SUPPORTING SOMEONE
Supporting Someone Diagnosed with PSP, CBD or MSA
You may have a family member, friend or co-worker who has been diagnosed with progressive supranuclear palsy( PSP), corticobasal degeneration( CBD) or multiple system atrophy( MSA). It can be hard to know exactly how to support them. You may be feeling unsure about how to relate, be helpful or offer empathy. You are not alone.
Even though each person with a diagnosis of PSP, CBD or MSA copes with it in their own way, it is safe to assume that most people with these neurodegenerative illnesses want and need support through the journey. Many of them fear burdening people they care about, and unfortunately, it is common for people with health conditions to share that they have experienced people in their life who shied away after they told them about their diagnosis. The fact that you are reading this resource is a sign you want to show up for this person in your life, even if you are still figuring out what that could look like or may still be processing your own emotions about their diagnosis.
The intention of this resource is to offer guidance and a starting place for acknowledging, discussing and remaining available to the diagnosed person in your life. When reading these suggestions, consider how you might adapt these ideas to your unique situation and relationship.
Take time to prepare yourself.
• Process and cope with your own feelings before reaching out. Doing so will enable you to feel more comfortable and composed and to keep the focus on the person you care about with PSP, CBD or MSA.
• Think about how you would want to be approached or what you may have felt like in a similar situation.
• Learn the basics of their diagnosis by using reliable websites and resources. Consider asking for disease information from the person’ s partner or a mutual friend. CurePSP offers educational information on PSP, CBD and MSA at www. psp. org / iwanttolearn
Make yourself emotionally available.
• Treat them the same as you did before. If you hugged them or shook hands, continue to do so. They are the same dynamic person they always were, and they do not want to be treated only as a person with an illness. Talk to them as you did before and with respect.
• At the same time, you do not have to pretend that everything is how it always has been and that they are not living with this diagnosis or experiencing new challenges. This behavior can make them feel isolated or as if there is an elephant in the room.
• Ask if they would like to discuss their diagnosis and if they are open to questions from you. Make it clear that saying no is absolutely fine. You can ask if they feel like talking and how much they want to share, but always take your cues from them. Tell them you know you have a lot to learn about their condition and that you are willing to do so.
• Allow for sadness, anxiety or uncomfortable topics or feelings that may arise( from them and from you). It is important to normalize and validate these emotions as part of the experience.
• Also prepare to laugh together, to have fun and to talk about subjects other than the illness. Conversing about mutual interests and non-disease-related topics and finding moments of humor can offer a rest from difficult conversations and feelings, especially as people with PSP, CBD or MSA can sometimes feel their energy and time revolve around their diagnosis and care.
• Tell them you are here for them.