New here.

[Emberz]

Hi I'm 26, iv just found out today my dad has psp.. I'm very worried about what is to come... 😞

[Yvonneandgeorge]

Hi there was husband was diagnosed with PSP in January we think it all started about 7 years ago, it is a horrible illness he can hardly walk, so I think it will be using the wheel chair very soon, we went to the hospital today in queens square, and saw a really nice doctor, who said they might take George into hospital to do some test, which we felt very happy about as he has not had many tests.

Also they are doing a new study into psp sponsored by the psp soceity, which is good to hear, which may benefit people in a few years to come.

This illness is ver hard on them and us as carers, which is getting more tiring. It is our wedding anniversary today, we have been married 47 years and we should be enjoying ourselves, but it was not to be.

Not sure how far you dad is into this illness? This is a wonderful site, people are so lovely and supportive. Love and best wishes Yvonne x

[easterncedar]

That's a hard deal, Emberz. You are young for this, but just the age of my guy's younger daughter when he was diagnosed four years ago. It's a tough road, but it isn't the worst thing. He is still here, still his loving self. His handwriting is gone, but he can still give great hugs. This site is a wonderful source for information and comfort. We are all in this together. Hang on. Love and peace, Easterncedar

[coyle51]

Hi Emberz

Sorry to hear of your dads diagnosis. It's a bit of a cliche but just take it bit at a time. IT took me 6 months just to read all the info about PSP as it seemed overwhelming. The people on this site listen, understand like no others and support. There is also a lot of useful info too. My mum was diagnosed in sept 2012 and probably had it for a few years before that and despite the difficulties and tough times, she still has joy in her life and a very naughty sense of humour. Good luck with your journey and do use this site or anything and everything. Coyle51

[jillannf6]

hi i agree with what the others have said above

take it slowly = pref. 1 day at a time- and try to enjoy the time you, have with your dad - he may not be able to communicate with you but he understands everything which is happening to him!

lol Jill PSP person in the uk

[NannaB]

Hi Emberz, I'm sorry your dad has PSP. It is devastating for him and everyone close to him. I don't know if you are living at home or if you have a mum who is dad's main carer but being a full time carer to my husband and having 3 sons, I really value their support. We love it when they visit, which they do often, giving practical help but also making us laugh. If you are in the UK there is lots of help available to make things safer and easier for your dad. Things like house adaptions will have to be thought about but please try not to worry about what is to come. If you do, you are in for a few miserable years. Spend as much time as you can talking to and doing things with dad while he is still able to take part in activities. As Jill says, and she knows better than any of us carers, however his health deteriorates in the future, however uncommunicative he becomes, he will know what is going on around him and will still be able to laugh in his own way.

Make happy memories while you can.

Best wishes. X

[GillJan]

So sorry you have had a need to locate this site at all. My husband was only diagnosed last November so we are fairly new to this condition. I know how scary it is if you look at all the symptons and read all the bad things that PSP can throw up. I made a conscious decision to take it a step at a time. My husband only knows what he needs to know about PSP, to tell him everything that could/could not happen would be too much and drag him down needlessly at this stage. It has been difficult to watch such a fit man (he was a fire officer for 32 years) lose so much weight and have such balance problems, but each step of the way there has been things we can do to help/manage each situation. If you are based in the UK, I would recommend you find and talk to the PSP Specialist Care Advisor for your area, this person can be found by phoning the helpline number on the psp website. I have to say our advisor took the stress from me at a much needed time and the help we both have received from all areas has been incredible. Please choose carefully what you read, I try not to read what is not applicable to us at the time, it only serves to make your imagination run wild and who knows if you will ever be in the same situation but if you are you can always look up past posts to help you. Please take care of yourself and post here whenever you need to rant, ask for help or simply have a question.

