National Pain Consultation for Young Onset Parkinson's

Background:

During national consultations undertaken for the Young Onset Parkinson’s Exchange (YOP-X), pain experiences were highlighted as key areas to consider for further investigation. Studies show that pain is undiagnosed and poorly managed in people with Parkinson’s, and no studies in Australia or internationally have specifically looked at pain experiences for people with Parkinson’s under 65. The National Pain Consultation for Young Onset Parkinson’s will gather a key set of information focusing on the types of pain, severity, frequency, location of pain, aggravating and easing factors and impact on quality of life for people with young onset Parkinson’s, to develop appropriate assessment, scoring and treatment strategies.

Your Age*

Your Gender*

Your Relationship Status*

How old were you when you were diagnosed with Parkinson’s?*

Do you remember feeling any pain before you were diagnosed with Parkinson’s? If yes, can you describe where the pain was located in your body and what the pain felt like?*

Is pain currently impacting on your day-to-day functioning? Please describe.*

Have you noticed a difference in pain during your “on” or “off” times? Please describe.*

Morning Pain

Do you feel pain in the morning? If yes can you describe where the pain is located in your body and what the pain feels like?*

Could you rate how bad the pain is that you experience in the morning between 1 – 10 if 1 is not severe and 10 is the most severe?*

Is the pain you experience in the morning improving, staying the same or getting worse?*

Pain during the day

Do you experience pain in the middle of the day? If yes, can you describe where the pain is located in your body and what the pain feels like?*

Could you rate how bad the pain is that you experience in the middle of the day between 1 – 10 if 1 is not severe and 10 is the most severe?*

Is the pain you experience in the middle of the day improving, staying the same or getting worse?*

Afternoon Pain

Do you experience pain in the afternoon? If yes, can you describe where the pain is located in your body and what the pain feels like?*

On a scale of 1-10, could you rate how bad the pain is that you experience in the afternoon if 1 is not severe and 10 is the most severe?*

Is the pain you experience in the afternoon improving, staying the same or getting worse?*

Evening Pain

Do you experience pain in the evening before you sleep? If yes, can you describe where the pain is located in your body and what the pain feels like?*

On a scale of 1-10, could you rate how bad the pain is that you experience in the evening before you sleep if 1 is not severe and 10 is the most severe?*

Is the pain you experience in the evening before you sleep improving, staying the same or getting worse?*

Pain during the night

Do you experience pain during the night? If yes, can you describe where the pain is located in your body and what the pain feels like?*

On a scale of 1-10, could you rate how bad the pain is that you experience during the night if 1 is not severe and 10 is the most severe?*

Is the pain you experience during the night improving, staying the same or getting worse?*

Your pain specifics

Are you left or right handed?*

Do you experience pain more on the left or right side or both sides?*

Do you experience Parkinson’s symptoms (for example tremors, dystonia, stiffness) on your left or right side or both?*

Have you found anything that helps or reduces your pain?*

Is there anything that triggers your pain or makes your pain worse?*

Have you had discussions about your pain with your Neurologist, and if yes, were they helpful?*

Have you had any discussions about your pain with your GP, and if yes, were they helpful?*

Have you felt, or are you currently experiencing feelings of depression?*

(If you would like some additional support and would like to chat to a trained professional in your state or territory, please contact Parkinson’s Australia on 1800 644 189)

Is there anything else you would like to add?*

National Pain Consultation for Young Onset Parkinson's Background:

National Pain Consultation for Young Onset Parkinson's

Background: