Dear Friends,
This URL was sent to "Ask the Parkinson Dietitian" and I thought it was
worth posting here. The information learned may not be news to those
with PD; however, the statistics and details might be useful for those
advocating for research funding, disability, etc. Best, Kathrynne
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The Difficult Lives of Patients with Parkinson's Disease
Monday October 20, 12:22 pm ET
http://biz.yahoo.com/prnews/031020/nym154_1.html

* 75% of patients report a daily three-hour average when the effects of
medication "wear off" and significant symptoms of their Parkinson's
disease (PD) return.
* While PD is usually characterized by motor complications (e.g.,
tremor), this survey reveals that two of the top three most disabling
symptoms are non-motor symptoms, including loss of energy and pain.
* Cumulative effects of increasing non-motor symptoms in PD patients are
more strongly related to negative emotion than the cumulative effects of
increasing motor symptoms.
* On average, PD patients report taking 19.25 pills per day (range: 3 to
100) and most (59%) report having difficulties swallowing.
* An ideal PD medication, PD patients say, would result in fewer side
effects, a more predictable response, and improvement in daily "off" time.

ROCHESTER, N.Y., Oct. 20 /PRNewswire/ -- A new survey of 228 patients
with Parkinson's disease explored the disabling aspects of their
disease, and how they are affected physically, psychologically and
emotionally in their daily lives. The results are not reassuring. While
their medications can improve some of their symptoms, they do not
control the symptoms all the time. The period of time when symptoms are
uncontrolled in between medication doses is known as "wearing off " or
"off " time. It is during this "off " time that patients make
accommodations to their daily activities, significantly affecting their
quality of life.

ADVERTISEMENT
This survey was sponsored by WE MOVE (Worldwide Education and Awareness
for Movement Disorders) and funded by Amarin Pharmaceuticals, a
specialty pharmaceutical company focused on bringing treatments to
market for patients with movement disorders including Parkinson's
disease and Huntington's disease.

What is Parkinson's Disease?

Parkinson's Disease (PD) is a chronic, progressive disorder of the
nervous system that occurs most commonly in the middle-aged and elderly;
only 10% of sufferers are under the age of 40. An estimated one million
Americans are believed to suffer from PD, and approximately 50,000 new
cases are reported annually. Parkinson's Disease occurs when neurons in
the substantia nigra die or become impaired. The loss of these neurons
results in a reduction in dopamine, a neurotransmitter implicated in
coordinating nerve and muscle cells involved in movement. Consequently,
PD patients suffer from a variety of motor symptoms including tremor,
rigidity, freezing, and difficulty swallowing (dysphagia). In addition,
a variety of non-motor symptoms frequently occur among PD patients,
including anxiety, depression, sleep disturbances, and sexual difficulties.

Disease History and Comorbidities

The majority of Parkinson's disease patient respondents in this survey
had been diagnosed with Parkinson's disease for just over 10 years, but
some have had the diagnosis for much longer -- up to 30 years. In
addition, all survey respondents had been diagnosed with Parkinson's
disease for a minimum of five years, as a requirement of participation
in the survey. Respondents reported a number of concomitant diagnoses
along with their Parkinson's disease, including depression (37%),
arthritis (28%), anxiety (20%) and heart disease (20%), and significant
but much smaller percentages have been diagnosed with diabetes (7%) and
osteoporosis (6%).

"Wearing-off" Symptoms and Effects

A major problem with current medications for Parkinson's disease is that
they do not control the symptoms all the time. Seventy five percent of
these patients experience an average of three hours a day in which the
effects of their medications "wear off " and symptoms of their disease
return. Although they are not the most frequently occurring symptoms,
loss of energy, walking problems and pain are the most disabling
symptoms these PD patients experience during their "off " time.
Increases in both motor symptoms (e.g., handwriting problems, overall
slowness and falling) and non-motor symptoms (e.g., loss of the sense of
smell, sleep disturbances and anxiety) are associated with higher levels
of "negative emotions," such as depression, hopelessness and anxiety.
Increases in non-motor symptoms are more strongly associated with
increases in "negative emotions." Nearly 60% of PD patients report that
they have difficulty swallowing and 44% have difficulty swallowing their
medications. This is important because PD patients take an average of 19
pills per day and in order to cope with their swallowing difficulties,
patients report having to crush their pills, dissolve them in liquid, or
skip taking their medications altogether. Most commonly, PD patients
cannot work or walk as well during "off " time, they limit their
driving, and they cut back on daily activities, such as cooking and
reading. Seven of the top 10 most frequently experienced symptoms are
motor systems. Three (loss of energy, sleep disturbances and loss of
sense of smell) are non-motor symptoms.

