseases like prostate cancer or Type-2 diabetes are just as likely
the result of aging, lifestyle or genetic predisposition as exposure
to Agent Orange.