How is this going to go?

[Saddaughter]

I saw my Dad today. I don’t think I was ready for the change in him. Early days ... what is ahead?

[Dadshelper]

Welcome to the site. What's ahead? That is hard to say, there are a variety of symptoms associated with these diseases but not everyone will have the same ones. The common ones are increased speaking/swallowing difficulties, body ridgity and weight loss to name a few.

If you give us a little more info we can offer better advice.

Ron

[Melhukin]

I remember coming away from visiting my father and struggling to come to terms with his deterioration every time I saw him.

I remember phoning the PSP helpline many times for advice.

You need to remember to look after yourself too.

[LuisRodicioRodicio]

Hi Saddaughter!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By HealthUnloked private mail I am sending you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan. The information I am sending you through this private mail is a compilation of our own experiences during 7,5 years and also of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.

Hug and luck.

Luis

[NannaB]

It will be a long hard time for you all, especially for his main carer. Keep visiting but remember whatever changes you can see, inside he is probably feeling the same as he always did. When you visit, tell him all the good things that have happened to you, what you have done. Talk to him a lot but if he is having difficulty speaking, don’t expect a long conversation. When I asked my husband why he hadn’t answered me, some time later he said he had in his head. If he is still at home, do what you can to support his carer (especially if it is his wife/partner) who may be feeling very isolated. If you can sit with your dad for an hour or so, so he/she can have a bit of time alone to do things they can’t normally, it will refresh them to carry on. If you can’t get there very often, phone, FaceTime, anything to let your dad know you are thinking of him but try not to be sad. Try to make him laugh. I was really blessed when my sons came. It was difficult as they have work, family etc but they kept in touch often and my husband loved seeing them.

Best wishes.

XxxX

[bgentges]

“What is ahead”, that is the question we all ask. We talk to the Dr, we talk to those who have been there before, we search the internet till we are more confused than before we started. The only thing consistent, every victim of PSP is different

[Ettavb]

I asked the same question re: my mom. I researched and found in American sites (at the time) that she had about three years to live. That was 8 years ago now. So though I will refrain from saying what “will” happen, I would like my story to serve as the cautionary tale that your experience could be different. My expectations were set by my early research - and that didn’t serve us particularly well in terms of planning. I can say finding this site has been the best and most helpful place for me as a daughter of someone who has CBD.

[daddyt]

What's ahead? As others have stated, PSP will affect every loved one differently. What you'll need; patience, compassion, unconditional love and sense enough to know you must make time for yourself. Oh yeah, a good sense oh humour will go along way.

Tim x

[racinlady]

Instead of worrying about what is ahead, try to make each visit meaningful for both of you. Whoever his main caregiver is will need an increasing amount of help as his disease progresses. It's important to be there for that person too. Even when your dad can't communicate it, he will enjoy hearing about what is going on in your life so don't stop talking just because he does. Take care of yourself too.

Pat

[Katiebow]

It's hard to watch someone you love decline in front of your eyes but as NannaB says don't give up on him he is still that same dad inside and probably understands everything going on but has lost the skills to communicate his love back to you. My husband loved when his family Facetimed, I did all of the talking but I could see the delight it gave him to see his grandchildren playing and my son and daughter in law talking about their lives 200miles away. He loved to feel their touch when they visited, don't be afraid to touch, kiss and chat to him he will love every minute of it. It must be the worst thing in the world not being able to communicate and show your emotions when it's all going on inside, bless him. Keep strong and keep communicating it will mean the world to him.

Love a Kate xx