"I have read the particpant information sheet and I do not have any questions about participation. I voluntarily consent to participate in this study. I understand that future quesions I may have about the research or about my rights as a participant will be answered by study staff at 425-602-3306 or neuroresearch@bastyr.edu."
Do you consent to participate?
By consenting online, you no longer need to sign and mail in a paper copy of the consent form. Yes
No
TO SAVE YOUR INFORMATION & RETURN AT A LATER TIME:
Scroll to the end of the survey and click on the "Save Record" button. Unsaved data will be lost! Who is completing this survey? 1. Person with Parkinsonism/ Parkinson's disease (PWP)
2. Friend/ caregiver, in the presence of PWP (for instance, if motor symptoms make keyboard use difficult, or if PWP is not comfortable on computer.)
3. Other
Please describe who is completing this form and your relationship to the PWP:
Create a PATIENT RECORD ID:
In the box to the right, please fill in as follows:
1st letter of your first name: _______
1st letter of your second name: _______
1st letter of your mother's maiden name: _____
1st letter of your city of birth: _______
Last two digits of your birth year: ______* must provide value
First Name* must provide value
Last Name* must provide value
Street address* must provide value
City* must provide value
State* must provide value
Zip code* must provide value
Email* must provide value
Phone
Today's Date
Today M-D-Y Date of Parkinson's diagnosis?
Today M-D-Y What is the approximate month, day, and year that you first began having motor symptoms related to PD, even before your diagnosis?
(If you don't know the date, choose the 15th of the month.)
Today M-D-Y What is your diagnosis?* must provide value
Parkinson's disease/ Idiopathic Parkinson's disease (PD)
Parkinsonism
Multiple system atrophy (MSA)/ Shy-Drager syndrome
Progressive supranuclear palsy (PSP)
Corticobasal degeneration (CBD)
Dementia with Lewy bodies (DLB)
Pick's disease
Olivopontocerebellar atrophy (OPCA)
Other
If other, please describe:
Over the past 6 months, would you say your disease has: Improved Been stable Worsened
Which stage best represents your disease? 1-sided symptoms only, minimal disability Both sides affected, balance is stable Mild to moderate disability, balance affected Severe disability, able to walk and stand without help Confinement to bed or wheelchair unless aided Don't know
Slowness* must provide value
Tremor* must provide value
Sense of balance* must provide value
Fatigue* must provide value
Daytime Sleepiness* must provide value
Motivation & Initiative* must provide value
Constipation (incomplete bowel empyting)* must provide value
Walking* must provide value
Rising from seated position* must provide value
Dressing, Eating, Grooming* must provide value
Freezing* must provide value
Falling* must provide value
Handwriting & Typing* must provide value
Drooling* must provide value
Speech* must provide value
Visual disturbance* must provide value
Muscle cramping, pain, or aching* must provide value
Restless Legs- Urge to move legs in order to stop unpleasant sensations* must provide value
Sleep behavior disorder (e.g. acting out dreams)* must provide value
Insomnia (inability to sleep)* must provide value
Sense of smell* must provide value
Nausea* must provide value
Depression (feeling sad, blues)* must provide value
Anxiety* must provide value
Loss of Interest * must provide value
Dizzy on standing* must provide value
Stooped posture* must provide value
Memory/ Forgetfulness* must provide value
Comprehension* must provide value
Sexual dysfunction
(loss of libido, erectile dysfunction, difficulty with orgasm)* must provide value
Urinary symptoms
(dribbling, urgency, incontinence)* must provide value
Dyskinesia
(Rocking, writhing, twisting, squirming movements associated with medication)* must provide value
Hallucinations or Delusions
(seeing things that aren't there)* must provide value
