My sister has had PSP now for about 3 year... - PSP Association
My sister has had PSP now for about 3 years,can't speak much now, just stares blankly.Can she be aware of what we are saying to her?
Yes, very. Don't talk about her in front of her. Speak to her as you would have before this awful illness took hold. My husband rarely speaks now but ask him a question with a yes or no answer and he will put thumbs up or down. He sometimes gets it wrong or puts his thumbs in his fist but we know he understands what we are asking him. It's easy to ignore people who don't respond but it must be awful to be that person, wanting to respond but unable to do so.
Nanna B
I agree with Nanna B , my husband understands everything and he takes part in family gatherings (after his fashion) and generally enjoys them but will always let us know when he has had enough!
Ironically I think this is possibly the worst aspect of PSP, the intellect is still intact but the brain and the body cannot keep up.
Take care, kind regards
Dorothy T
YES, she is aware! Have patience when talking to - and listening to - your sister. With PSP, it's extremely difficult to get the words out, so if you're reasonably sure she heard your question, allow time for your sister to answer. We're all uncomfortable with "long" pauses in conversation, so the tendency is to jump in and answer for someone, or ask the question again. By doing this with a PSP sufferer, you've essentially "reset" the clock. I usually allow 60 seconds or so for my husband to answer a question, before I re-ask it.
We do "thumbs up/down" for yes/no. If this doesn't work for you, you could put your hand in hers and have her use 1 squeeze for yes/2 squeezes for no.
And when talking to her, slow down a bit. I get the feeling my husband gets a little confused and overwhelmed when people talk fast. And let's face it - by the time the PSP sufferer gets to your sister's (and my husband's) stage of this horrible disease, so many things have already been taken away from them - balance, vision, etc. - that the least we can do is slow things down for them.
Best wishes...
-- Connie C.
Thankyou very much very helpfull.
I am sure she will understand EVERYTHING you say and know how much you love her and are with her. My sister had PSP and I so understand your journey. I wish you both strength and courage and think of you all. Flicka
I used one blink for yes and two for no with mum as she could still do that even in end stage. Her hearing was unaffected and she knew exactly what was going on.
I agree with all the previous comments. My wife understands everything although because of her inability to communicate we are now having to consider power of attorney - but she will still take the decisions! Her methods of saying yes or no include thumbs up/down, eye blinking, hand squeeze, head nodding (just) and foot tapping. I think if I were a PSP sufferer I would rate being unable to speak or write as the worst part of it (so far).
Barnacle
Hi
I am a regular reader but this is my first contribution.
I felt constrained to respond because your post struck a chord with me. I also have P.S.P. and I fear I drive my wife crazy by not replying.
Hi, Weedy2! I'm very interested in your comment, because of the difficulties in communication that have been slowly developing for us. Can you describe why you don't reply? Sometimes I think I'm just not giving my guy enough time; sometimes it's obviously too hard for him to form a coherent thought - lots of times I'm out of the room and out of sight when he starts talking to me. But then quite often still he's quick and funny as can be. I think it would help me to be more patient if I had a better idea of what he is going through, so I'd be very grateful for your thoughts. Thanks, Easterncedar
I'm interested in how Weedy2 answers your question as when I asked my husband once why he didn't reply to me he said," Thought I had, I heard it in my head". It still took him a long time to say that but I am now convinced he thinks he has said out loud what he is thinking.
Nanna B
Yes, yes, and yes! In many cases the people with PSP are aware of what is going on but simply can't respond. I consider it one of the most terrible part of PSP. They may be unable to speak, eat,walk,or basically do anything but totally aware of what is going on. Imagine being captive in a non functional body, unable to interact, but totally aware. This disease is evil for sure!!!! The PSP brain may have issues collecting cognitive thoughts to speak them but they know what they hear and would like to say. My first wife had CJD another brain disease. She couldn't respond in any way near the end. My mom visited her and when leaving said "I love you darling" to her. A tear formed and ran down my wife's cheek. It was the first response we had seen in many days. We thought she was "unaware" but obviously we were wrong. Be cautious what you say, your loved one may understand what you are saying. Don't act like they "aren't there".
