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There will be a moment when those three letters hit you: PSP.
It may happen in your neurologist’s office, or it may come later, sitting in the car park, or after you have gone home and searched the internet. However it happens, there comes a moment when the reality sinks in. It happened to us 18 months ago.
I have PSP.
The next few hours may be among the most frightening of your life. Your mind will race ahead to questions that nobody can answer. Try not to live the next five years in the next five minutes.
Your doctor may describe it as “possible”, “probable” or “likely”. That uncertainty can be frustrating, but neurological diagnoses are rarely absolute. In my experience, by the time an experienced movement disorder specialist tells you they believe you have PSP, they have thought long and hard before reaching that conclusion. Doctors do not make this diagnosis lightly.
So, what do you do next?
1. Take a deep breath
I know that sounds almost insulting at a time like this.
Your life, and the lives of those closest to you, have changed forever. You have probably read that there is currently no cure or disease-modifying treatment. (I hope this guide becomes outdated). If you have already searched online, you have almost certainly seen references to a shortened life expectancy. No one said this would be easy. Your mind is racing and your emotions are all over the place.
Take a deep breath.
Then take another.
Panic rarely improves decision-making.
You do not have to make every decision today. There are people who can help, there are support networks, and there are practical steps you can take. However, frightening this diagnosis feels, try to stay calm long enough to begin making good decisions.
2. Think carefully before spending all your energy fighting the diagnosis
Many people encouraged me to seek multiple opinions and enrol in every clinical trial I could find. That is a completely understandable reaction, and for some people it may be the right path.
For me, it wasn’t the right path.
I had already been misdiagnosed for years, which meant I was well into the disease by the time I received the correct diagnosis. I decided that my most precious resource was not money but time. I wanted to spend that time with my family, reduce unnecessary stress and find a sense of purpose.
Only you can make that decision. But remember that an experienced neurologist usually reaches a PSP diagnosis only after considerable thought and investigation. It is not a diagnosis that is handed out casually.
I am not a medical professional so be guided based on your specific circumstances.
3. Start making the important decisions
The number of decisions can feel overwhelming, which is why I eventually created a PSP Decision Map to help organise them. You can find it here:
https://benlazpsp.com/the-psp-decision-map/
There are also excellent organisations, including CurePSP, PSP Awareness and HealthUnlocked, that can help guide you through the journey.
Some of the first decisions to think about include:
Decide who to tell
You cannot hide PSP forever. For most people, the symptoms will gradually become visible, so think carefully about who you want to tell, when and how. Many people find it easier to communicate openly rather than allowing rumours or assumptions to fill the gaps.
Remember that this news will land just as heavily on the people who love you. Choose your moment carefully and deliver it in a way that offers as much calm and reassurance as possible.
Sort out the practicalities
I stopped working immediately, took sick leave and later retired on the advice of my neurologist. I also began organising my finances, applying for benefits and putting legal arrangements in place, including end-of-life documentation.
That sounds overwhelming, but it does not all have to happen at once. Most countries have established processes to help you through each step.
The one that is often the toughest is Driving – this caused me endless sleepless nights before I voluntarily gave up because I was too big a risk to people including my kids.
Focus on quality of life
This is incredibly important.
Make time for the people and activities that matter most. Go for walks while you still can, whether independently, with a walking stick, a walker or eventually a wheelchair.
Create memories.
One of my favourite memories since my diagnosis was travelling to Japan to spend time with my son.
Don’t underestimate comfort. A good chair may sound like a small thing now, but one day it may become one of the best purchases you ever make.
Get ahead of the big elephants so that they are in place before you need to worry about them – whether installing bathroom bars, renovating or putting in a chair lift.
Exercise your body and your mind
Start physiotherapy early and keep stretching. Both research and the experience of the PSP community point in the same direction: start early and keep going safely for as long as you can.
Just as importantly, exercise your mind. Find a hobby that gives your thoughts somewhere positive to go. Mine was chess.