PRO-PD Score View equation
Please mark box if you have taken any of the following consistently over the past 6 months. Alpha-Lipoic acid
Coconut oil
Vitamin B12 (methylcobalamin, cyanocobalamin)
Vitamin C
Calcium
Vitamin D
CoQ10
DHEA
Estrogen
Fish Oil
NADH
Gingko biloba
Glutathione, oral
Glutathione, intranasal
Inosine
Iron (Fe)
Lithium, low dose
Marijuana (edible)
Marijuana (inhaled)
Melatonin
Probiotics
Quercetin
Resveratrol
Rubidium
Homocysteine Factors (B6, B12, folic acid, betaine)
Turmeric/ curcumin
5 methyltetrahydrofolate (5-MTHF)
Multivitamin/ Mineral
N-acetyl cysteine (NAC)
Low dose naltrexone
Mucuna
Fava beans
Asea
Dance for PD
Tremble Clefs program
Lee Silverman Voice Treatment
Music Mends Minds
Have you followed any of these diets consistently in the last 6 months? (check all that apply) Anti-inflammatory diet
Calorie restriction
Ketogenic
Paleo diet
Low-carbohydrate
Low-fat
Low-protein
Vegan (no dairy, eggs, or meat)
Vegetarian
Wahls diet
Allergy Avoidance (avoid foods you've been shown to make antibodies to)
No dietary restrictions
Other
What type of vegetarianism? Vegetarian, lacto-ovo (dairy and eggs, no meat) Vegetarian, ovo (eggs, no dairy or meat)
What diet do you follow?
Music
Please mark box if you have consistently engaged in the activity over the past 6 months Listen to music
Play an instrument
Singing
Dancing
Writing music
Reading music
On how many of the last seven days did you participate in at least 30 minutes of physical activity? 0 1 2 3 4 5 6 7
What kind of physical activity? (check all that apply) Swimming
Running
Biking
Hiking
Yoga
Dance
Walking
Climbing
Tai chi
Brian Grant Foundation Powering Forward Boot Camp
Silver Sneakers FLEX Parkinson's Cycling Program
Rock Steady Boxing
Other
The Daily Dose â„¢
The Parkinson's Fitness Project â„¢
What "Other" activity do you do?
For how long did you participate?
(number of minutes per week, total)
At what intensity level did you engage, on average, while doing the activity? 1- barely moving
2
3 - increased heart rate, breaking a sweat
4
5- maximum effort
In general, would you say your health is:... Excellent
Very good
Good
Fair
Poor
In general, would you say your quality of life is:... Excellent
Very Good
Good
Fair
Poor
In general, how would you rate your physical health?... Excellent
Very Good
Good
Fair
Poor
In general, how would you rate your mental health, including your mood and your ability to think?... Excellent
Very Good
Good
Fair
Poor
In general, how would you rate your satisfaction with your social activities and relationships?... Excellent
Very Good
Good
Fair
Poor
In general, please rate how well you carry out your usual social activities and roles. (This includes activities at home, at work and in your community, and responsibilities as a parent, child, spouse, employee, friend, etc.)... Excellent
Very Good
Good
Fair
Poor
To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair?... Completely
Mostly
Moderately
A little
Not at all
How often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?... Never
Rarely
Sometimes
Often
Always
How would you rate your fatigue on average?... None
Mild
Moderate
Severe
Very Severe
How would you rate your pain on average?... 1 No pain
2
3
4
5
6
7
8
9
10 Worst imaginable pain
Have you ever been told, or suspected yourself, that you seem to 'act out your dreams' while asleep (for example, punching, flailing your arms in the air, making running movements, etc.)? Yes
No
Have you smoked at least 100 cigarettes in your ENTIRE LIFE? Yes
No
How old were you when you FIRST started to smoke fairly regularly?
Do you NOW smoke cigarettes every day, some days, or not at all? Every day Some days Not at all Don't know
How long has it been since you quit smoking cigarettes? (enter number here and unit of time below)
How long has it been since you quit smoking cigarettes? (Time period) Days
Weeks
Months
Years
Don't know
On the average, how many cigarettes do you now smoke a day?
