My husband woke up almost two weeks ago and isn't speaking anymore.
Has this happened suddenly with any of you?
Suddenly nonverbal: My husband woke up... - PSP Association
Suddenly nonverbal
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-shelly26-
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Yes. It did with my husband. When he was still speaking a bit I asked him why he hadn’t answered my question. He said he had in his head but it didn’t come out when he spoke. Your husband probably is still speaking to you in his head. Can he communicate in any other way? We got by for a long time with thumbs up and down for yes and no. He was still able to make decisions until he died by me asking him yes/no questions. I felt it important to speak to him as I would have normally so he felt part of the household still and would ask him to make decisions, which food, drink he wanted, where he wanted to visit, what clothes he wanted to wear (although before PSP he would ask me what he should wear). Very occasionally he would speak clearly, months after silence. I asked him once if I should have a tattoo when my daughter in law got hers and he surprised me with a very clear ”No”. He did his funny humming laugh when he saw the expression on my face at hearing him.
I hope you get to hear your husband again and if not hope he can communicate in other ways.
XxxX
Yes, he used to do that too. He would think he answered me. Some days he will give me eye contact and squeeze my hand to say yes. Other days are not that lucky
I can relate to so many of the posts in this forum. My husband just turned 39 so the doctor will not diagnose him but step by step he has gone through every symptom of this. From the mood swings, falling backwards, crazy spells of laughter and crying, anger, mobility issues, balance issues, etc. He hasn't been able to work or drive since 2015. He went from happy, strong and resilient to having to be pushed in a wheelchair within a matter of months.
I feel so alone. He sometimes can't swallow his pills. His face is mostly expressionless now. He doesn't act like he hears me-just stares straight ahead. Some days are better than others. He can't nod or shake his head and his texting is mostly unreadable. Understanding him when he tries to communicate is like a horrible game of charades
He mimed that it hurts to look down and up. Makes him very sick and he doesn't seem to be able to look to the side very well. He mostly just stares. Hardly even blinks
Hi Shelly
It's horrible to see our loved ones slipping away like this.
His nausea is likely vertigo. That happens as the brain can no longer access the signals from the middle ear. It constantly searches for orientation, but no signals come. In most cases, our neurologist tells us, it passes in time. Some folk use scopolamine patches. As an old sailor I would say the drowsiness they can cause is not so good. You might wan't to talk to his doctor about that.
Just remember that though he can't speak he is in there and his mind is still working.
He feels the same love for you he ever did.
Reach out and re-assure him. Hold him and tell him that though he can't communicate you understand the nightmare he is going through.
It must feel like you are alone. I understand that. You are not. You have a great burden now of being his voice for him. He is still there for you.
We are here for you too.
It's hard.
Warmly
Kevin
Thank you Kevin 💜
Dear Shelly,
I read your first post as I didn't know your history, and I'm very interested in what people have to say about speech loss: this happened as a very early symptom with my husband (CBD). You joined in 2017 before I did.
Oh my gosh! what a heartbreakingly difficult time you have had, at such an early age - both of you! I just felt gutted reading that post string - Did you ever get to Mayo, or did OHSU ever give you a diagnosis? It doesn't sound like it - you must feel like you're wandering in the wilderness?
All of what you describe sounds like a CBD patient, or a PSP patient with possibly some greater FrontoTemporalDementia-type symptoms. We have an educated and experienced member here (Robin Riddle from the Bay area of CA, who set up the Brain Support Network) who always says "hallucinations or psychosis is not a part of PSP". We also know that neurologists have a hard time differentiating between PSP, MSA, CBD, FTD and others, at times. Who knows if there isn't such a thing as a crossover/variant of two or more of these diseases ie PSP with FTD?? The speech loss seems to be a very common symptom of both PSP and CBD. (I don't know about FTD) My husband suffered what I think is his initial loss, quite suddenly - yet he's been very gradual in subsequent loss since then. Everyone can be different.
Although the lack of a clear diagnosis is a thorn, Your hubby sounds so much like one of our neurodegenerative-umbrella-family that it almost doesn't matter which disease he has. You are just like us: not having any medication that will cure: only some that will help with some symptoms - riding out the storm - handling the sudden step-downs of symptoms with whatever care and support you can give your husband; knowing you're on a downward slope - every step down is a step closer to the end... Give him love and care: What else can we do?
Let us know how your communication efforts go: we'll be looking for your posts with interest 
XXX
Anne G.
Thank you Anne. I think his hallucinations may have been a med side effect, but he also had Lymes and heavy medical toxicity that he's been being treated for during the past year. Our neurologist wants to say."Can't speak? That's psychological."
But our doctor is only running tests because I went down the PSP checklist with him and he said, "But there are no diagnostic tests so I can't rule it out."
Mayo sent us to OHSU and he was diagnosed with Dercums Disease because he had deep tissue lipomas that send nerve pain through his body.
Poor guy. 
I think the multiple issues have made it difficult to diagnose. Thank you for your encouragement.
But Mayo was very disappointing and although they said we would see a movement specialist, we didn't. I am frustrated with doctors.
