Living with a rare neurodegenerative condition like Progressive Supranuclear Palsy or Corticobasal Degeneration, or caring for someone who is, can be isolating.
For many of you, talking about how you are feeling can be difficult. It can be hard to know where to begin, what to say, or whether what you are feeling is something worth sharing. When so much of daily life can feel uncertain, putting emotions into words can feel like another challenge.
But talking is important.
Even if there is nothing you need help with, and you just want to chat or build a connection with someone who understands what you are going through, we are here for you.
It can help you feel less lonely and ease some of the weight you may be carrying. Talking to someone who understands the condition can also help you make sense of what you are going through, no matter how your journey is progressing. Even when a situation cannot be changed straight away, being listened to and knowing that support is available can make it feel more manageable.
At PSPA, our Helpline is here for everyone who wants to talk. Especially during our upcoming Time to Talk week from 11 to 15 May, we will be here and ready to support anyone affected by PSP & CBD.
There’s no “Right time” to talk
You do not need to wait until things feel overwhelming to talk. Support is not only there for moments of crisis. It is there for the everyday worries too. You can talk to us about your quieter concerns, the difficult days and the moments when things simply feel harder than usual.
Whether you are living with a diagnosis, caring for someone, supporting a loved one or simply trying to make sense of what comes next, you do not have to face it alone. Our Helpline care navigators are here to listen, without judgment, and at your pace.
You do not need to have the right words
Reaching out for support can feel like a big step, especially if you are not sure how to begin. You do not need the right words or a clear plan. And you do not need to explain everything perfectly.
Simply starting the conversation is enough.
It is okay to begin with:
“I am not sure how to explain this.”
“I don’t know where to start.”
“I’ve been finding things difficult lately.”
Start where you feel most comfortable
If you are thinking about reaching out, there are a few things you can do to feel as calm and comfortable as possible.
Try to find a quiet space and a time that feels private. Give yourself permission to go slowly and take a few steady breaths before you call or write what you are feeling.
Writing down a few thoughts on what has been difficult, or what is on your mind, before you get in touch can help you feel more organised and can make taking that first step feel a little easier.
You do not need to say everything at once. Just start with whatever feels easy and comfortable.
If speaking feels difficult, writing is okay too
There is no right or wrong way to reach out. What matters is finding the way that feels right for you.
For some people, speaking on the phone can feel difficult, especially when emotions feel close to the surface or simply because their speech is not what it used to be.
If talking feels like too much, you can put down your thoughts in an email.
Writing can give you time to gather your thoughts and say things in your own way. It can help you make that first contact without feeling overwhelmed.
Go at your own pace
When you decide to reach out to talk to us, you may feel compelled to share everything all at once. But you do not have to.
It is okay to pause, take your time, and gather your thoughts when you talk.
You only need to share what feels right for you in that moment. If something feels too difficult to talk about, you do not need to share it just yet. There is always a next time, or you can choose to keep it to yourself.
It is entirely up to you.
You are also free to take a break if you feel overwhelmed during a call or end the conversation at any time. Our Helpline will be here to welcome you back when you feel ready.
Talking and knowing that support is available
We understand that talking does not always change the situation or provide a solution straight away. But it can make you feel less isolated knowing there is support available.
For people affected by PSP & CBD, having a safe space to talk openly can make a real difference.
- It can help you feel heard.
- It can help you feel understood.
- It can help you feel less alone in what you are facing.
- It can remind you that support is available at every stage of your journey, no matter what you are going through.
Sometimes, knowing someone is there to listen can make all the difference.
Time to Talk Week Agenda
To help you get started and motivate you to call, here are the topics for each day of the Time to Talk week. Please be assured, these are just for guidance, and you can reach out to us any time to talk about whatever is on your mind.
11 May, Monday – Staying positive when things look bleak.
12 May, Tuesday – Self-care.
13 May, Wednesday – When the burden gets heavy.
14 May, Thursday – Living with CBD.
15 May, Friday – It’s good to talk.
PSPA is here when you are ready
Whether you need important information regarding the conditions and ways to access the right support, reassurance, encouragement or simply someone to talk to, we are here for you.
PSPA’s Helpline offers free, confidential support by phone and email for people affected by PSP & CBD across the UK. Our trained Helpline care navigators can provide a listening ear, practical information and support to help you understand what is happening and navigate the challenges ahead.
You do not need to face Progressive Supranuclear Palsy and Corticobasal Degeneration alone.
Give our Helpline a call on 03000110122 or email us at helpline@pspassociation.org.uk during Time to Talk week or whenever you feel ready, and we will make sure you get the support and care you deserve.
