Sudden Change

[Millidog]

Hi All, Has anyone experienced a massive sudden change (overnight)in their loved one with PSP and may be able to offer any ideas and advice. My husband went to bed on Saturday night after a good day....(our normal=he needs full help daily for showering, dressing, and mobilising and has become quieter and slower in responding, is in level 1 thickener and struggles swallowing tablets but can eat most food cut up with his fingers messily but ok or helped with spoon)...It was his birthday, we had a relaxed lunch out with finger food, used wheelchair, no alcohol, relaxed evening with cheese and biscuits yes he can eat hard food better than sticky soft food supper and bedtime routine all ok with assistance. He had a peaceful night yet on waking we found him in what can only be described as a catatonic state - he couldn't focus, speak, open his mouth or move and was very rigid and somewhat feverish. We of course called 111 who called paramedics and he was taken to hospital with suspected infection. Fast forward to today he's still in the High Care ward of A&E waiting on a ward bed hes had head scan and chest scan, is on fluids, antibiotics, potassium and monitoring of vital signs , blood oxygen is variable but they aren't really finding any obvious infection. He doesn't look well, seens hot, can speak a little and can move arms and feet a very small amount. He doesn't seem in a good state to come home but I do worry that he could get sucked into a system where knowledge of psp is lacking and time spent lying in bed being assessed by different staff acting differently to advice of our neurolgist or regular salt and ot etc (that are hard to get to speak to) may be detrimental to his improvement from current state and against his wishes to be at home. I suppose I'm asking two questions 1. Has anyone experienced some form of hospital admission similar and do you have any advice of how I may best handle it and support my husband and 2. How likely is it to be a massive deterioration of PSP? I liken psp to going downstairs 1 or 2 steps at a time yet this was like a full flight of stairs overnight.

Any help advice and guidance would be most welcome. Thank you

[Sun-flowerwearer]

Hey, rarely comment now but I saw your post and just wanted to send love. I saw many massive changes from one hour to the next. My husband often went into these catatonic states but usually came out of them within the hour … but was also very locked in as a normal state. It’s an incredibly worrying time when they go into hospital but hopefully if he stays on the same ward the regular staff will be educated by you and their colleagues and look after him. I used to go in to the hospital around 8am and just sit with Stan and observe, make sure I was there for the doctors round in the morning and stay until about 2pm then go home…but I talked to the staff a lot about his care. I took Stan home asap as we can care for them better at home as long as they don’t need IV fluids .. the DNs can come to you to do stats. You have CHC funding so I’d push for coming home and just be around 24/7 between you and the carers. It’s worrying and stressful either way for you but will mean so much more to your husband to be with you at home.

[Bergenser]

Dear Millidog

Sending massive virtual hugs. It's so hard to watch your loved one suddenly getting so much worse.

Infections can have a huge impact and it's important to get the treatment quickly, but I recognise the concerns that the hospital cannot care for him the way you do at home.

I agree with Sun-flowerwearer - try to get him home as quickly as possible if the necessary scans etc have been done. Check if there is a "virtual hospital" team in your area that would coordinate monitoring and treatments (including IV antibiotics and oxygen if needed).

Hold on to the memories of his birthday, it sounds like he had a perfect day and he may have been making an big effort to enjoy it fully.

I hope you get him home and well very soon 🌻🫂

[Zerachiel]

Hi, to add to what others have already said, I can confirm that I gave also seen a sudden change in PSP symptoms with my wife.

From my experience it happens when the body is under stress or trauma but as the underlying issue is addressed the PSP symptoms start to revert back, it can take a long time (my wife's incontinence at night started to improve a year after it started due to an infection). I noticed that after each of these episodes she never fully got back to where she was and we had a new baseline for her.

To list a couple of events...

COVID caused here to stop being able to chew/eat solids overnight and her balance completely went.

A fall breaking her hip and clavicle resulted in the next morning in hospital she become totally unresponsive for over an hour, this happened regularly but became less frequent as the week went on.

It does sound as if your husband has an infection, especially with Oxygen levels varying but hopefully when they get to the bottom of the cause he will start to get back some of the control what has been lost.

Best wishes to you both 🫂

[DebHep]

Hi - so sorry to hear about your husband. Agree with everything above - just one other idea that may help do you have dedicated Parkinsons Nurses fir check ups etc ours are really helpful if we have any queries we can ring - perhaps reach out to them for advice on what it could be & if they are based at the same hospital they could perhaps advise his current care team on treatment options.Hope he is on the road to some level of recovery soon. X

[Birdbag]

oh Millidog I’m sorry. But if this situation is like my husband’s yours will climb back up at least half that flight, but it takes time. My husband was just like that in October. No obvious infection ie no other symptoms and I think it was eventually put down to aspirational pneumonia although no one seemed sure. Took 2 sets of antibiotics, fights to keep him hydrated and 10 weeks with frequent physio once strong enough to return to ‘normal’. We didn’t get sent to hospital and GP and hospice (post facto) seemed surprised he had recovered from the same catatonic state you describe. He had to learn to walk again. So don’t give up yet but be prepared for some very hard weeks. I had to increase care levels and, as he couldn’t take his own weight, we were given a Sara steady which was a godsend for transfers between bed and chair.

[rg13rg]

hi.

We had this with my mum last year. I was on holiday and managing it at a distance but she was catatonic and unable to move unaided- from a baseline of being mobile at the time.

Having done every infection text they could, which was the primary thought, nothing showed up.

I later discovered she had been really stressed about a little thing (but important to her). That stress seemed to trigger fatigue in the extreme.

We had to up the care provision (and get a stairlift) to get her home but she recovered not quite to where she had been before within 2 weeks or so.

From what I’ve read and from my experience, although PSP does come on rapidly, a sudden downturn is usually related to something acute.

Good luck.

[Wombatz]

It's very hard to give advice as every sufferer seems to be different. My wife has been suffering full body tremors for over 9 months. Initially with sedation they would clear in 36 hours. However this went to 3 days.

Then Boxing Day they started and continued until New Year's Eve. We got to a position one evening that we couldn't wake her. Ambulance staff managed this but we held with the Respect Form wishes and she stayed at home. GP home visit next day found a chest infection but not considered tied in with tremors. The hospice took over and provided nurses and carers.

My wife couldn't speak, walk, and hardly opened her eyes. Blood tests revealed nothing.

All I can say is try to get him out of hospital as soon as possible. My wife was in hospital last year for nearly three months in retrospect it was a big mistake.