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Are you a patient or a caregiver?*
Agreement*

Parkinson's Community has a 4.8 of 5 Star Rating

Parkinson's Community is only for patients and their loved ones. Have you or your loved one been diagnosed with Parkinson's disease?*
The patient has been diagnosed with:
Are you interested in learning more about clinical trials and treatment options that might be available to the patient based on your answers to this questionnaire?

Parkinsons.Community is exclusively for patients and their loved ones.

We Are Here To Help

How many years ago was the patient diagnosed with Parkinson's disease?*
The following questions will be customized based on the answer provided. Opportunities for newly diagnosed patients are very different to those available for more advanced PD.
We ask the year so that we can more easily find the patient information over time in case an opportunity arises in the future that might be suitable.

Contact Information

Your Name*
If you are submitting this form on behalf of someone else, you must have that person's consent unless you have a medical power of attorney.*
Patient Name*
Address
E-mail is generally not encrypted. If you do not wish to accept the risks associated with communicating your Personal Information by email, please provide only your phone number.
Who is the patient's current neurologist?
What type of primary insurance/coverage do you currently have?
Primary insurance will pay for your bills first and up to your coverage limits. Secondary insurance helps you cover care and services that your primary medical plan may not.
Date of Birth
Did a friend refer you to Parkinson's Community?
Did they send you a direct message through email or Facebook?
Name of Friend Who Referred You? We donate $10 to foundations fighting PD for each referral :)

OFF Time Questions

Is the patient taking levodopa (i.e. Sinemet, Rytary, etc)?*
Levodopa/Carbidopa is Sinemet or Rytary
Can the patient tell when the levodopa/carbidopa wears off?*
Levodopa/Carbidopa is Sinemet or Rytary
Does OFF time interfere with day to day activities or quality of life?*
Off time is when Levodopa / Carbidopa is not working well or has worn off between doses.
Is OFF time a problem for the patient?*
OFF time is when the medications are working poorly where the patient is experiencing any of the following: slowness, freezing, stiffness, tremor, partial immobility.
Does the patient have troublesome off in the morning before the first dose of levodopa (Sinemet) takes effect?*
Oral medications take too long to take effect in the morning and this is bothersome.
During OFF times, would the patient be willing to consider using a pen device to get moving again?*
Would the patient like to consider an investigational treatment with a small subcutaneous pump to deliver investigational medication continuously all day to potentially reduce motor fluctuations? This pump would not require surgery to use and would be similar to an insulin pump used by diabetics?
Is the patient scheduled for Deep Brain Stimulation (DBS) within the next 3 months?*

Important Medication Questions

The medication section is very important because many of our recommendations specific to the patient depend on this information. Please take the time needed to answer these questions accurately.

How many times/day is the patient taking Sinemet or Rytary?*
Is the patient taking or have they previously taken the following medications?
Is the patient taking or have they previously taken the following medications?
  Currently Taking Never Taken Previously Taken and Stopped Unknown
MAO-B Inhibitors (Azilect/ Rasagiline, Selegiline, Xadago/ Safinamide)
Dopamine Agonists (Mirapex/ Pramipexole. Requp/ Ropinirole, Neupro Patch/ Rotigotine)
COMT Inhibitors (Comtan/ Stalevo/ Entacapone) Usually an orange pill.
Amantadine (including GOCOVRI)
Inhaled Levodopa (INBRIJA)
Sublingual Apomorphine (KYNMOBI)
Istradefylline (NOURIANZ)
Is the patient taking or have they previously taken Apokyn?*
Subcutaneous Apomorphine. NOT a morphine product. This is a dopamine agonist.
Does the patient have a Duopa pump?*
Tube surgically placed into the patient's belly.

These questions are to help determine the basic eligibility status of the patient.

By answering these detailed questions we can better determine which opportunities are available to the patient.

