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PSP Association
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Curious

Hi all

Firstly Thankyou for all of your support.

Just curious to know if anyone else’s loved one lost the ability to speak.My guy has not spoken for nearly two years and his swallow is worsening. His only form of communication is to give a thumbs up for YES or swipe of the hand for NO.

He also has lost the ability to write/text words are jumbled and confusing

Thanks

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Larry hasn’t lost the ability to talk to date but it is getting very hard to understand him. Walking, talking, eating all go eventually.

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Sad to say my husband lost the ability to speak. He had to struggle before he died just to say a few words. He had a board with letters on it and that worked for a while but one day I had no idea what he was trying to tell me!

Sad to say what you describe is very common.

Marie x

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My son died of PSP on May 4, 2017. He was under hospice care. He requested to NOT be fed. He had had a PEG put in about weeks before because he could not pass the swallowing test. He was in the hospital for aspiration pneumonia and sepsis.

When he gave up being fed he had lost his speech, his ability to walk, to get up, to see clearly (TV, computer, books), he was incontinent, had had a seizure, had thrush in his mouth, a bed sore, etc etc. He was barely 55 years old.

Margarita, Los Angeles, CA, USA

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My husband was reaching the stage of not being able to talk. He new what he wanted to say but couldn’t form the words. I felt like we were always playing Charades. He pretty much lost all language skills. I thought I was losing him. Communication was extremely difficult. Like your husband mine couldn’t read or write either. He can’t work a remote control or the computer. Then the doctor took him off of Wellbutrin aka Bupropion (he’d been on it for years and years) and put him on what the doctor called “good old fashioned Prozac”. I’m telling you that it made a world of difference. I feel like we’ve reverted back to where we were before a major decline. He’s not nearly as confused as he was before. He speaks better now. Not perfect, but he can string a sentence together where before he couldn’t. I was amazed at what a change in medication can do.

Take a look at your husbands medications and see what some of the side effects are. Wouldn’t it be fantastic if it were that simple? I’m so sorry that you’re going through this 😢

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Wow, your post is just what I needed. I have posted several times asking about the effects of anti depressants. Most doctors have told me they seldom work with PSP.,although some on this Forum have had good results. I have been trying CBD oil, which is why I have not started the antidepressant. I am calling today to get the ball rolling. It is worth a try .

I believe I have seen a slight help with the CBD oil. It has been hard for me to get information about a reliable CBD oil where I live.

Thanks

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Hi Sewbears

Hubby has only gone on meds in the last 3months, he lost his ability to speak nearly 2years ago and your right “ if only it was that simple”

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Hi, my husband still can speak but, has real difficulty finding his words. He gets frustrated and does not engage in conversation very much. Especially if there is a group of people he usually doesn't even try to converse.

He is currently in the VA system and we have seen several neurologists. The last one we saw was a movement disorder specialist, we really liked him but, unfortunately he didnt stay long. However, before he left, the last time we saw him, he gave us the diagnosis of CBGD and pulled no punches about what to expect. His parting words were "always insist on seeing a movement disorder specialist". Since our VA no longer has one, they have outsourced my husband to a very good University Hospital. His first appointment is next week on the 20th. I can't wait and have so many questions. I'm sorry for this being so long but, one of my questions is do they think he will eventually lose his ability to speak altogether ? Did your husband gradually quit speaking ?

I know that this group has helped me in coming up with more questions. I am so glad I came upon it.

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When Larry’s first neurologist couldn’t come up with an answer to what was going on with him after a year and a half of tests I took all his information to another neurologist who happened to be a movement disorder specialist. She gave us a diagnosis of atypical immidately then refined it to PSP on the second visit. She left the practice and told us before she left to always see a movement disorder specialist.

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Hi

When all this started I just thought he was in a grumpy mood due to work stress, then one day he sent me a text saying “I can’t find the words “ which was very confusing to me! Thought he had had a small stroke and started speech therapy, eventually all words disappeared but he could still text sentences, now that’s gone and he can’t even spell his children’s names correctly (misses letters) most communication is thumbs up or swipe of a hand for No! I believe he still has a good memory and understands what I’m talking about, although I try to keep conversations not to complex.

Sorry to hear your going through this too x

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Dad lost the ability write before he had an official Dx of CBD. By the end it was extremely difficult to understand simple yes and no.