Boy, I can sure see why! Did he ever get an MRI? The neurologists tend to look for "the hummingbird sign" as a strong indicator of PSP...
Dercums? I'll have to look it up - another one we haven't heard of!!
...Tiring to be unique isn't it?
Hugs for strength and patience XXX
Anne G.
Thank you. Dercums is an adipose disorder. (Painful deep tissue lipomas.) The symptoms can mimic MS and people with it sometimes have seizures and fibromyalgia, but it does not cause all this other stuff.
Your husband has (per your posts)
falls including falling backwards
gait freezing
gaze rigidity
loss of language
mental/mood/FT symptoms (which you said may be medication related)
All of the above are common with PSP and most with CBD.
....I didn't see any mention of any of these in the summaries I read on Dercums Disease. No blinking wonder you are frustrated!!
Yes. It's been a rough ride. Now his neck is hurting a lot. It's very tender. He has an EEG tomorrow for the loss of speech.
And when we help him to the room, he walks like he's drunk. He has major equilibrium issues. Not so much the gait freezes. He stands with his back arched back, looking at the ceiling quite often and it's hard to keep him from falling back. And he doesn't wait for help. He spontaneously flops off the couch onto his face and cannot even turn his head to the side or move his arms or legs. He just has decided he needs to do the dishes, or work in the yard or get to the toilet. But being speechless, if we don't hear the bang or thud, we have no idea he's lying there.
I'm sympathetic to that too... I finally got a "Lifeline" (like medicalert) fall-detection pendant for hubby to wear. It helps....
Does it beep or how does it work?
Its a pendant on a cord that detects falls and also has a button for voluntary summoning (of the service). Its wirelessly connected to a unit that plugs into our telephone landline. When activated it summons a 24-hr attendant who has all hubby's essential info and can speak 2-way through a speaker in the unit to see if hubby is conscious or speak with me if I'm present. If I'm not present, they have a list of 3 nearby contacts (neighbors) to whom Ive given coded access to the house who can check out the situation and communicate through the speaker to the attendant. The attendant can/will call the non-emergency fire dept for lift assist, or the paramedics as appropriate. If hubby doesnt respond and no neighbors are available, the attendant automatically calls the paramedics.
The service is subsidized by my local health aurhority (Canada) so I only pay $40/mo. Its worth it to be able to spend an afternoon with a friend now and then
Anne G.
I'm glad you found this. It's better than strapping him with bells. Lol
I need to look into this.
Interesting post Ann. When we saw the Parkinsons's nurse recently I asked exactly the question as to whether there could be a crossover of 2 or more diseases, especially as my husband, diagnosed with PSP, has had hallucinations for the last 3 years and long before he was on any medication. She felt it was unlikely but even if it were the case it would make no difference to treatment etc as obviously there are currently no disease modifying drugs for any of this family of neuro degenerative disorders. I firmly believe that the experts just do not know but somewhere down the line things will become a lot clearer. I suspect that there could most definitely be a cross-over or perhaps because there is not a one size fits all progression for these diseases there will always be a handful of people that will display symptoms that are not normally expected to be seen say in PSP, in my husband's case the hallucinations, usually animals and children. It still surprises me that whatever site you go on researching PSP the symptoms are always generic, often listing falls as an early symptom, that certainly was not the case for us. Hey ho, onwards and upwards. Patio doors are open and the birds are in full song, a few moments to enjoy before the challenges of the day. Kevin's gin making shed sounds very appealing at the moment, I can supply the tonic, ice and lemon.
HilsandR
I felt that I should reply about crossover diseases. It's been awhile, but I'm pretty certain that I remember someone on Janet Edmundsen's CurePSP webinar reporting that on his wife's brain autopsy they found at least 2 of the 4 most often mentioned diseases. I know one was PSP, but can't remember the other. I'm so glad that my husband has chosen brain donation because, though it will make no difference in his case, it will be nice to know what we've been dealing with for certain. Plus, while my husband clearly suffers from PSP, I've always wondered about MSA in his case even though the MDS says no. Time will tell.
Pat
Thanks for taking the time to reply, Pat. That's interesting re the brain autopsy picking up more than one of the diseases and just reinforces what us carers already suspect. In our case my husband exhibits many of the symptoms of Lewybody dementia, especially the hallucinations and REM sleep disorder before he showed signs of any other symptoms. Our GP, once he finally agreed there was a problem, mentioned Lewybody but that was dismissed by the neurologist because the MRI scan showed the hummingbird sign, which usually points to PSP. That said, all his reports back to our GP state 'probable PSP' because there is no single test that can give. 100% diagnosis, which begs the question, how can any future treatment be successful if there are 2 maybe 3 other things going on? Perhaps this is why trials so far have failed - maybe one day all will become clear - we can only hope.
HilsandR, I agree. It's the main reason that I feel so strongly about brain donation. Hopefully, it will help them to better understand these diseases. I don't feel like they can effectively look for a cure until they can identify a cause. I feel like any cure is a long way off at this point. I wish that wasn't the case, but fear that it is.