Which symptoms are the most disabling?

When asked to rate their symptoms according to how disabling they are, a
different picture emerges. The most disabling symptoms are not the same
as the most frequent. Loss of energy, ranked fourth in frequency,
emerges as the most disabling symptom. Handwriting problems, experienced
most frequently during "off " time ranked only 12th in terms of being
disabling. Pain and memory loss were ranked third and eighth in terms of
being disabling, but were not among the 10 most-frequently experienced
symptoms.

The impact of the "wearing off" symptoms on Parkinson's disease patients

"Wearing off " changes the way Parkinson's patients live their lives and
alters their daily routines. Patients report they cannot walk or work as
well as they would like. Also, patients cut back on their daily
activities, have difficulties getting into and out of chairs and limit
their driving. Pain and memory loss were ranked third and eighth in
terms of being disabling, but were not among the 10 most-frequently
experienced symptoms.

     Current and future treatment of Parkinson's disease
     On average:

      * These patients take 19 pills every day.
      * 60% of these pills are for Parkinson's disease and the other 40% are
        taken for other conditions.
      * These patients take medication for Parkinson's disease 4.5 times
a day.


However, these averages are based on a very wide variation in the
numbers of pills, and the frequency with which they are taken. Some
patients take up to 100 pills a day, and some take Parkinson's disease
medications 12 times a day. Most (68%) of these patients sometimes
forget to take their medications. Two out of five (41%) do so once a
week or more often. Most of these Parkinson's disease patients are at
least slightly satisfied with their treatments; 58% rate them 5, 6, or
7, where 7 is completely satisfied. Only 22% rate their treatments 1, 2,
or 3 where 1 is completely dissatisfied.

These Parkinson's disease patients would welcome many changes and
improvements to their current treatment. In particular, they would like
to take fewer pills, take them less often, and have fewer side effects
such as drowsiness and dyskinesias (involuntary movements). Furthermore
when Parkinson's patients are asked which characteristics they would
choose for an ideal Parkinson's treatment, there is a clear preference
for a treatment with minimal side effects, predictable response and
improvement in daily "off " time.

To view a downloadable pdf version of this Harris Interactive Health
Care News newsletter, go to
http://www.harrisinteractive.com/news/newsletters_healthcare.asp. The
full survey report may also be obtained by emailing:
[log in to unmask]

Methodology

This study was conducted online within the United States between August
19 and September 8, 2003 among a sample of 228 U.S. adults, aged 18
years and over, who have had Parkinson's disease for a minimum of five
years. Responses were weighted by age and gender using current U.S.
epidemiological data.

Patients with Parkinson's disease were recruited from four different
sources. The largest number of survey respondents was provided through
the People Living With Parkinson's website. People Living With
Parkinson's is a nonprofit organization founded by two Parkinson's
disease patients, and dedicated to educating and supporting Parkinson's
disease patients. The content of the online questionnaire was developed
from research gathered during a series of focus groups with Parkinson's
disease patients and with the help of medical advisors and WE MOVE, a
nonprofit organization focusing on movement disorders, including PD.

In theory, with a probability sample of this size, one can say with 95
percent certainty that the results have a statistical precision of plus
or minus 6.4 percentage points of what they would be if the entire
population of those with Parkinson's disease in the United States had
been polled with complete accuracy. Unfortunately, there are several
other possible sources of error in all polls or surveys that are
probably more serious than theoretical calculations of sampling error.
They include refusals to be interviewed (nonresponse), question wording
and question order, interviewer bias, weighting by demographic control
data and screening (e.g., for likely voters). It is impossible to
quantify the errors that may result from these factors. This online
sample was not a probability sample.

These statements conform to the principles of disclosure of the National
Council on Public Polls.


--
Kathrynne Holden, MS, RD
"Ask the Parkinson Dietitian"  http://www.parkinson.org/
"Eat well, stay well with Parkinson's disease"
"Parkinson's disease: Guidelines for Medical Nutrition Therapy"
http://www.nutritionucanlivewith.com/

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