My Husband was diagnosed with PSP in October 2022, following two misdiagnoses.
One morning, 4 months ago, I found him totally unresponsive when I tried to wake him, I called an ambulance and the paramedics found the same despite doing their routine checks.
After approximately one hour he just woke up and was surprised to find that he was about to be taken to hospital. As all initial tests were fine he didn’t go to hospital and was seen by a GP and 4 weeks later in his neuro clinic. We were given an explanation that this may have been an episode of hypoactive delirium and although all tests for infection came back negative it was suggested the cause could be environmental.
At the time of the episode my husband had moved upstairs temporarily while his downstairs ensuite had adaptations made. Therefore he had spent two weeks in a different bedroom where the layout and ensuite was alien to him.
Since this episode, he has had no further episodes of being unresponsive, however has had two periods of appearing spaced out, lost his mobility and coordination both lasting a few days. These episodes followed attending a hospital appointment and going to visit family briefly on Christmas Day. Although at the time he appeared to cope well, it was the following days that we noticed these changes and again no infection was diagnosed. Talking with his GP and specialist Parkinson’s nurse we can only conclude his brain was unable to process the changes in routine resulting in these episodes.
I will be interested to hear if anybody else has experienced anything similar, or is this just another stage of PSP.
Sorry about the long post. Thank you in advance
Lynn
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Bertieandpiper
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Hi I've witnessed similar with my husband earlier last year, both times when friends visited and he went out. The first time he suddenly frozen and zoned out, couldn't focus, didn't appear to hear, couldn't move and lost all ability to weight bear, the second we were out and he suddenly zoned out,couldn't respond and listed heavily to one side, without support from us all he would have collapsed. Both times i think he did too much, afterwards he was very tired for a day or so and seemed OK after but it's difficult to judge as there has been considerable deterioration especially in mobility in the months since. We have had smaller episodes of similar zoning out unprovoked by specific activity and I think neuro changes and fatigue place a large part in this. When I looked into it more and spoke with our neuro nurse she indicated it was quite common her experience of psp. Best wishes Millidog
Hi I've witnessed similar with my husband earlier last year, both times when friends visited and he went out. The first time he suddenly frozen and zoned out, couldn't focus, didn't appear to hear, couldn't move and lost all ability to weight bear, the second we were out and he suddenly zoned out,couldn't respond and listed heavily to one side, without support from us all he would have collapsed. Both times i think he did too much, afterwards he was very tired for a day or so and seemed OK after but it's difficult to judge as there has been considerable deterioration especially in mobility in the months since. We have had smaller episodes of similar zoning out unprovoked by specific activity and I think neuro changes and fatigue place a large part in this. When I looked into it more and spoke with our neuro nurse she indicated it was quite common her experience of psp. Best wishes Millidog
Thank you for your reply. I think we are just discovering another awful symptom of PSP. He was fine yesterday but again today became zoned out and couldn’t weight bear and has since been very tired. So maybe a frequent occurance.
Hello, My wife does this when under stress, first few times was when she had pneumonia and I related it to that but it happened again when in hospital after a fall.
They also checked for Hypoactive delirium but when we spoke to her neurologist he just said it's PSP and he had seen it before.
Thank you for your reply. At the neuro clinic the dr said hypoactive delirium, despite negative infection markers and the specialist nurse said just PSP. He has had another brief episode today and has been fine for the past few days so I am guessing it’s just another part of PSP.
When my wife last had it happen she had a few over a couple of days ranging from 10 minutes to a couple of hours long, we noted at the time her blood pressure did start to drop whilst unresponsive. It is worth getting a blood pressure monitor and finger Oxygen saturation monitor to keep an eye on him, make sure you know what they normally are for comparison.
Thank you Zerachiel for your reply. His BP hasn’t dropped unduly low during the episodes and his O2 sats were normal when the paramedics and GP have visited and this is what was puzzling them because everything was normal. However, I will certainly keep a closer eye on his BP. Best wishes
My mum had this a few times with no obvious trigger. The first time was very scary, she lost all mobility and speech then slept for a few hours and woke up asking for a latte!
The other few times weren’t for very long and she always slowly came round. The GP and Parkinsons nurse put it down to PSP.
Thank you for your reply. It was certainly scary, him being totally unresponsive but then waking as if nothing had happened! He has had another episode today of being zoned out, unable to weight bear and then very tired. So I’m guessing it could be a regular occurrence of PSP. Best wishes
I wrote about this somewhat recently, but my husband had an episode sort of similar: he called me that something was happening, and by the time I arrived 15 minutes later, he couldn't even lift his phone and was losing the ability to even move his lips. He was freaking out on the inside that he was losing the ability to move forever. I tried to get him to the car to take him to the hospital, but he couldn't really stand or support his own weight--he was like dead weight.
What it turned out to be in his case was his body's inability to process a medication that he'd been taking for 7 or 8 days. It was just normal antibiotics, but two at once, and both used the CYP 3A4 metabolic pathway.
There were a handful of other episodes that were similar, but none as severe, I'm guessing because the GI doctor had him on both medications at the same time. And it's so hard to pin down, because it took a whole week for the problem to show up! It was terrifying, but such a relief to know what medications to watch out for.
Thank you for your reply. That was certainly scary for you but as you said you know what to look out for should he need other medications in the future. My husband has had no other meds but I will also be vigilant to any affects should he need them in the future. Everything for him just points to environmental factors, and yesterday he was very zoned out and could not weight bear and had been fine the day before with no changes in routine . I think this must be the progression of this awful disease. Best wishes.
He is in his seventies and we have been through the misdiagnosis of Alzheimer's and Parkinson’s since 2020, before the neurologists decided in 2022 it was PSP.
Oh Lynn, These episodes are really scary, and you can't tell where to go. I seem fortunate: aged 82 male,, PSP diag 5 yrs ago, and very wobbly balance, lack of energy, double vision, etc, and still able to function - but would be lost without my pARTner! Regime of diet (near veggy), supplement, targeted exercise, therapy all have helped. Have made 7 page info and advice summary. Welcome to share, as u may find some useful suggestions - but need ur email address., if u wish me to share. Verey best wishes to the 2 of you. TimbowPSP
Hi just a thought. My mum had similar episodes that usually lasted 3-4 hours but sometimes were longer and they turned out to be epilepsy. She's had no further episodes since starting on an anticonvulsant but had these episodes over an 18 month period before anyone suggested Epilepsy
A seizure was my first thought when he wouldn’t wake up as this is how my dad was post fit with epilepsy. Nobody seemed to agree and the involuntary jerky movements he has occasionally during these other zoning out episodes they just put down as usual to the PSP. I am keeping a record anyway.
That is interesting, my mother (who had MS for around 30 years), developed epilepsy towards the end of her life, with mostly "silent" seizures. She would be exhausted after each episode, but apart from when they had her under observation in a neuro intensive care unit, the seizures went unnoticed by care staff. Only my Dad consistently noticed the pattern. The main neurologist believed the epilepsy was a symptom of the cumulative damage to her brain after all the years of MS.
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He said, "I'm dying today."
What are the odds?
Husband Recently diagnosed with PSP aged 41!
Feeling sad
