-- Norman Ichiyen wrote:
> A fellow support group member is trying to appeal a decision in Canada for getting a disability pension for her husband who has PD.  She needs
referenceable material that relates to the length of time that symptoms
can be present before a formal diagnosis is made.

Norm,
        I found this. I don't know if it will be helpful or not...

http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/Main/YOPD_Handbook/CHAPTER_8.html

Young Parkinson's Handbook

Chapter 8: Psychological Issues

J. Thomas Hutton, M.D., Ph.D., F.A.C.P.
Trudy Hutton, J.D.

Introduction

The patient with Parkinson's disease may be affected by psychological
changes which can be as important as the physical changes in
understanding and living with the disease. In general, the
psychological factors which affect the patient may be thought of as both
internal and external, and determine how well the patient copes with PD.
Some changes which may occur can be directly attributed to alterations
in the brain's chemical messengers and selective loss of brain cells.
Others can be seen as reflections of external factors and the
individuals' reactions to them. How the patient responds to the
pressures of his or her world with this chronic neurological condition
is an example of these external factors. PD can also have a significant
impact on family and friends which, in turn, can affect the patient's
outlook. Some patients see PD as a "challenge", while others see it as a
"problem". For the Young Onset Parkinson Disease (YOPD) patient in
particular, the external issues can create tremendous challenges.

{{PD usually has an insidious onset with the patient experiencing
nothing more than a feeling of being uneasy, out of sorts, unusually
fatigued or suffering vague aches and pains. Besides being nebulous and
difficult to define, these vague symptoms tend to come and go. Small
physical disabilities which may appear are more of a nuisance than
recognizable as a symptom. Complaints of not being able to perform fine
motor tasks such as buttoning a child's shirt or braiding a child's hair
may not seem connected to muscle aches or an occasional loss of balance.
These subtle symptoms and minor physical impairments may go unnoticed
and certainly unlinked for quite some time. One may attribute the uneasy
feeling to some family or work related events. Depression may not be
recognized as a symptom of a movement disorder. PD tends to sneak up on
its victims, coming on imperceptibly in small degees. The apprehension
and distress caused by being "not quite one's self" but not
recognizing any obvious physical peculiarity is a common symptom
described by Parkinson's patients.

Because of PD's insidious onset and the often slow progression for many
months or years, it is not uncommon for one to ignore its symptoms and
fail to seek medical care. Many times the patient denies any serious
problems. This is understandable because denial is a form of
self-protection. However, as the symptoms progress and the patient
experiences increased physical limitations, the troubles become
psychologically harassing as well as physically frustrating. The
sufferer finds himself caught between denial of any problem and fear and
worry about what the problem might be. It is at about this point that
the opinion of a physician is sought.}}

The diagnosis of Parkinson's may come simultaneously as a relief and a
shock. One feels some relief in finally being able to put a diagnosis
with the vague symptoms, and at the same time shock or distress at
having a chronic, progressive neurological illness. The future may seem
jeopardized by uncertainty. What will one be able to do? Is it possible
to continue to work? Can one still function as a nurturing parent and
spouse? What kind of medical bills may occur? Will insurance be
available? The patient may experience a roller coaster of emotions as
both patient and family come to terms with the diagnosis.

Judith
--
Judith Richards, London, Ontario, Canada
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