On how many of the PAST 30 DAYS did you smoke a cigarette?
On the average, when you smoked during the PAST 30 DAYS, about how many cigarettes did you smoke a day?
During the PAST 12 MONTHS, have you stopped smoking for more than one day BECAUSE YOU WERE TRYING TO QUIT SMOKING? Yes No Don't know
To the best of your ability, please describe the jobs you have held, the work required during your employment, and any potential environmental exposures encountered as part of your work?
(If you have answered this question before, only answer this question if your employment history has changed.)
I eat most meals at home. True
False
I cook most of my meals. True
False
I routinely prepare meals for others. True
False
It is difficult to afford groceries. True
False
I find it difficult to afford healthy food. True
False
I buy food from local farmers (co-op, farmer's markets). True
False
I try to eat organically grown foods when possilbe. True
False
I am a vegetarian. True
False
I avoid beef. True
False
I avoid pork. True
False
I avoid dairy. True
False
I avoid soda. True
False
I avoid artificial sweeteners. True
False
I avoid sugar. True
False
I avoid artificial colors, flavors, etc. True
False
I go to church. True
False
I pray. True
False
I have lots of friends. True
False
I am lonely. True
False
I practice calorie restriction. True
False
I am overweight. True
False
I use spices liberally. True
False
I meditate. True
False
I smoke tobacco. True
False
I use marijunana.
(You may skip this question if you don't feel comfortable answering.) True
False
I have a lot of stress. True
False
I can name 6 foods on the dirty dozen. True
False
I practice stress management. True
False
I have amalgam (silver) fillings. True
False
I have gold crowns. True
False
I have had root canals. True
False
I am a veteran True
False
I have pets. True
False
I am in a support group. True
False
I read a fictional book. True
False
I read an educational book. True
False
I find it difficult to care for myself. True
False
I have had deep brain stimulation surgery (DBS). True
False
Your date of birth:* must provide value
Today M-D-Y Gender Male
Female
Zip Code
Weight (lbs)
Height (inches)
What is your current marital or partnership status? Married
Divorced
Single
Domestic partnership
Other
Race / Ethnicity: Caucasian
Black
Hispanic
Native American
Asian / Pacific Islander
Other
What is your natural hair color? Black
Blond
Brown
Red
Other
Complementary & alternative therapies (CAM)
(supplements, vitamins, etc.)
Conventional therapies
(co-pays, uncovered prescriptions, etc.)
Activity costs
(gym, classes, memberships, etc.)
Highest grade level completed:
Less than 8th grade
Grades 9-11
Completed High School/GED
Technical school certification
Associate Degree
Bachelors Degree
Graduate / Professional degree
What is your family's income in past 12 months? (Select all that apply.) Less than $20,000
Between $20-40,000
Between $40-60,000
Between $60-80,000
Between $80-100,000
Between $100-150,000
More than $150,000
How many miles is your home from the
nearest highway?
How many miles is your home from the
nearest agricultural area?
Have you ever lived somewhere where you were on a well? (drank well water)
Yes
No
Was the water from the well filtered before drinking and cooking with it? Yes
No
Was the well water used for showering and bathing filtered before use? Yes
No
For how many years did you live on well water?
Chicken
Serving size: 1 large or two small pieces (4 oz) Never
< 1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Turkey
Serving size: 1 large or two small pieces (4 oz) Never
< 1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Beef - 4 ounces or 1 medium patty Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Pork - 4 ounces or 1 medium patty Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Fresh Vegetables - 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Canned Vegetables - 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Frozen Vegetables - 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Fresh Fruit - 1 medium, 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Canned Fruit - 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Frozen Fruit - 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of the time do you buy organic fruits and vegetables?
Cheese - 1 slice, 1/2 oz., 1 Tbsp Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Milk - 1 cup (from cows, do not include non-dairy milks) Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Cream - 1/4 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Ice Cream - 1 scoop, ~ 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Yogurt- 3/4 cup (6 oz) (typical individual container) Never
< 1 per month
1 per month
2-3 per month
1 per week
2-4x per week
5-6x per week
Once daily
2-4x per day
4-6x per day
Butter - 1 tsp Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of the time do you buy organic dairy products?