Pat
I have thought Eric might have dementia too at times. He will ask me something and 20 minutes later ask the same thing. He has no memory of it. I will come home, kiss him and we have talked for 20 minutes. Then I have gone in the kitchen and he will suddenly ask, "When did you get home? Why didn't you tell me you were here?"
It doesn't happen all the time but it always worries me.
Hi Shelly26, I just want someone to push the stop button on this emotional rollercoaster, so much worry, anxiety and not to mention the grieving for the person I have lost although he is still here. That said it does have its amusing moments. Every so often my husband tells me, when I am helping him to shower, that he prefers me to the other woman that comes. There is no other woman, I currently do all the caring. It does make me smile. Our son often says to him, "look out, Matron is doing the rounds" so I suspect he prefers the other woman to the one who wears her bossy hat! I do savour the lighter moments. HilsandR
I absolutely agree with you. There is more grief in letting go of the person they were, and the things we did together, and any little funny thing is the best. We sat watching a show on Netflix, and there is this woman who says the most random things. I looked over at my husband and he was grinning and laughing silently. It filled me up. I love his smile. I see it less and less, so I treasure whatever I can.
Are you in the US?
Hi Shelly26, we are in the UK, in Surrey. My husband had a great sense of humour and always kept everyone entertained. That went a long time ago but every now and the then he will come out with a one-liner that always leaves everyone looking at each other cos they don't expect it. That never fails to choke me up but does prove that no matter what PSP takes away from them, they are definitely still there. I am meeting some friends for lunch today so looking forward to a good chat with them. Enjoy your day. HilsandR
Of course, this we before he stopped talking.
❤ My heart goes out to you
I agree Hils..particularly with Kevin's shed!. Do you remember Ratcliffe's idea of a "Show us your wet rooms" tour? Maybe we can add garden sheds to the tour, lol ✌❤ 🍸
Haha, you make me smile. We took Eric to a holistic doctor and she treated him for Lymes, Bartonella, Cadmium metal exposure, heavy pesticides, toxic mold exposure, and yeasts. Oh and parasites. The hallucinations stopped. He had this horrible rash all over his face and that has cleared. And he hasn't had as many seizures. They are more like tremors after being startled, but they last a couple minutes. He is still being treated for heavy chemical exposure.
Shelly, What an alarming development, and all these things moving so fast. Do you have any non-medical Parkinson's groups or other support for you? My husband has an atypical Parkinson's, maybe CBD, and the actual people--here on the this group, and in a local Parkinson's meeting, and now at the Parkinson's gym--always have better practical advice than the doctors. Maybe a caregivers' meeting? I feel for you.
Lost
Nobody. No doctor support, no groups because he doesn't fit any quite perfectly. I know of nothing locally.
Yes. This happened to my wife three years ago. We can still communicate even though it is only through facial expressions, smiles, raised eyebrows etc. Thank you for raising this, the large number of responses show that we are not alone in this and needn't feel guilty that it is our fault and not the disease.
❤
It's so tough isn't it? Can she type? Are you able to understand he gestures better?
Sorry I hadn't noticed your reply. She can't type her right arm is an alien limb as a result of CBD.
She is a wonderful patient and can still express her feelings through facial expressions. I just do my best for her and her face assures me I'm doing ok.
❤
So sorry to hear this - is he taking sinemet? That may help in talking/swallowing
Has he been tested for NPH (normal pressure hydrocephalus)? That's not really dementia but its procedure removes the symptoms almost immediately
They use a lumbar puncture to test for it but if it's not NPH and PSP/CBD, it will take him down a stage almost immediately
We didn't know for our dad and his LP made his condition worse so I would recommend strongly against it if PSP/CBD is confirmed
He hasn't. They get him in and out of the office faster than a rabbit on a skateboard. Everyone pawns him off and there is no one that really wants to help. They do medchecks.
Actually his first lumbar puncture took him from walking, and still getting around, to needing a wheelchair and not being able to sit up anymore, overnight. It was almost an instant change. They inserted the needle and no he started convulsions and was sweating so profusely he got the floor wet. I think they damaged his spinal cord in the process. The doctor who did the rest said he had never seen that happen.
That's so heartbreaking... My dad underwent something similar and I still feel like I made a mistake, though I know I wished the best for him
I hope/wish peace and comfort for yourself and your husband
I am sorry, I thought only doctors here in Pakistan were uncaring - sinemet helps some patients, it doesn't help others - but it had some side effects like bad leg spasms... But it should be started in tiny doses to see if it causes any positive improvement and that could help
Lumbar puncture ( spinal tap) is very painful and distressful to the patient and it makes the patient even worse so it should be tried only and only if it's confirmed the patient has NPH ( normal pressure hydrocephalus) and not PSP/CBD
I would recommend going in with his doctor the next time and talk to him - it was a struggle for us too...
Thank you. 💙
Sorry to ear.
Not in our case after 6 and a half years with PSP.
But symptoms of PSP are not the same for all patients.
Hugs.
Luis
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