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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]