About half of people living with Parkinson's will, at some point over the course of the disease, see or hear something that isn't there, sense a presence in the room, or come to believe something that others don't believe is true. It is one of the most common parts of Parkinson's.
It is also one of the least discussed. Up to 90% of people never bring these experiences up with their doctor. Not because they don't matter, but because they are hard to say out loud, and because they often don't feel like symptoms at all.
That's why we've added the Parkinson's Symptom Screener to StrivePD. It's four questions you answer yourself, at home, in about a minute.
Its full name is the Self-Administered Screening Questionnaire for Parkinson's Disease–Associated Psychosis, or SASPAP. It was developed by a committee of two neurologists, a psychiatrist, a person living with Parkinson's, and a patient advocate, tested with patients through several rounds of revision, and published in the medical journal Movement Disorders in 2023.
It is not a diagnosis, and it isn't a test you can fail.
Why it can help
These experiences tend to become more noticeable over time, and they are treatable. Naming them early gives you and your care team more options and more time to work with.
We chose this screener because it holds up. In the study that validated it, 250 people with Parkinson's completed the four questions, and their answers were compared against a full interview with a movement disorder specialist. The screener agreed closely with what the specialists found.
Care partners are welcome to complete it too, either alongside you or on your behalf. Each of you tends to notice things the other doesn't, so both perspectives are useful.
What it asks
Four questions about the past month: things you may have seen, heard, or sensed, and beliefs that others around you didn't share.
There are no right or wrong answers, and your responses are confidential.
What happens next
Your results come to your email. They're yours to keep and to bring to your next appointment.
If your responses flag something, you'll see a note explaining that many people living with Parkinson's experience the same thing, that these symptoms are often manageable, and that they can sometimes be related to medications or to another treatable condition. Please don't stop or change any medication on your own. Talk to your provider first, and contact them right away if symptoms come on suddenly or get worse.
If nothing is flagged, the results are still worth keeping as a baseline. Things change, and you're welcome to take the screener again later.
A few things the screener doesn't do. It doesn't diagnose anything. It doesn't send anything to your doctor automatically, and it doesn't change your care plan. Your care team knows your full history and is the right place to make sense of your results.
It's also worth knowing that a screener can point at something that isn't there. In the validation study, a small number of positive results came from misreading a question, or from experiences that had already passed. That's normal for a tool like this, and it's another reason to review your results with your provider rather than draw conclusions from them alone.
If you'd like to talk it through
You don't have to work through this on your own.
Rune Labs has partnered with Acadia Pharmaceuticals, a company that has spent years focused specifically on the non-motor side of Parkinson's, to give StrivePD users access to their patient educators. These are specialists in hallucinations and delusions. They can answer your questions, explain what your results mean in plain terms, and help you prepare for your next appointment.
It's free, there's no obligation, and it's entirely your choice. We don't share anything with Acadia unless you ask us to, and you can withdraw at any time.
You may also find these helpful:
- More to Parkinson's: talking about some common symptoms
- Parkinson's Foundation: hallucinations and delusions
Questions about the screener or anything else in StrivePD? Reach us any time at support@strive.group.
Common questions
Are my responses confidential? Yes. Your responses are handled like the rest of your health information in StrivePD, and a copy of your results is sent to you.
Can my care partner fill it out? Yes. A care partner can complete the screener on your behalf, or you can each complete one and compare.
Can I take it again? Yes. Symptoms change over time, so retaking it periodically can be a helpful way to keep track.
Comments
0 comments
Article is closed for comments.