Ron

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Hello Demlac,

Yes - my husband with CBD lost the ability to speak. In fact, it was just about the first symptom - which I gather is more rare: neuro websites say it is a later symptom of CBD and PSP. But in my husband's case, it was early on. By the "end" we were experimenting with an iPad custom app where he could choose "items" or alpha or symbols to express what he wanted (favourite foods, tv shows, where it hurts, etc.) (he could still point) .

I hauled him off to various speech pathologists and the SALTs told me that he had the "full recognition of vocabulary and language" in his mind, but had trouble word-finding. I later read about "word finding" as a symptom flowing from the part of the brain CBD attacks. The knowledge is all there in your man's brain: It's just that the normal chemical/mechanical pathways - to speech, to movement, etc. - have been blocked/impaired. It is so very difficult, exhausting and discouraging for them to try to communicate that they just give up.

Any way you can find to perceive/understand/"work out" what he wants to communicate is a gift beyond all gifts! It was the thing that bothered my hubby the most right up to the day he died - much more than his loss of movement.

Hugs and Good Luck! XXX

Anne G.

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It is frustrating especially for him like being locked in your own body/mind

It’s strange though I understand what he wants and he smiles so much cause I just get him!

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My father lost his ability to speak around 5 months ago. He puts his thumb up/down for yes/no but you can see that he has started to struggle with this now.

He can no longer do anything else for himself and has become quite thin.

It’s a very cruel disease. I feel like I’m slowly grieving for him and he’s not even passed.

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That’s exactly how it is

Grieving for someone who’s still alive!!!

So cruel and my soul just screams!! Why

It’s hard to see the person who once was and the person they are now although you love them the same if not more..

All the best

Remember :Lost time is never found again!

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Hi Demlac, I have often thought the very same thing ! It's like experiencing different stages of grief while he is here. I've never felt like my heart is literally being ripped out of my chest before. But I have felt it a lot lately. I try to not let him see me but, in truth I sometimes do it in front of him. I feel so alone and the person that would help me in difficult times is gone.

Sorry again for dragging on. I am really trying to cherish every day ,especially the better days. Love and Hugs to you and your family

Quarter

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It just breaks you into a million pieces everyday then you have to repair yourself in some false way and face the next day and then it happens all over again!!

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Demlac, you worded that very well. I feel the exact same way but I didn’t know how to describe it. Thank you

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Hello there

Chris too is losing the ability to speak and find the right words. Some days are better than others, but it's all a downwards trend. His sight is getting worse too, all very frustrating for him.

Keep on keeping on

Anne

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Yes all the same problems for years now, plus the legs have now gone too rendering mum bed bound.

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I am afraid it is part of PSP. Just have to ask John questions that require yes or no answers. We tried a board with letters but it did not really work. He gets very frustrated when he tries to speak and nothing ofany sense comes out. Do keep talking though as usually they can understand he has not been able to write for a long time nor use remotes or phone etc x

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My hubby did not seem to lose ability to speak, but he did stop talking volubly when in company some time before he was obviously ill.

What was most noticeable was his sudden lack of ability to read his books. This was his main activity and he would go through 1 a day generally. When he went into hospital in May, he could read. A week later and he just sat with the book in front of him, but did not turn the page. A short while before this, he had complained he could not get into the story. Some months before that, a Parkinson's test of numeracy, etc showed me he had lost his ability to calculate, or tell time. He was a good mathematician and chemist and could always tell me the equivalent inches to metric without looking it up.

All was happening at a time when he began deteriorating more quickly in many other ways and his decline was becoming much more noticeable. Even his body could not regulate his temperature, and at times his blood pressure seemed less controlled by his meds. He was also susceptible to sudden blood pressure drop when he stood up.

It all seemed really strange and unrelated at the time, but I think now it must relate to where the tau tangles were in the brain and causing damage or loss of ability to function.

Hugs

Jen xxx

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Jen

That is what happened to my husband with books! He loved to read but I noticed as I was handing him his book he didn't seem to have moved on. I asked him if he was really reading or was he just pretending? Clear as a bell he said : "pretending". I left him with his book and came down and broke my heart.

Marie x x

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Yes. That happened with Chris. It broke my heart too as he read so voraciously.

X

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Jean

How are you? Haven't said hello to you for ages now. I do see your posts though and I always feel good to know that you are still typing away! You give such good advice to people too, keep up the good work.

