Feeling scared and not knowing what to do

[Libbyjlou]

My dad has been diagnosed with psp. he's getting worse every time I see him. I feel so helpless I try and talk to him but he just says he's fine. my brother is trying to get help and advise for all off us and I also want to be there for him too. this is scaring me so much. I don't really know much about psp but the more I read the more upsetting it gets.

[Pjgil]

Hi Libby

Welcome to the forum, this is a great place for advice and support.

My dad was diagnosed last month so I know where you are right now. Reading and gaining information is what we are compelled to do, I read so much in the first week that I couldn't see straight!

It is a very frightening condition but the best thing i can suggest is take a deep breath and walk away from the screen for a few days and give yourself time to digest what you have found out and grieve. Then come back and read just a little bit every day for a few days and repeat.

I have joined my local psp group, now going to that was scary but I have to say wonderful as well. It was so sad to see others with it but great to have face to face support. It made me feel less isolated.

Is dad getting worse every time you visit or are you looking more closely for symptoms?

Contact the pspa, they will ring and write to you with clear information. Let dad read it if he wants.

My dad says he is fine too, nothing we can do he says so we just have to get on with it. Dont forget it will take time for him to adjust too. How old is your dad and how is he in himself?

Take care and remember we are here for each other. Ask as many questions you want, come for a rant, tears, hugs and the odd chuckle

Pj x

[Heady]

Hi welcome to this site. I know coming to terms with PSP is very frightening. Unfortunately, that doesn't improve, with knowledge or time. But, like everything you get use to the fact.

Your Dad will say he is fine, that's because he is. PSP attacks the neurons, the message carriers in our brain, so his mind is fine, body as fit as it ever was, it's just the messages are not getting through, to tell the muscles what they need to do, to achieve what ever task needs doing.

When walking, try to remind him what to do, ask questions in different ways, try to bypass, which ever neuron is not working that particular day.

The one thing you can do, is make life as normal as possible, for him and your family. Yes, life as changed, but it's not over. You have to discover new ways to enjoy life with your Father, to help him live. Whilst still able, do what you can, take him out, meal, theatre, what ever is your thing.

It is one day at a time, try to avoid looking too much into the future, concentrate on today, this will have enough challanges, without worrying about tomorrow's.

Stay on this site, feel free to rant and rave, kick and scream, we all do. You have just inherited a whole new family, who will listen to you, help with hints, suggestions. This is a rare disease, nobody out there knows much about it, least of all the professionals. On here, we all support each other, you and your family are not alone, we have your back.

Lots of love

Heady

[doglington]

Welcome. Yes it is terrifying and gets no better. Give yourself time to adjust to the news. From now on life is adjusting to the "new normal" which changes all the time. But we do it and you can survive. My husband was diagnosed 3 years ago and we will celebrate his birthday in two weeks.

My first suggestion at this stage is to focus on making good memories.

There will still be good times for your family. Love and humour is very powerful.

Do use this site. It is a Life Saver.

Love to you all, Jean x

[Satt2015]

Hi Libby

I'm sorry for the need to welcome you but you've just found the best place in the world for all your answers and for all your screams!!

We will all help you as much as we can. I would suggest asking the GP to refer your dad to his local hospice, they are NOT just there for end of life care and the support you receive from them will be truly amazing and you'll wonder how you ever managed without them!

Your dad will also need the support of a neuro team including physios and speech therapists.

There is help out there, of which you'll find out most of through the beautiful people on here! Ask anything no will will judge, someone will have been going through the same thing!!

Make as many memories now and keep telling your dad how much you love him!!

Keep us posted

Big hugs x

[Libbyjlou]

Thanks everyone xx

[Julieandrog]

Hi

My daughter is in her mid thirties and I know she gets upset as she loves her dad so much. She like me has now reached acceptance in some ways it is a calm place. She just cuddles him, talks to him and our year old grandson climbs up his wheelchair with a sloppy kiss!

Julie x

[Millie1218]

Hi Libby

You have just found the best forum ever. My dad was diagnosed in September and I can honestly say that without my new found friends here, I don't know how I would have coped with all the information and emotions I have had to deal with these last couple of months. Everyone has just been brilliant. This is a rollacoaster ride full of ups and downs and everyone deals with things differently (I just keep busy). The best advice I can give is to make the most of every moment you share with your dad. My dad has the warmest hands ever and always holds onto mine to make them warm, this has been the same since I was a little girl, it just seems more special now and he holds onto me from the moment I see him to the time i leave for home. My dads cuddles are the best and I am making the most of every one. I see my dad every day sometimes twice a day and although there have been plenty of bad days this forum has taught me to look forward to the next good day. Take each day as it comes and treasure the time you have together. Lots of love xx

[Nanny857]

Hi Libbyjlou, sorry to hear of your dad's diagnosis but you have come to the right place. Here you will find lots of information/advice from the 'experts' i.e. carers who are dealing/Living with this awful disease and also we are lucky to have some who have PSP contributing as well. You can vent your feelings and no one will judge you as we have all been there and have received lots of comforting replies. As others have said, just take each day as it comes and make lots of happy memories.

Lots of love, Nanny857 xx