Beans - 1/2 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Nuts and Seeds - 1/4 cup or 2 Tbsp spread (e.g. peanut butter) Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Fish (non-fried) - 4 ounces Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of the time do you buy farm-raised fish?
Fried foods (fries, chicken, etc) - 4 ounces Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Non-diet soda - 12 ounces, 1 can Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Diet soda - 12 ounces, 1 can Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Spices (cinnamon, cloves, etc) - 1/4 teaspoon Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Oatmeal - 1 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Eggs - 1 egg Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of the time do you buy organic eggs?
Bread - 1 slice Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Pasta - 1 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of your pasta and grains gluten-free?
Fresh Herbs (Thyme, Basil, etc) - 1 tsp Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Wine - 1 med glass, 6 oz Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of the time do you drink white wine (or rosÃ©)?
What percentage of the time do you drink red wine?
What percentage of the time do you drink champagne?
Beer - 12 ounce can or bottle Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
What percentage of the time do you drink lagers?
(e.g. Pilsner (Coors, Miller, Bud), Bock, Dunkel, Oktoberfest)
What percentage of the time do you drink ales?
(e.g. Barley wine, Bitter, Brown, India Pale, Pale, Porter, Stout, Wheat)
What percentage of the time do you drink cask ales? (Unfiltered, unpasturized ales)
Liquor - 1 oz Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Coffee - 8 oz coffee, 1 shot espresso Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Green tea -1 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Black tea - 1 cup Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Olive oil - 1 tsp Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Coconut oil - 1 tsp Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Plant-based oils - 1 tsp.
(Safflower, sunflower, canola oil, etc.) Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Soy - 3 ounces
(tofu, tempeh, etc.) Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Juice - 8 oz., 1 glass Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Eat food from a can Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Drink from plastic bottle Never
<1 per month
1 per month
2-3x month
1 per week
2-4x week
5-6x week
Once daily
2-4x day
4-6x day
Which of the following medications, if any, are you taking? Amantadine (Symmetrel)
Apomorphine (Apokyn)
Benztropine (Cogentin)
Bromocriptine (Parlodel)
Carbidopa, levodopa, and entacapone (Stalevo)
Carbidopa-levodopa (Sinemet)-- Immediate release
Carbidopa-levodopa -- Controlled release
Carbidopa-levodopa -- Extended release
Duodopa
Entacapone (Comtan)
Levodopa-benserazide (Madopar)
Melevodopa (Sirio)
Pramipexole (Mirapex, Mirapex ER, Mirapexin, Sifrol)
Rasagiline (Azilect)
Ropinirole (Adartel, Requip, Requip XL, Ropark)
Rotigotine (Neupro)
Rytary (carbidopa and levodopa)
Selegiline (I-deprenyl, Eldepryl, Zelapar)
Tolcapone (Tasmar)
Trihexyphenidyl (Apo-Trihex, Artane)
Other PD medication
Amantadine (Symmetrel) - Dose
Amantadine (Symmetrel) - Frequency
Apomorphine (Apokyn) - Dose
Apomorphine (Apokyn) - Frequency
Benztropine (Cogentin) - Dose
Benztropine (Cogentin) - Frequency
Bromocriptine (Parlodel) - Dose
Bromocriptine (Parlodel) - Frequency
Carbidopa, levodopa, and entacapone (Stalevo) - Dose
Carbidopa, levodopa, and entacapone (Stalevo) - Frequency
Carbidopa-levodopa (Sinemet)-- Immediate release - Dose
Carbidopa-levodopa (Sinemet)-- Immediate release - Frequency
