Hi PD & CARE lists,
I would appreciate your efforts in completing the survey if you qualify.
Thanks.     Kim Russell

 ---------- Forwarded message ----------
Date: Fri, 19 Jul 1996 18:10:15 -0500 (EST)
From: Sandra Mora <[log in to unmask]>
To: [log in to unmask]
Subject: PARKINSO'S DISEASE SURVEY:STUDY INFORMATION (fwd)



---------- Forwarded message ----------
Date: Fri, 12 Jul 1996 19:39:55 -0500 (EST)
From: Sandra Mora <[log in to unmask]>
To: [log in to unmask], [log in to unmask],
    [log in to unmask]
Subject: PARKINSO'S DISEASE SURVEY:STUDY INFORMATION

I am doing my Master's Thesis on Parkinson's disease and part of my
thesis is a survey of PD symptoms and medications.  I will
appreciate your participation.

INTRODUCTION

Researchers have decided Parkison's disease (PD) into several different
subtypes.  Two of the main subtypes are tremor, and postural instability
and gait disorder (PIGD).  the purpose of this survey is to compare
patients whose dominant symptom is tremor with those whose dominant
symptoms are postural instability and gait disorder (PIGD).  One focus of
this survey is whether speech difficulties occur more frequently with
tremor or with PIGD.  A second focus is whether the patient's subtype of
PD impacts effectiveness of their medication regimen, and its effect on
speech.

Participation in this survey is voluntary and it can be completed by the
patient or a caregiver.  Although this survey focuses on speech, those
patients who have never had speech symptoms, or whose speech is not now a
problem are welcome to complete the survey.
For control purposes, some patients must be excluded from the survey.
This survey is intended for patients whose PD is moderate.  PLEASE DO NOT
PARTICIPATE in the survey if ANY of the following symptoms or
characteristics apply to you:

*PD symptoms on only one side of the body
*severe Parkinson's, i.e. you are confined to bed and cannot care for
yourself in any way
*depression is severe enough to affect your daily activities or it
requires anti-depression medication
*hallucinations
*dementia
*other serious medical conditions affect the patient- such as a patient
who has suffered mild paralysis following stroke.
If you are insure whether your symptoms exclude you, contact me and I'll
gladly help clarify exclusions.

The survey has been designed to be easy to complete.  There are 24
questions; most can be answered with one or a few keystrokes.  Some
questions can be answered by a number corresponding to the response.
Select the number or numbers that best answers the question for you.  You
may elaborate your answer if you wish.  If you prefer, I will gladly mail
you the survey, return postage paid, so you not respond via email.  I'd
appreciate any suggestions to make it easier for you to respond to the
survey.  It is hoped that this survey will give us a better understanding
of the factors that affect speech in people with Parkinson's disease.

**The results of this survey will be strictly confidential.  Name and
location are not asked for in the responses.**
IDs will be removed once responses are received over the Internet.
However, data sent over the Internet cannot be guaranteed
confidentiality.  The researchers will not share the identifiable
information with others, but we cannot know or promise what happens to it
over the Internet.  The information in the study records will be kept
confidential.  Data will be stored securely and will be made available
only to persons conducting the study unless you specifically give
permission in writing to do otherwise.  No reference will be made in oral
or written reports which could link you to the study.  Once results are
tabulated, I will gladly share them via email.
If you have questions about your rights as participants in research,
contact
Human Subjects Committee
SRS/RUGS
Bryan Hall Rm 10
Bloomington, IN 47405
(812) 855-3607
email: [log in to unmask]
Fax: (812) 855-9943
If you have questions at any time about the study, or the procedures, you
may contact the researcher, Kim Russell, at [log in to unmask] or
(812) 857-9014.

(1.)  What is your age?
RESPONSE (1.)

(2.)  What is your gender?
response (2.)

(3.)  How many years has it been since you were diagnosed with
Parkinson's disease?
RESPONSE (3.)

(4.)  What are your first symptoms, that is those that concerned you
enough to make you visit a doctor for an initial diagnosis?
        1. tremor in hand or arm
        2. tremor in foot or leg
        3. postural instability of gait disorder
        4. stiffness in hand or arm
        5. stiffness in foot or leg
        6. speech difficulties
        7. other
RESPONSE (4.)

(5.)  Please rate the progression of you symptoms.
        1. worsened very slowly or not at all
        2. the number of symptoms has increased
        3. the dominant symptom has changed for example, tremor
        decreased, but stiffness increased.
RESPONSE (5.)

(6.)  What is your dominant PS symptom at this time?
        1. tremor in hand or arm
        2. tremor in foot or leg
        3. postural instability or gait disorder
        4. stiffness in hand or arm
        5. stiffness in foot or leg
        6. speech difficulties
        7. masked face
        8. double vision
        9. other
RESPONSE (6.)