Jimbo
Thank you so much for your reply. We do speak in front of my sister and about her, at her check up recently with the PSP nurse I felt very uncomfortable as we were discussing Rose as if she was not there. I will not let That happen again. Just so sad my sister was a very vibrant active character now she can't walk and barely talks.
Thankyou Jimbo,we will try very hard not to speak in front of her about her.We had a speech and language therapist in to see her and she showed Rose a chart with the alphabet on and aske her to point to R for her name but she just stared at it and then she blurted out " I don't like you " to the therapist, what can you make of this?
It shows here mind is good, she is VERY much aware, and when necessary will speak her opinion. Bless her for that. Remember, the PSP brain works slow, VERY SLOW. You can't rush an answer out of them. Be patient, give her time to speak or make her wishes known. Also, distractions will clog the mind and not help. If my wife is distracted by TV I have a tough time getting her to comply with my requests. If you aren't there yet, you will be at some point. These are some of the things you don't read much about because they aren't major symptoms to some caregivers. The reason PSP patients aren't very active in conversation is that the mind works slow and by the time they form a thought the topic/conversation has moved on. We jump in and out of topics easily with our healthy minds, they, not so much. These are my experiences based on my wife who has PSP.
Jimbo
Hi Nannygoon -
Yes, your sister will be aware of everything - Tony's replies were thumbs up/down or squeeze of the hand. The best bit was when I asked for a cuddle, he still knew what to do.
Mo
before my husband was diagnosed with Parkinson's I would speak or ask him something and he would appear to look blankly at me , of course I would get frustrated and sometime annoyed .and say are you going to reply or sarcastically ask him if the question was too hard for him . so cruel on reflection but neither of us realised what was happening .. Such a cruel complex illness .
.I now tell everyone not to judge the book baby it's cover .
Cabbage, so very true! I can totally relate. However, we shouldn't feel guilty for those instances. We need only feel guilt if we deliberately did something to hurt them. As I found out, anger at PSP and it's effect can cause us to over react. Often we seem anger at our loved one but I believe we are only upset with their detereration we want them to be their old self so very much.
Jimbo
My wife learned very early to use finger language and she was able to respond to all the discussions that she was involved in. Never leave her out of the conversation as a person with PSP has her mind as it was before the PSP took hold. Even on the last day of my wife's life she was responsive to our discussions so never let her out of the conversations.
Hi All
I use a lightwriter but am not fast enough. For example it took me 2 hours to type the first post.
Thats where my husband is too, good for you! you need to do what you can at what ever rate you can. that is how we know you psp people are infact cognitivally intact. Slow and steady wins the race, if the rest of us can just be patient! 
joan
Laroux, amen to that.
My guy said to me a little while ago, "You're going to have to slow down quite a bit to keep up with me!" I laughed with delight - so wise! And so I try to slow down, to match his pace. We pull together better that way.
I am new to the forum but have been on this terrible journey for what seems like forever, my husband has just lost ability to talk but understands everything - brain is only thing not affected at this point he can still use ipad very slowly with a stylus so types main words to me, sadly this is coming to an end as his hand is almost useless too
Suzy
Queensland
My dad had PSP for some years. When i would go round to visit it would take a few seconds for him to lift his head and focus on me then his face would light up. It is not easy for them to focus. I would go in and hug him and do silly things like pretend to fall on his lamp and he would laugh. Well it was more of a noise but it was so lovely to hear. Your sister is trapped inside her body. She can hear everything and knows what is happening to her but her brain wont let her respond. Tell her silly jokes because inside she will be laughing and helping her to have some kind of normality in what has to be the most soul destroying disease out there. For your own peace of mind, always know you did your best to keep her happy. Also a walk along the beach or forest or whatever you have. Wrap her up warm and let her feel the cold wind on her face. My heart is with you. Be strong when you can. Katrina Southampton x
Thankyou so much for your lovely reply. It is just so sad to watch her like she is but i will take your advice on board.
For many people PSP affects the eyes - so downward gaze is a problem (looking down to read a book etc) Double vision is also a problem - we tried a eye patch but that really bugged her. Blacked out one of the lenses of her glasses with tape and that helped greatly
