My wife first went to hospital in early 2020 with a soft voice and her face looked as if she had had a stroke, in March 2022 she wrote an email to me which I have pasted a part of below.
I have not corrected it as I think even the use of grammar, spelling mistakes and typos help to give an insight into the problems she was facing, before PSP she had a good command of the English language and her spelling was fine.
To put some context to what she is saying i was trying to get her to talk loud and also trying to encourage her not to speak automatically but to sing, shout, put on an accent, anything that required a different part of the brain to instigate the speech; and "arsey" is meant to try and say it with anger in your voice
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Hey i I just wanted to try to explain What i.mean when I say I can't carnt get my voice any louder .sing or getting arsey and shoutv at people.so that means I only get a whisper.but by the and keep trying to get the louder words but most of the time I can't seem to get it there .imagine looking at your arm. Well that's what I mean if you put a few words stuck on you like whisper ..louder .sing and shout would at the top followed by.sing and louder and whispersta the day it makes any sense Whato im trying to say. Well
I look for the words.
and basically I see them for less than a minute.
just dissapears.and then they start to return and disappear quicker than before.This is where try to say something and It doesn't work.so I do a silent damn. don't let it get you down I tell myself . But its stops the conversation.and I'm sorry enough that she's in not ignoring you do please don't think I do.
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I hope this will give you a glimpse of what your loved one may be going through,
Written by
Zerachiel
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The insight is really helpful. I've many times tried to get my husband to tell me what goes on e.g. does he have the words lined up in his mind before he tries to speak, but he says it's not like that. The words seem to disperse when he's looking for them. It's particularly difficult when the neurologist does the word finding task under time pressure - when my husband could barely find the one "f-word" in 60 seconds - but then described that he "found it frustrating". He'll use the words he finds even when he knows they're not the right ones or not in the right order. We're both pleased when we can figure it out. Who would have guessed that "gas light kitchen" means "go cook my dinner" while "deny fault" means "I didn't do that thing you just said I did". I often try to imagine what it's like when you have something to say and can't make yourself heard. Your wife described it so expressively. Thank you very much for sharing. 🫂💜
Dear Bergenser. So good to hear this and thank you also for sharing how you and your husband are managing to find a way (mostly) to communicate--when it clearly is SO DIFFICULT.
Love the 'deny fault' ---glad that PSP hasn't taken away his ability to disagree! Important in all marriages. Eleanor
Thank you for your post. What an amazing woman your wife was to have been able to write that--to give insight into what she was going through. It will be so useful to others
It is tragic to have heard about her early death and you and your 4 boys being left without her. I know that the years leading up to her death will also not have been easy for her and for all of you.
Grief is a funny business, unique to us all and comes and goes at different times. I know that it is early days for you all. You may already know about Winston's wish should your boy's want some space to talk? winstonswish.org/
They also have a new 'talk grief' on-line site for teenagers. talkgrief.org
I have met several adults who used their services when they were teenagers and found them so useful. Eleanor
ps My friend's grandson still refers to his grandfather in the present tense. His grandfather died 4 months ago.
That was wonderful Zerachiel! I have similar problems, and only talk to my Husband when he can’t hear me! On the second repeat I am so angry that I SHOUT, and he just says I don’t have to shout, talk normally! I thought I was!! How do you understand and he doesn’t?? Thank you again!!
Wow, that's amazing. I wondered (as most carers will/will have in this situation) just what was going on in my husband's head when he couldn't speak properly. And why he just stopped reading and watching TV. It's frightening.Thank you for sharing this insight, and at this difficult time. Big hugs 🤗
I understand this all too well. Aphasia is the culprit, and it doesn't get any better. Word retrieval becomes a daunting task. It's an interruption in brain messaging and trying to communicate leads to frustration. At this point, I've all but given up on writing - my preferred form of communicating. It's not unusual to have a missed word or typo, but to miss several words in a paragraph... unacceptable. Aphasia is now making its way into my speech. Sometimes it's better not think or anything at all. * I've corrected half of this reply. See if you can spot the missed word.
I guess the missing word is 'its better not (to) think'...... Keep plugging on and don't let the b*rstards grind you down! Beer is probably permanently damaging my communication and I have no excuses...😂
Having just reread your missive, I thought it was good, unless I read what I expect to see, which I think I possibly do, your reading made absolute sense to me. That was brilliant, so well done to one of us and I think it was you!! Don’t be too hard on yourself it’s only you that knows!! I met girlfriends for lunch last year and because one of them has poor sight she finds reading difficult and my speech is laboured so talking isn’t easy, we haven’t communicated for a year, and that puts it into perspective for me! How to nearly lose a friend because of Mother Nature and through no fault of our own!!
It was really touching to read what your wife wrote - a true insight into what it is like to suffer this disease. I am so sad that it is so hard to communicate with Ruth now and I know that she feels lonely because of this, even though we are always at her side.
She wrote an email, very smart . I never thought of that and it will be a good thing to try to communicate with my family. Thank you for sharing . I used to be more fun to be around . I was always good at the one line response and usually left them laughing but not any more. One can not come up with a play on words when the words have disappeared and will not come back until you stop trying to look for them.
I think people usually and naturally look for mistakes as a way of quickly deciding if the person who wrote what is being read or said what is being heard is intelligent and worth reading or listening to. It is one of the ways that we descide if we can trust the person we just met or if we should run away. We do it without thinking, but it destroys any effort that the patient is making.
Time is important to everyone and every one is impatient . If you do not give extra time to the PWP and instead he feels rushed and is unsuccessful at communicating with you then they will just stop trying. The person with Parkinson's is not stupid. I know all the signs point that way but if you believe that then the person with PD will know it , and just write you off.
Try an experiment , Pretend that you can not say anything until 3 seconds has elapsed after the other person in the conversation has stopped talking. In most conversations you will not get to say much if anything. In a group conversation you will not even try it, even if they ask you a question, someone else will speak for you.
This is heartbreaking and probably is exactly what my husband would write if he could. Thank you for sharing. I may read it to him, perhaps it will help him feel less alone in his head.
Thank you for your post. It really hit home with me. My husband is still in the early stages, but word finding for him is difficult. Your post does help put things in perspective. So again, many thanks.
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