Newly diagnosed?
If you have recently been diagnosed with PSP or CBD, it is likely you are experiencing a range of very strong emotions. You may feel completely overwhelmed and have feelings of anger, denial, fear and sadness.
PSP & CBD are rare neurodegenerative conditions which can affect people in very individual ways and pose significant difficulties.
Learn more about PSP & CBD; the symptoms, how they may impact daily life and what support is available below.
Understanding your diagnosis
One of the first steps in coming to terms with a diagnosis can involve talking to others about how you feel. Family and friends can help share your thoughts and concerns as well as support you.
The PSPA Helpline is also available to help you understand what is happening, as well as provide vital information and sign posting, where needed. The Helpline is open five days a week, Monday to Friday, 9am to 9pm.
Our monthly Newly Diagnosed Group meetings might also aid your understanding of the conditions. Across six months, you will have the opportunity to meet with other newly diagnosed people as well as healthcare professionals who come along to answer any questions you might have.
Additional support for you
If understanding your diagnosis is a challenging experience, we have a range of support and information that can help.
Keep reading to learn more about our Link Volunteer Service, our useful publications and other people’s experiences of PSP & CBD below.
Link Volunteer Service
Get short-term, one-to-one support to help you understand your diagnosis with our Link Volunteer Service.
Across twelve in-person visits or phone calls you can share your thoughts and feelings, and be signposted onto information and services.
Useful publications
We publish a number of information sheets and guides to support you as you come to terms with a new diagnosis and plan ahead.
From our Personal Guide, to information sheets to help you navigate changes and a quarterly magazine, we have your questions covered.
Personal experience
As your understanding of PSP & CBD grows, it can be reassuring to read about other peoples’ experiences of the conditions.
To help you feel less isolated, we’ve collected experiences of other individuals and families, who share details of their journey.
CONTACT US
If you would like to speak to someone about your diagnosis and the support available to you, please get in touch using the details below.
Alternatively, complete our Join Us form and a member of our team will give you a call.
Telephone: 0300 0110 122