Poor Chris. Just like my husband who went through so many books each week. There are so many cruel aspects to these conditions it's hard to say which is the worst? I suppose getting them in the first place is the worst thing that can happen?

Did you go to Yorkshire this year? I have a vague idea you said you were going but I might be wrong?

Hugs to you.

Marie x x

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I'm surviving. How are you ?

Yes I go to Yorkshire quite a bit as I have family there and a home. It's a mixed blessing as I am reminded of Chris all the time.

All the best things in life reminds me of Chris.

Not looking forward to Christmas.

Jean xx

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Dear Jean

A big hug to you. I know how that feels too. I am very up and down. Keep thinking I am sorting myself out then come down with a bump!

I am dreading Christmas. I used to love it once upon a time. I don't even know if I will be with my son or alone. I think he has a new lady in his life so that might mean even if he eats with me he will leave early.

I might see my daughter for about 30minutes if I am lucky but she will be seeing her partner's family no doubt. Never thought I would end up alone at Christmas but it is possible this year!

Marie x x

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Maybe one of these years..a Christmas cruise for PSP/CBD widows (& widowers)...??

Anne G.

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Anne sounds good but what about people like me who are not good sailors? I am fine on a plane though! Guess a cruise might be cheaper in the long run though? Anyway you will have to organise it! Lol.

Marie x

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Where do Brits like to go to be warm at C'mas?? Mexico usually, over here....

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Well a lot from here seem to like Mexico too or the Canary Islands or Barbados. To be honest I think a lot of people stay here because we are lucky and don't usually get extremes of weather.

Plus the way things are going I think people are trying to save their money! We have a deal with the EU or maybe not! Makes for a great deal of uncertainty here at the moment. Tonight there is a deal but tomorrow we may not have one! Makes for a worrying life for a lot of people.

Marie x x

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Yes, I saw it on the news - Good luck!!

Xx. A.

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Just a thought. How about a cruise down the Rhine? It is fresh water so doesn't have wave movement like the sea. Would be interested! Have lots to at the moment, tho!

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Not being able to read was one of Bens greatest losses and one that really did affect his life as it was the one thing that he was really able to enjoy. A kindle worked for a while as he was able to magnify text but he eventually lost the ability to read and just sat pretending for a while. He soon after that lost the ability to make himself understood although he knew exactly what he was saying. I found this the most difficult aspect of the disease. I still feel very bitter for what PSP took away from us when he was on the verge of retirement.

Kate xxxx

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Jen, Oh my gosh! This is the first time I’ve heard about blood pressure dropping when standing up. 18 years ago my husband past out and broke his leg due to blood pressure issues. The doctors diagnosed him with vasovago syncope and put him on blood pressure medication. Then 5 years later he past out again only this time he broke his neck! He has a fusion from C3-C6. To put in in perspective, Christopher Reeves neck injury was at C2. Anyway, it’s a miracle that my husband could still walk, talk, eat, everything! Now here we are with CBD diagnosis and the doctor doesn’t think the neck injury is related. I’m going to ask about blood pressure. Maybe he has had this disease since the year 2000? Not that it really matters but it sure makes me wonder. The fainting episodes never really went away. Crazy right?

Thank you for posting. I have more questions for our next doctors visit coming up in a couple of weeks.

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Low BP on getting up seems very common. My son, aged 42, suffers from it and also has diabetes. He is fit, but had recently had tests on his heart which show a slight constriction in an artery. I feel it is important to get regular health checks (WOF) as you get older. That way you have a good timeline on your health.

When hubby had his low BP episodes, he was in hospital, and 1of the checks was to measure blood pressure on standing. So he never fell at this time. When it was discovered, they removed all BP meds, saying low BP was more dangerous than his high BP as he could break something.

Have also heard of anaesthetics sometimes affecting the brain's equilibrium and subsequent CBD or other dementia occurring. My hubby had a couple of small investigative surgeries with anaesthetic before the possible onset of CBD, around 2012.

Will never know what set it in motion but it seems to slot into the timeframe.

Use the search button on this site. It will show other threads and you may find some will lead to research papers on these topics of interest.

Hugs

Jen xxx

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Hi demlac!

Serious difficulties in speech, reaching to emit only noises, difficulties swallowing arriving at episodes of quasi-drowning are typical of diseases grouped under the name of PSP.