(7.)  Speech symptoms
        1. have never been a problem
        2. are a minor to moderate problem
        3. are a severe problem
        4. speech is a problem only in certain situations like using the
        phone or noisy situations
        5. used to be a problem, but are not now
RESPONSE (7.)

(8.)  Speech symptoms have
        1. worsened very slowly or not at all
        2. the number of symptoms has increased
        3. the dominant symptom has changed for example, breathiness
        decreased, but difficulty to begin talking increased
RESPONSE (8.)

(9.)  My speech problems from PD limit my conversation
        1. some
        2. extensively
RESPONSE (9.)

(10.)  The most troublesome speech difficulty was or is
        1. difficulty to begin talking
        2. not speaking loudly enough
        3. voice sounds breathy or weak
        4. speech sounds mumbled
RESPONSE (10.)

(11).  Parkinson's disease has effected my ability to care myself, do my
job effectively, and enjoy family and hobbies
        1. only mildly
        2. moderately
        3. I can have no spare energy for hobbies
        4. I can care for myself but have quit work and hobbies
        5. I care for myself with help
        6. others provide many of my needs
RESPONSE (11.)

MEDICATION
(12.)   The medications that you take currently were
        1. prescribed by a doctor
        2. alternative or herbal medicines
        3. both 1 & 2
        4. vitamins
RESPONSE (12.)

(13.)  I take my medication
        1. just as prescribed
        2. as prescribed, with doctor's OK to make adjustments for my needs
        3. irregularly because I often forget how much or when I last
        took it
        4. I've discounted medication because of ineffectiveness or side
        effects
RESPONSE (13.)

(14.)  My current medication(s) are
        1. Sinemet or Sinemet CR
        2. Eldepryl or Deprenyl
        3. Symmetrel
        4. Symadine
        5. Parlodel
        6. Permax
        7. other
RESPONSE (14.)

(15.)  I began taking any medication for Parkinson's
        1. at any time of diagnosis or shortly there after
        2. a year or more after diagnosis
RESPONSE (15.)

(16.)  The first medication(s) prescribed
        1. are the same type and same dose that I currently take
        2. are the same type but current dose is higher
        3. are not the medication(s) I take now
        4. my medication(s) have been changed often
RESPONSE (16.)

(17.)  My current medication(s)
        1. are effective and cause few or no side effects
        2. are effective but cause distressing side effects
        3. are not effective enough or are not effective, but cause few
        side effects
        4. are not effective enough or are not effective, and cause
        distressing side effects
RESPONSE (17.)

(18.)  Overall, on/off times
        1. have never been a problem
        2. used to be a problem, but now are easier to manage
        3. have grown progressively worse
        4. are currently one of my biggest problems with Parkinson's
        5. are a problem when I forget a dose or don't take it on time
        6. signal it's time for my doctor to adjust the dose
RESPONSE (18.)

(19.)  Medication is effective or somewhat effective for
        1. tremor but not rigidity
        2. rigidity but not tremor
        3. tremor and movement problems, but not masked face or speech or
        other problems
        response (19.)

(20.)  I have participated or currently participate in
        1. speech therapy, and it was or is helpful
        2. speech therapy, but it was or is not helpful
        3. physical therapy, and it was or is helpful
        4. physical therapy, but it was or is not helpful
        5. surgery, and it was and is helpful
        6. surgery, and it was helpful, but is no longer very helpful
        7. surgery, but it was not helpful
RESPONSE (20.)

(21.)  After I take a dose of medication, my speech usually
        1. improves within half an hour
        2. improves within an hour or more
        3. does not improve noticeably, even when my other symptoms improve
        4. improves significantly
        5. improves slightly
        6. is less effortful, but no clearer
        7. is clearer, but not less effortful
RESPONSE (21.)

(22.)  During off times, my speech usually
        1. is unaffected
        2. is slightly worse
        3. is impossible to understand
        4. is so effortful that I don't try to talk at all
        5. is less affected than my other symptoms
        6. is affected as much as my other symptoms
        7. is more affected than my other symptoms
RESPONSE (22.)

(23.)  My speech symptoms affect me most at
        1. home with my family
        2. at work
        3. during hobbies
        4. with strangers
        5. on the phone
RESPONSE (23.)

(24.)  To make it easier to communicate,
        1. I have used special equipment
        2. I use special equipment
        3. I've never needed special equipment
        4. I tried using special equipment, but quit because the
        equipment did not effectively help with my communication problems
        5. I'm unfamiliar with any type of special equipment, but I'd be
        interested in finding the right equipment for my communication
        problems, for example a device to amplify my voice
        6. I'm not interested in using special equipment
        7. I'm not interested in using special equipment, but I'd be
        interested in speech therapy to help with communication, (whether
        or not I've had therapy or equipment before)
        8. I'm interested in any means of improving communication, but
        finances and/or transportation make these services very difficult
        for me to get
RESPONSE (24.)