My dad Tommy suffers from PSP and was diagnosed with the condition around 10 years ago now. At first it was thought he had Parkinsons as the two are very similar.
My dad is no longer able to speak properly, although he does have better days when you can understand him more. He finds it hard to keep his eyes open and has a very difficult time walking now and seems to shuffle along at a very slow pace. He is also very cantankerous too and does not listen to what my mum tell's him and consequently he has had many falls where he has cut his elbow open, his back and head! His ability to swallow has also deteriorate and it is very hard for me to watch my mum feed him as he chokes and it makes my nerves bad!
I have been reading all of your blogs on here and it is very comforting to know that others are going throught this (not that i like the fact that others have to go through this!) as it is such a rare disease that most people have never heard of it, let alone know what you are going through!?
My dad seems to just take each day as it comes and is still very happy go lucky. In all the time he has has this horrible disease i have never once heard him complain or ask the question 'why me?'
It would be nice to hear from others going through this and commenting on how they cope as i find it very hard to talk about and open up, i almost block it out what is happening, which isnt very nice for my poor mum, who is my dads full time carer, as i know she would like to talk sometimes but i just find it too upsetting....
Please feel free to leave any comments and advise.....
Amy x
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Amy_Brazier
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Thanks for posting your blog about you dad. It's a lovely picture you've posted of him
My dad was diagnosed in March 2009 at the age of 70. His condition declined quite quickly after diagnosis. He was walking normally in March 09, ended up falling in November 09 and had to use a Zimmer frame much to his disgust! He is now wheelchair bound. He struggles with his speech too and it is really sad to see him like that. He's embarrassed to talk to people when they come over to visit him. Sometimes when he talks to me, I find it difficult to understand what he says and I have to keep asking him to repeat it, which makes him frustrated. Regardless, he still keeps smiling!
I understand what you mean by the swallowing issues. Initially, when I would come to visit my dad I wouldn't eat with him at the dinner table because I didn't like to hear him cough. Sometimes when I stay over, I can hear my dad coughing in his room and it really scares me. So I always end up walking into his room to check if he's still breathing. It's just my paranoia.
It is extremely important to open up and talk to those around you (even here too) about what's happening. My mum ended up in denial for about the first two years of his diagnosis as she didn't understand it was terminal. Now, she's acknowledged that his condition is terminal and that has been a huge step for her.
I wish that I could see my dad more than every week/every other week. I live 2 hours away from them via car and work in central London.
I'm only a couple of years older than you and happy to talk/help with anything. I lost my brother in a road accident and I dealt with the grief extremely badly. I didn't talk to anyone and just felt angry all the time about why he died etc. His death has helped me to deal with the issues that I'm facing and will be facing with my dad. I don't talk much to my sister about my dad, it's not a topic of conversation. But I have a close group of friends who I know I can call on whenever the need be to talk to them. They don't know what PSP is, but just having someone with a friendly ear to talk through things helps a lot.
My dad suffered from PSP for 4 yrs. and while it is very hard for the care givers, its even harder for the patient themselves. A strong independent man suddenly becoming dependent even for something so basic as eating, can you imagine what it must do to him? his anger, stubbornness , irritability are not just understandable, but also if you read, a part of this condition. Its not that he wants to be irritable to annoy your mother. Its one of the things that happens in this condition. Ability to be rationale doesn't work that well.
And to be honest, i dont think its very nice to block this out just because you find it upsetting. you need to face it and be your parents support.
My mum passed away long back and i was my dads care giver .
Trust me now that he's gone, i wish i had done more.
is there anyone else your mum could talk to- sisters, friends, people from a local support group? You both need support in dealing with managing PSP. Writing about it definitely helps me work things out. There are so many challenges with PSP, it takes up alot of head space!