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 private mail I send you our particular experiences on PSP-RS that we hope you can find useful.

Hug and luck.

Luis

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Speech and executive thinking skills are the first things my husband lost. This continues to be our biggest challenge. Now he does not communicate at all. No thumbs up, eye blinking etc. Doctors say his thinking process is OK, but slow. I have been told that the part of the brain effected can vary for each patient , thus creating different symptoms and progression of the disease. On occasion someone will tease him or bring up memories and he will smile a little.

His life is not fun and I know he must be sad. The kids (adults) find it hard to sit with him, as it seems like he’s not there. The blank look that accompanies these diseases is awful.

Oddly, when Dan would say a word or two , although his voice was not as loud as usual, his words were clear and understandable. It was one common word like Hello or a word the kids asked him to repeat. I commiserate with you. The loss of communication is heartbreaking .

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Well she who thinks she must be obeyed has just about lost her speech, but just keep talking and you will find some response. It may be a facial or body movement but it is worth the effort when you find a response. The superior smile is the best put down ever.

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Your a funny smart arse!!

:-)

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She makes loving advances just like that.

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Demlac,

Yes, my wife slowly lost her speech. It started as getting quieter, then loss of word retention, and finally unable to speak. This was extremely upsetting for her because she loved to talk. She also lost the control of her hands so could not type or write. I would write her emails for her, in her voice, so many of her friends didnt know she had difficulty.

In her last days, the hospice nurse asked her if she was afraid. She clearly shook her head no. She was assured of her personal relationship with God and had no fear.

I wish you strength. I despise this disease.

Bobby

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My mom hasn't been able to speak understandably for almost a year. Her vision is now almost gone too so her writing is pretty bad.

She wants us to give her morphine starting Friday am so she can just go to sleep and not wake up. She's 82 and ready to go.

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Hi, how long has he been diagnosed, my husband was two years in from diagnosis until his speech and communication became a major issue. For the last year and a half his speech really started to decline, along with his swallow. We tried everything to aid communication but it was never with great success, his hands were very contorted for the last six months of his life so thumbs up or down wasn't possible, we never really found a way to get round this issue. PSP and its ugly cousins have a lot to answer for!

Kate xxx

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Hi he’s only been officially diagnosed for a year,even when that came through the Neurologist didn’t believe it!!

Symptoms since end of 2015!!!

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Hello. My husband (CBD) has gradually been losing speech, but he is still able to communicate adequately. His memory issues account for some of the change-- he can't remember words he used to know and so talks less. Also, the volume of speech is greatly diminished -- hard to hear him, sometimes, as output demands things that his body just can't deliver (vocal cords, air support from breath).

Marilyn

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My husbands speech gradually went , cauldnt really understand he so he would say grumpily forget it, came out clearly , also we were in bank in the summer changing address on accounts he had a drink in his hand my daughter tried to take k it away from him and the words came out really clearly , sod off.he was always naughty when we went into Chichester we put it down to cobbles on the street, When he was taken into hospital they said to be prepared for worse , he was on oxygen and had antibiotics and for a few days he cauld speak much clearer which gave us im afraid false hope .

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Hello curious this is marg52 yes I have been noticing that with my husband, he no longer can write feeding himself is getting worse each day. He speaks very little these days also. My prayers are with you. We are here for each other.

Marg

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Marg

It is so difficult. I hope you have help? God bless you both. Thinking of you.

Marie x x

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Hi unfortunately another dreaded symptom of psp, my brother is there to he hasn’t talked for a long time, used everything we could think of to help communicate with him a lot of it did work for a while been using thumbs up or thumbs down last month or so, he can’t do that anymore either, life is ending for him, he has all the symptoms of that to, so bittersweet you don’t want to lose them , but being in Jesus arms is better than the suffering from this hell on earth the dreaded psp. Nettie

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Hi, I've never been involved in forums but I feel I need to here... My husband has very gradually lost his speech too; it's really painful and I feel for you both. Lipreading worked at first and now a big mix of fingerspelling and BSL or Makaton and text-to-speech programmes on a tablet are our sanity savers.

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Hi Glace; I've heard of sign language of course (here in Canada we use ASL - you use BSL) - but I'd never heard of Makaton, and never thought of sign language while my hubby was suffering language loss. It may be worth a separate post just notifying the Community here, of what Makaton is..?? Just a thought....

Hugs,

Anne G.

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