[Maxine12]

Hi lovely sorry to hear you to have a parent who has this horrible desease.. I am 29 and look after my mam who has psp, I have brothers and a sister the youngest being 19.. It's so sad to watch your parent go through this, we think my mam has had it for just over 3 years but only diagnosed 6 months ago.. The one thing I am greatful for is that it seems to be progressing at a slow steady pace, I find it hard when people say one day at a time but once this news sinks in and you adapt to what is, it does make sense as I find every day can be different we have good and bad days. I used to not want to look things up or even come on this site, but as time has gone on I look on here more and more, I laugh and cry at some of the things that relate to my situation on here, but it helps knowing people are going through the same so stick with it..

Lots of love and hugs to you

Maxine xx

[blackcushion]

Bless you , just try and take each day as it comes but its a tough journey , I lost my mum last june and mum was only diagnosed in the october after a full down a stairs backwards which I think escalated the disease . We are ten months on after my mums death and miss mum so much , try and enjoy the time you have together I was lucky to have three brothers and managed to keep mum at home with help from a care team and mum was able to die at home. Take care xx

[peterjones]

hi emberry you are very young to have this thrust on your shoulders take the advice that people on this site give you mate you will=feel a lot more confident and we are all in the same boat and either have this psp or a carer for it so if there is anything you are not sure of or want to have a cry or just explode someone will always listen to you and try and help you out matey see yer peter jones queensland Australia psp sufferer

[GenaBenedict]

IT IS NOT A VERY PROMISING DISEASE.MY CHILDREN ARE IN THEIR 50'S MY DAUGHTER IS IN SEMI DENIAL.IF YOU ARE TO BE HIS PRIMARY CARE GIVER, PLEASE TALK TO SOME ONE THAT UNDERSTANDS PSP & WHAT TO EXPECT IF YOUR DAD IS ABLE TO SPEAK ABOUT IT., YOU SHOULD CHECK WITH ANY MEMBERS OF YOUR FAMILY & GET THEIR IDEAS ON HOW TO DEAL WITH CARE ,. IT HURTS WHEN CG MAKES YOU FEEL LIKE YOUR MAKING UP YOUR PROBLEMS DON'T QUESTION HIM & MAKE HIM FEEL LIKE HE'S A LOAD ON YOUR HANDS ,MY SON IS ALWAYS ASKING MY CG'S WHEN HE CALLS & HOW I,M DOING HE THANKS THEM FOR MY GOOD CARE, HIS

WIFE IN THE MEDICAL FIELD & SHE IS AWARE OF THE PSP PROGNOSIS. HOPE I HAVE HELPED YOU A LITTLE. GENA

[gwend]

hello Emberz

my dad has PSP too. I am older than you ( 40 this year! and my dad is turning 80)

it is scary as he has changed over the last 5 years

yet he is still my dad

I see the same way he looks at all the people he loves. the way he smiles.ot the tickle in his eye when you make a joke!

I hug him super tight every time I see him ( I dont live with my parents)

I call as much as I can as I need to boost my mum too.

I know where we are heading - not sure how long it will take.

you have to be patient.

my dad was angry at the beginning, He is ok now

Be ready to help maybe it is cooking or something else.

talk about everything and anything .

show him how much you love him - it will help both of you.

Lods of Love from London

[jimandsharynp]

Here's some advice from one who lost his wife to PSP last year.

Don't worry about stages (there are supposedly four). Let's face it, a patient can aspirate, get pneumonia and die in even stage ONE. They could fall, get head trauma and die in stage TWO. Why waste time worrying about stages? To me it's a waste of time. You can't predict the date of death, length of life, etc. so why worry about it? My strategy was to literally take one day at a time and not look forward or backward.

PSP is NOT a one-size-fits-all disease so each patient is different to some extent. I've listed 30+ symptoms that others had but my dear Sharyn did NOT. Futile to worry about symptoms when you may not have to face them. Again, one day at a time is the best we can do in dealing with PSP. Oh, and don't allow PSP to redefine who you or your loved one are. Stay the same person and remember the patient is doing their very, very, very, best so do the same. Hope this helps. Jimbo