Is the patient currently participating in a clinical trial?*
If the patient elects to be in a research study do they have a spouse, caregiver, or friend who lives with them that could help with study participation and could attend some study visits?
Does the patient have a history of frequent nausea or vomiting?
Has the patient had difficulties tolerating any PD medication due to frequent nausea or vomiting in the past one year?*
Has the patient had difficulties tolerating any PD medication due to frequent nausea or vomiting in the past?*
Has the patient been diagnosed with dementia? *
Does the patient have significant trouble with memory or thinking that affects day to day activities such as: difficulty managing finances such as paying bills or balancing a checkbook, tendency to repeat himself/ herself, difficulty remembering appointments, difficulty expressing themselves or coming up with words in conversation, trouble following a recipe, or difficulty putting together or operating household appliances such as a blender or microwave oven?*
Has the patient been diagnosed with mild cognitive impairment?*
Is the patient able to give consent for medical procedures?*
Because of trouble with memory or thinking, does the patient have a medical power of attorney or a legally authorized representative?*
Within the past two years has the patient taken antipsychotic medication? (e.g. Seroquel/ quetiapine, Nuplazid/ pimavanserin, Clozaril/ clozapine, Risperdal/ risperidone, Zyprexa/ olanzapine)?*
Is the medication the patient is taking in the question above Nuplazid/pimavanserin?*
Have you been diagnosed with tardive dyskinesia (TD)?
Does the patient have either of the following psychiatric conditions?*
Parkinson’s disease medications can commonly cause side effects such as hallucinations or abnormal thoughts. We would like to check if you or your loved one is experiences any side effects. Does the patient currently have or in the past had hallucinations (e.g. seeing people, animals, or things are not truly present) or delusions (fixed unusual thoughts such as paranoia)?*
Examples of Delusions: : Scared someone is stealing from them or that their spouse is cheating on them for no logical reason.
Based on your answers you have indicated that the patient likely meets the criteria to speak with a Parkinson's Community Advocate. Would you like to see the available resources?*
Based on your answers you have indicated that the patient meets the criteria for Extended Release Therapy. Would you like to speak with a Parkinson's Community Advocate about available resources?*

You are doing great.

Keep up the good work

Has the patient had brain surgery?
Does the patient have COPD, Asthma, or use an inhaler for lung disease?
Has the patient ever had a stroke?
Has the patient ever had any type of cancer, even skin cancer?
Did this cancer occur in the past 5 years?
Does the patient have kidney dialysis or has their doctor diagnosed them with any acute or chronic renal insufficiency or failure?
Does the patient have a history of recent significant cardiac problems: heart attack within the last year, bypass surgery in the last year, pacemaker placement in the past year?
Does the patient have liver insufficiency or been diagnosed with liver disease?

This is the last set of general questions.

Please answer anything you feel comfortable with. If you would like to skip an answer that is ok.

Do you have any trouble with constipation or are unsatisfied with the treatment you are receiving?
Is the patient a pregnant female or currently breastfeeding?
Is the patient currently using any cannabis products (Medical or Recreational) by smoking, vaping, edibles, or topicals to skin?
Has the patient been diagnosed with addiction or treated for use of any addictive drug (e,g, opioids/ narcotics. methamphetamine, cocaine, etc,)?
Has the patient been diagnosed with or treated for excessive alcohol use (alcoholism) in the last 2 years?
Have you ever been diagnosed with impulse control disorder associated with use of PD medication (especially dopamine agonists such as Mirapex/ pramipexole, Requip/ ropinirole, or Neupro patch/ rotigotine patch)?
Do you or have you ever felt driven to do or think about something and find it hard to stop such as gambling, shopping, using the computer, taking extra medicine, obsessing about food or sex?
Does the patient have bothersome drooling (examples include embarrassment or wetting clothing or face)?
| Botulinum Toxin includes: (Myobloc, Botox, Xeomin, Dystort)
Has the patient been diagnosed as having orthostatic hypotension (excessive blood pressure drop when you stand up from lying or sitting)?
Does the patient have symptoms of lightheadedness or feeling like they might faint frequently when standing up from a chair or lying?
Would the patient like to consider an investigational medication for treatment symptoms of lightheadedness or orthostatic hypotension?
There is currently no cure for PD but you can play a role in preventing it. There are some enviromental factors that may cause PD and you may be able to support this research. Would you like to see if you qualify to take action?

