[Webinar Recording] YOPD Council: Communicating About Parkinson’s

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Communicating effectively about your Parkinson’s is an essential part of receiving proper care, building strong relationships, and more. Join our YOPD Council for a discussion on their learned experience of communicating effectively about their Parkinson’s.

Watch the video and read the show notes below.

*Important Note: Beginning next month, in July 2022, the YOPD Council is changing names from YOPD Council to “Living with Parkinson’s: Everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.” We are excited about this change and hope it will allow us to reach more people, not just those with YOPD. 

The YOPD Council: communicating about parkinson’s

To download the audio, click here.

To download the transcript, click here.

Show Notes

  • One of the challenges people with Parkinson’s face is how to explain Parkinson’s to others? It is not an easily understood diagnosis and is even more difficult to explain. One analogy that can be used is by comparing Parkinson’s to a modern car: In an old car, if one part breaks, that is fine, you can fix it. However, in a modern car, if the computer system breaks, there is no telling what will happen to the rest of the parts. The car could suddenly start going in reverse, even without being told to. The horn could stop working or be a lot softer. In a modern car, even when you know exactly what the problem is, it is impossible to fix it because the main issue is the computer system, which would need to be entirely replaced. That computer system is Parkinson’s affecting the brain and the body. 
  • One of the best ways we can advocate for ourselves at the doctor and with friends and families is by making sure we have and can communicate relevant information. Our panelists suggested writing down major symptoms and making sure your doctor inputs them into your chart. Another suggestion is to take an advocate with you to appointments, whether it is a long-term care partner, a lawyer, or even a friend. This way, if your symptoms prevent you from explaining your concerns, someone else can provide additional insight. We shared a link to many of the checklists and worksheets we have that help people better prepare for working with their healthcare providers. You can find them here. 
  • An issue many people face when explaining their Parkinson’s is language usage. Make sure you use consistent terminology so others around you can be trained to understand what you are going through. You may choose to refer to Parkinson’s as a “condition” or “chronic illness” rather than a “disease.” You may explain that you are seeking “management” options, not “treatment” or a “cure.” You can find other resources on language usage here. 
  • Getting access to disability services can be frustrating. Many insurance companies have check-ins where they ask if you are “better,” even though Parkinson’s is a chronic and degenerative condition. Others will ask for “proof of illness” even though it has been given many times. Use lawyers if you can. Find advocates who will help you cut through red tape, read forms, or just talk you through the process. We have resources for how to get access to disability services here.  
  • Give yourself grace when it comes to being open about Parkinson’s. Some people “come out” with their Parkinson’s within a few months of diagnosis while others wait years. The most important thing to understand is that coming out will help you find better doctors, more resources, and, most importantly, freedom. Parkinson’s can sometimes make us feel small, but we cannot let it.  
  • If you do not have access to other doctors or the ability to interview and try out several, keep the following ideas in mind: 
    • Use your doctor’s patient portal whenever you have a new symptom or question. When you use the patient portal to communicate, you are making it part of your medical record, and that can help down the road when you need to remind your doctor, make a case for better care, or need to share notes with insurance providers. 
    • Return to questions your doctor brushes over and make sure they have an answer.  
    • Do not let doctors dismiss your symptoms or feelings. If your Deep Brain Stimulation (DBS) device is not working, you do not need therapy, you need your neurologist to fix it. Make sure you make them listen. 
    • Fill out our worksheets and bring them to your appointments. Make sure they go into your chart so that all the information is available. 

Missed this webinar? join us next time!

The YOPD Council meets on the third Thursday of every month, and every session is recorded and shared for all to access. Register for the YOPD Council series here, after which you will be invited to join live and notified when a new webinar recording is posted. Are you interested in catching up on past YOPD Council webinar recordings? You can find all recordings on various subjects on our YOPD Council Youtube playlist, and don’t forget to subscribe to our channel to be notified when new Youtube content becomes available.

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