I Am a Child or Teen Wanting to Learn More

You probably just learned that an adult in your life has a disease called PSP, CBD or MSA. It could be your parent, grandparent or another adult in your life. This page is meant to help you understand what the disease is, what will happen and how you can help.

PSP, CBD and MSA are brain diseases. While scientists don’t know what causes these diseases, they do know that they affect brain cells. Brain cells control the way we move, talk, eat and behave. These diseases are not contagious, and you will not “catch it” by spending time with people who have them.

There is not currently a cure for these diseases, but scientists are working hard to find one.

PSP, CBD and MSA are three different diagnoses and the adult in your life will only have one of them.

There is a lot of overlap between the three, but each disease has its own unique set of symptoms. It is also important to remember that no person with these diseases gets all the symptoms you will read about below.


Click on the disease that the adult in your live has to learn more about it:

PSP can make it harder for someone to:

  • Move their eyes to look around
  • Open and close their eyelids
  • Walk and keep their balance
  • Speak clearly
  • Swallow food, drinks, and saliva
  • Show emotions the way they used to—they might seem sad, worried or less interested in things they once enjoyed.

Ways you can help:

  • Ask if they’d like help walking or moving.
  • Be patient if it takes them longer to move, talk or eat.
  • If they fall, it’s okay if they feel upset or scared.
  • Get an adult to help.
  • Keep doing what makes you happy!
  • You can’t change how they’re feeling but seeing you happy can brighten their day.
  • Talk to them, even if they can’t talk back the way they used to.
  • Try different ways to communicate, like pointing, using a letter board or a speech app on their phone.

CBD usually starts on just one side of the body, and you will notice that side is a bit weaker and stiffer than the other side.

CBD can make it harder for someone to:

  • Walk and keep their balance
  • Complete tasks with their hands
  • Speak clearly
  • Swallow food, drinks, and saliva
  • Think and plan

Ways you can help:

  • Ask if they’d like help walking or moving.
  • Be patient if it takes them longer to move, talk or eat.
  • If they fall, it’s okay if they feel upset or scared.
  • Get an adult to help.
  • Keep doing what makes you happy!
  • You can’t change how they’re feeling but seeing you happy can brighten their day.
  • Talk to them, even if they can’t talk back the way they used to.
  • Try different ways to communicate, like pointing, using a letter board or a speech app on their phone.

MSA affects many parts of the body, making it hard for people to control their movements and important bodily functions.

MSA can make it harder for someone to:

  • Walk and keep their balance
  • Complete tasks with their hands
  • Speak clearly
  • Swallow food, drinks, and saliva
  • Use the bathroom

Ways you can help:

  • Ask if they’d like help walking or moving.
  • Be patient if it takes them longer to move, talk or eat.
  • If they fall, it’s okay if they feel upset or scared.
  • Get an adult to help.
  • Keep doing what makes you happy!
  • You can’t change how they’re feeling but seeing you happy can brighten their day.
  • Talk to them, even if they can’t talk back the way they used to.
  • Try different ways to communicate, like pointing, using a letter board or a speech app on their phone.


Now that you know more about the disease, let’s answer some common questions. Click on each question below to see the answer.

Your loved one has a sickness that changes over time. These changes, called symptoms, mean they will have a harder time doing the things they used to do. Every person with this sickness will experience it differently.

It can be scary to hear that your loved one has a disease that changes the way their body works. However, there are ways to work around these changes. 


Some people might have trouble moving their arms, hands, feet or legs. This can make it hard to walk and can cause people to fall. Some tips:  

  • When your loved one is struggling to walk, ask them if they would like help. 
  • If someone falls, it’s okay if they’re angry or scared. Get an adult to help them get back up or to see if they are hurt.    

Some people might have some sad or worried feelings called anxiety, depression and apathy. Some tips:  

  • If they are sad or anxious, it can help them if you continue living a joyful life. Understand that there may not be a lot you can do to change how they are feeling.    
  • If they are feeling like they don’t want to do anything, try to be patient. Ask them or another adult what can be helpful. 
  • You are not the reason they are sad or anxious! You can ask them if they would like you to sit with them while they feel this way. 

Some people with these diseases might have a hard time thinking clearly or saying what they are thinking.   Some tips:  

  • It can be hard waiting for them to speak when they used to speak clearly before the disease. Try to give them time and be patient.    
  • Talk to them just like you normally would. They will still want to hear about your life and all of the things you have going on.
  • There are other ways to communicate with someone, like using a board with words and letters, pointing to what they are talking about or using an app on their phone that speaks for them.    

   

“My grandmother and I used to talk for hours at a time. As time passed, it got harder and harder for her to talk with me. Instead, I talked, and she listened. I always encouraged her to keep using her voice, and she did. It took her time to get every word out, but I stayed and listened to everyone. After a while, she stopped talking. She would smile and frown, sometimes grunt, but always laugh like no one else could. It was hard not being able to communicate and hear her beautiful voice. But we adapted. She told me stuff in her own way, and I wouldn’t have wanted anything else.” - Sanjay Geevarghese   


Considerations for Young Adults

There is a lot of information and support available for adult children of people with PSP, CBD or MSA, but much less for those who are in the life stage between children and adults. If you are a young adult, it may feel like you’re in-between two distinct categories of caring – you are emotionally and physically capable of providing more care than children and teens may be, but you aren’t yet a main care partner.

Visit CurePSP’s Resources for Young Adults webpage to learn more about the resources available to you.

“My grandmother and I used to talk for hours at a time. As time passed, it got harder and harder for her to talk with me. Instead, I talked, and she listened. I always encouraged her to keep using her voice, and she did. It took her time to get every word out, but I stayed and listened to every one. After a while, she stopped talking. She would smile and frown, sometimes grunt, but always laugh like no one else could. It was hard not being able to communicate and hear her beautiful voice. But we adapted. She told me stuff in her own way, and I wouldn’t have wanted anything else.” - Sanjay Geevarghese