You'll find a way that suits you, and we'll keep blathering
Sorry to hear about your Dad's problems. Does he just cough on food or is it when he drinks as well? If it's when he drinks you can get a substance to thicken the drink slightly which will mean that he is less likely to cough on it. If its food that makes him choke try mashing or pureeing things. Do you have access to a speech and language therapist? They can advise. Also, the PSP association have a recipe book full of meals suitable for those with swallowing problems. Their website is
Don't beat yourself up and make yourself feel guilty - I'm sure all of us feel we could be doing more to help our loved ones. You do need to try and find a way to release some of those feelings and this is as good a place as any!! Feel free to come and ask questions or just let off steam if you want to! We won't judge and if we can help, we will!!!
Hi Amy - the best thing about this website is you can say something and there will be someone else who does know exactly what you are going through or talking about. My dad had PSP - possibly the most cruelest thing I have ever witnessed - an active full of life, slighlty overweight but fit and healthy chatterbox turn into a very thin frail man who could do nothing for himself. I think the final straw was the talking - once that had gone I think he gave up a bit - he really fought and fought but it tends to keep throwing you another challenge!
Once dads swallowing got bad we had to get a peg tube fitted - that wasnt nice - he was just hooked up to a machine all day and food was a big thing in dads life before that - he used to eat for 10!! But at least it did stop that awful coughing - its scary - he used to almost stop breathing sometimes.
But through it all he kept his sense of humour and never moaned ONCE!
Just be there for him - tell him every day you love him and make him laugh - give him lots of cuddles!! I have a great memory of putting headphones on dad and him singing out loud to Roy Orbison - it was terrible singing but I smiled BIG that day!! And a wheelchair snowball fight we had over winter - he loved It!! And watering the garden with the hosepipe - he thought it was hilarious to spray us with water! Hold on to the good bits they make the bad bits easier xx
My husband was initially diagnosed with parkinsons, then they thought psp or cbd as he got a lot worse quickly, after he passed away I asked for tests to be done as I wanted to know for sure. 6 months later I got the results he had parkinsons and CBD together drs didn't think that could happen but it did.
My mum has ( as they would say) Alizimers, Parkinsons,Breast Cancer, Lewy Bodies, PSP, and is also a Diabetic.
Do you know what, SHE is STILL my mum and the best in the world.
I am with her every day fo hours and leave her at middnight.
I never told mum she was unwell because i know her so well she would have worried herself away.
Instead i perform an oscar winning performace all the time when i am with mum for her ,and again when i am around other people perhaps for my sake.
I thank my mum and dad for the upbringing they gave me, Because that is the reason that i have the patience, personality and all the skills i have because they cared for me.
Oh yes there is a constant fight going on in my own head, But that as they say is a book/film to be made.
Very afraid of dying my dad told me that from the moment WE are ALL born we are dying. We just don't know where when or how. So enjoy life and be proud of who you are. Believe me this thought has kept me going many many years.
I never talk about people having disability,s I prefer to talk about their ability,s.
As we all have qualities that make us who we are.
There are many things i would love to yet do in my life. BUT i pressed the pause button on my life because i would not be here if it were not for mum and dad.
My main regret is that mum is being STOLEN away from me every second we breath and because of PSP there is nothing i can do..
I have many ways of caring for mum so i will plod on because i feel like the richest girl in the world... Love Valerie xxx
Valerie - I identify totally with ALL of your words. I too have my life on pause but do not resent this at all, as I think of all the times my mum came in from a tiring, noisy day's teaching, with a splitting headache, shattered ..........and then listened to all my worries as a school girl, before running the vacuum around, before going shopping for groceries, before cooking for five and then 'being there' for the whole family & being a loving & supportive wife, when my dad needed some TLC ............it cetainly puts the little I can do for her now, in perspective! Your mum is as lucky to have you, as you are to have her. bron x
Hi Amy, my dad also suffers from PSP and I also took it quite hard. I am 29, and it sounds like my dad has very similar symptoms to your dad's. I noticed that you live in London, as I do - will you be going to the London Symposium in September? I will be attending with my parents.
Take care, it's hard, but being able to talk about it in this way with people who understand is good.
Sorry i have not replied sooner but i have been away the last few weeks. Your comments have really helped me and i have now started talking to my mum alot more about my dads condition, which i think we both find helps.
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