kimberly russell wrote:
>
> Hi Parkinson's list,
> I'd appreciate your help completing the survey if it applies. 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.) 71
>
> (2.) What is your gender?
> response (2.) M
>
> (3.) How many years has it been since you were diagnosed with
> Parkinson's disease?
> RESPONSE (3.) 3.5 yrs (now I recognoze that I have had symptoms for about 7 yrs)
>
> (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
> X 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.) 3
>
> (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.) 2 ( and the dominant symptom is much worse)
>
> (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.) 3
>
> (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.) 2
>
> (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.) 1
>
> (9.) My speech problems from PD limit my conversation
> 1. some
> 2. extensively
> RESPONSE (9.) 1
>
> (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.) 3 (or all of the above
>
> (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.) 5
>
> 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.) 4
>
> (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.) 4
>
> (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.) NONE
>
> (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.) 1
>
> (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.) 4 ( tried them all, none worked)
>
> (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.) I take no medications
>
> (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.) none of the above
>
> (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.) 4
>
> (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.) 5

--
Milo V. Anderson, Ph.D.
Box 417
Angwin, CA 94508

voice 707 965 2508
fax 707 965 3148
e-mail [log in to unmask]