Environmental Exposure

Did the patient live, work, or visit Camp Lejeune, a Marine Corps Base in North Carolina, before 1986?
Were you or loved one exposed to the herbicide Paraquat®? (Gramoxone®, Firestorm®, Helmquat®, or Parazone®)
Were you or loved one exposed to any of the following:
Was your exposure due to commercial application?
How did the exposure occur?
How long was Paraquat® used?*
What year did the exposure first occur?
Were you or loved one diagnosed with Parkinson's disease after being exposed to Paraquat®?
Would the patient be interested in participating in a study of an investigational treatment for motor fluctuations?
"OFF Time" or "Dyskinesia"

Questions specific to Parkinson's patients that experience constipation

Does the patient have 3 or fewer complete bowel movements per week without use of laxatives?*
Incomplete bowel movements in which the patient feels that they do not completely empty are not considered
Does the patient have constipation which has been present for over 6 months?*
Has the patient tried laxatives for a period of at least 6 weeks (at present or in the past), taking at least one per week during that time?*
Is the patient satisfied with their response to laxatives?*
Has the patient been diagnosed with irritable bowel syndrome (IBS)?*
Does the patient have any diagnosis of other GI problems such as structural, metabolic, or functional GI diseases or disorders (e.e. diverticulitis, peptic ulcer disease, malabsorption, celiac disease, pancreatitis, ulcerative colitis, Crohn’s disease, gastroesophageal reflux disease, hepatitis, liver cirrhosis)*
Does the patient have history of major GI surgery within the past 30 days?*
Does the patient currently take opiates (e.g. hydrocodone/ Vicodin/ Norco, oxycodone/ Percocet, morphine, hydromorphone/ Dilaudid, tramadol/Ultram)?*
Does the patient currently take Clonazepam?*
Is the patient placed under legal guardianship?*

Questions specific to Parkinson's patients that experience troublesome motor fluctuations.

Does the patient have dyskinesia (excess involuntary movements that are squirming or rocking, writhing, that occur when your medication is working or at too high a level)?
Does the patient have dyskinesia which is troublesome and may cause significant embarrassment of interfere with activities such as feeding, dressing, walking, writing, computer or phone use?
Because of dyskinesia does the patient experience any of the following?
Is the patient interested in participating in a study of an investigational treatment for dyskinesia?
What best describes the patient's dyskinesia (excess involuntary movements that are squirming or rocking, writhing, that occur when your medication is working or at too high a level)?*
Would you like to see if the patient qualifies for clinical trials for people newly diagnosed with Parkinson's disease?

Questions specific to newly diagnosed Parkinson's disease patients.

Is the patient on levodopa or dopamine agonists or anticholinergics or amantadine more than 60 days or have previously taken these medications for more than 60 days in the past?
If the patient is on levodopa or dopamine agonists or anticholinergics or amantadine currently, but less than 60 days would they be willing to come off them in order to participate in a trial?
Does the patient feel as if the symptoms are becoming bothersome, and now needs medication to treat the symptoms as opposed to just slowing the progression?
Has the patient had any problem with depression or are they on any anti-depressants?
Is the patient between 99 – 242 lbs?
Has the patient been diagnosed with sleep apnea?
Is the patient currently or have they been treated with any of the following medications for orthostatic hypotension?
Is the patient currently or have they been treated with any of the following medications for orthostatic hypotension?
  Yes No Yes but no longer taking Never
Midodine/ Proamatine
Florinef/ fludrocortisone
Northera/ droxidopa
Mestinon/ pyridostigmine
Strattera/ atomoxetine
Which best describes the patient's treatment for sleep apnea?*
Is the patient currently or have they been treated with any of the following non-drug therapies for orthostatic hypotension?
Is the patient currently or have they been treated with any of the following non-drug therapies for orthostatic hypotension?
  Yes No Yes but no longer taking Never
Extra fluid intake
Extra salt intake
Elevation of head of bed
Compression stockings
Extra caffeine intake
Has the patient fainted (lost consciousness and fell down) as a result of feeling lightheaded when standing up from a chair or lying down since diagnosed with Parkinson’s disease and these problems began?

Progressive Supranuclear Palsy

When did you first notice PSP symptoms?
Can the patient walk 5 steps independently or with a little help (using a cane, walker, or holding onto someone with one hand)?
Does the patient live in a nursing home?

Thanks! Now it's time for us, to work for you.

What are your preferred times for a phone discussion with a Parkinson's Community Advocate?
What are your preferred times for a phone discussion with a Parkinson's Community Advocate?
  Early Morning Morning Afternoon Evening Night
Monday
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