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.) (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.)