Carbidopa-levodopa -- Controlled release - Dose
Carbidopa-levodopa -- Controlled release - Frequency
Carbidopa-levodopa -- Extended release - Dose
Carbidopa-levodopa -- Extended release - Frequency
Duodopa - Dose
Duodopa - Frequency
Entacapone (Comtan) - Dose
Entacapone (Comtan) - Frequency
Levodopa-benserazide (Madopar) - Dose
Levodopa-benserazide (Madopar) - Frequency
Melevodopa (Sirio) - Dose
Melevodopa (Sirio) - Frequency
Pramipexole (Mirapex, Mirapex ER, Mirapexin, Sifrol) - Dose
Pramipexole (Mirapex, Mirapex ER, Mirapexin, Sifrol) - Frequency
Rasagiline (Azilect) - Dose
Rasagiline (Azilect) - Frequency
Ropinirole (Adartel, Requip, Requip XL, Ropark) - Dose
Ropinirole (Adartel, Requip, Requip XL, Ropark) - Frequency
Rotigotine (Neupro) - Dose
Rotigotine (Neupro) - Frequency
Rytary (carbidopa and levodopa) - Dose
Rytary (carbidopa and levodopa) - Frequency
Selegiline (I-deprenyl, Eldepryl, Zelapar) - Dose
Selegiline (I-deprenyl, Eldepryl, Zelapar) - Frequency
Tolcapone (Tasmar) - Dose
Tolcapone (Tasmar) - Frequency
Trihexyphenidyl (Apo-Trihex, Artane) - Dose
Trihexyphenidyl (Apo-Trihex, Artane) - Frequency
Other PD Medications - List medications, doses, and frequencies
Supplements, herbs, etc.
(dose, frequency, brand, duration)
examples:
Pharmax finest pure fish oil, 1 Tbsp daily x 4 months
Jarrow Citicoline, 500 mg/ d x 1 year
Centrum multi-vitamin, 2 tabs daily, 10 years
Non-PD Pharmaceutical Prescriptions (not listed above.)
(dose, frequency, duration)
What is your primary source of information
for Complimentary and Alternative Medical
Care?
Books Web / Online Health food / Supplement store Licensed Healthcare Provider Unlicensed Healthcare Provider Other
In the past 6 months, have you consulted any of the following provider types about CAM strategies for PD? ND (naturopathic physician)
MD (medical doctor, conventional physician)
DO (osteopathic physician)
DC (chiropractor)
ARNP (nurse practioner)
LAc (acupuncturist, Traditional Chinese Medicine)
Other
Other CAM
Co- morbidities
List any other diagnosis or illnesses with which you have dealt with over the past 6 months.
(examples: obesity, high blood pressure, hypothyroid, prostate cancer, arthritis, addiction, etc.)
Do you recieve care or attend classes at any of
the following in the past 6 months?
Bastyr Center for Natural Health
Bastyr Clinical Research Center
National College of Naturopathic Medicine
Seattle Integrative Medicine
Powering Forward Boot Camp (BGF/YMCA)
Please list the name of the health care provider(s) you turn to for Parkinson's-related medical advice. This may be your primary care provider, neurologist, movement disorder specialist, etc.
*We will NOT contact this provider on your behalf or share any of your data!
Why are we asking?
If some providers are getting consistently better outcomes than others, we want to know who they are so we can learn from them.
Provider name, provider type, city, and state:
e.g. Jane Smith, ND, Seattle, WA
e.g. Bob Smith, MD, Austin, TX
How did you hear about this study?
Would you like to be contacted if there are any other studies for which you may be eligible? Yes
No
Please tell us anything else you think we should know.
Thank you. You are almost done with this semi-annual survey. At some point over the next 7 days, you will receive an email from us with a link to the ASA24. The ASA24 will ask you to describe all the foods you have eaten in the previous 24 hours. please do your best to eat as you normally do, and complete the survey as soon as you are able once you receive the email. Once you've completed that, you won't hear from us for another 6 months!
Again, your time and efforts are greatly appreciated.
Sincerely,
CAM Care in PD Staff
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