Monthly Archives: January 2010

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.

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.