Keep your sense of humour
This may sound like strange advice, but humour has become one of my greatest survival tools.
PSP is a cruel disease, but it is also an absurd one. There will be moments that are genuinely funny. You may find yourself wearing sunglasses indoors, arguing with a lift that seems determined to close its doors before you’ve reached it, spilling your drink for the third time that day or laughing because, frankly, the alternative is crying.
If you can still laugh, do.
Laugh with your family.
Laugh with your friends.
Laugh at the disease.
Laugh at yourself.
Humour does not mean you are ignoring the seriousness of PSP. That is impossible. It means PSP has not taken away another part of who you are.
Never let the disease have the last laugh.
Find a purpose
One of the biggest challenges after a diagnosis is feeling that your world has suddenly become much smaller.
You may have to stop working. You may lose hobbies you once loved. Your independence may gradually reduce. It is easy to conclude that your purpose has disappeared as well.
It hasn’t.
Purpose simply changes.
Mine became writing, raising awareness of PSP and playing chess. Yours might be spending more time with your grandchildren, volunteering, mentoring someone, learning a new skill, painting, reading, studying, praying or simply being more present for the people you love.
You do not have to change the world. Sometimes getting out of bed with a reason to face the day is enough.
PSP may change what you are able to do, but it does not determine whether your life still has meaning. That decision remains yours.
Build your support team
You cannot do this alone.
Think about who will walk this journey with you. Your partner, children, wider family, friends, physiotherapists, occupational therapists and medical team all become part of your support network.
One lesson I had to learn was that accepting help is not surrender. It allows other people to show their love.
Connect with others who understand
Join support communities such as CurePSP, PSP Awareness, PSP Warwickshire and HealthUnlocked.
The practical advice you receive from people living with PSP can be every bit as valuable as the medical information.
Accept that PSP is unpredictable
One night you may sleep well; the next you may barely sleep at all.
Some symptoms appear suddenly and then settle for a while. Others progress gradually.
Almost everyone I have spoken to describes PSP as moving in fits and starts rather than in a straight line. Learning to live with that uncertainty is one of the hardest parts of the journey.
4. If you are the partner
If you are reading this because someone you love has just been diagnosed, please hear this clearly: this diagnosis has happened to both of you.
You will become a carer, advocate, organiser, driver and, on many days, the person who quietly keeps everything together.
Your partner is grieving too, even while trying to stay strong for you.
Your partner will also sadly change behaviour – it is part of the disease so be forewarned. This guide I wrote my help… https://benlazpsp.com/2025/11/26/caregivers-booklet/
You will need support just as much as the person with PSP does, and you are far less likely to ask for it. Build your own network. Take the breaks. Accept the help. Looking after yourself is not selfish. It is part of looking after the person you love.
5. Perhaps the most important decision of all: your attitude
Viktor Frankl survived three concentration camps and lost almost his entire family during the Holocaust. In his remarkable book Man’s Search for Meaning, he wrote that everything can be taken from a person except one thing: “to choose one’s attitude in any given set of circumstances.”
Those words have stayed with me ever since my diagnosis.
You cannot choose whether you have PSP.
You cannot choose how quickly it progresses.
But you can choose how you respond.
Your attitude will never change the diagnosis, but it can profoundly influence how you and your family live with it.
No one wants this diagnosis, and no one expects you to be positive every day. There will be days of fear, anger, sadness and frustration.
But whenever you can find hope, humour, gratitude or purpose, you will be helping not only yourself but also the people who love you.
I do not have all the answers, and I certainly do not have a cure. Be sceptical of anyone who claims they do.
But I can say this with confidence: although PSP changes your life beyond recognition, it does not end your life. There is still love to give, memories to create, laughter to share, purpose to discover and moments of extraordinary joy to experience.
That is enough.
One step at a time.
One decision at a time.
One day at a time.
As I said this is just my opinion 18 months in but it may be valuable for someone and I am happy to make changes/additions.
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