Abrupt regression after lengthy period of progress

All about caring
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I’m looking for folks who have had a similar experience. My wife had a stroke 2 years ago this month. Her progress, in speech and mobility has been very good until a couple weeks ago, when we had a very nice meal at a local restaurant. All seemed well (we had almost identical meals) but on Saturday morning, she was violently ill. This was a one time occurrence and it seemed to clear up any food poisoning. She has since regained her appetite and I only mention the episode because of what occurred (coincidentally or not) at the same time.

Abruptly, that Saturday morning, her mobility and balance have suddenly deteriorated. She’s gone from quite efficiently moving unaided to a condition I recall during the first stages of post stroke rehab: she’s spent a couple days in bed, but now, having got her on her feet, she moves from one steady object to the next or relies entirely on me for support until she reaches the next hand hold. This is a giant step backwards and I’ve waited a couple days hoping for some improvement, but so far, no joy. She blames her right (weak) side but cannot articulate exactly what is or isn’t happening there.

Her mood is quite positive most of the time and this is encouraging, but, as I may have mentioned before, she has always shunned physiotherapy and I worry that this is catching up with her.

I’ve taken her to our GP who knows her situation well and she is in the process of organising a CT or MRI scan for my wife, so medically, I think we’re doing all we can for the moment, but I wonder if there are stroke victims out there who have suffered similar abrupt setbacks and whether there is anything else I should be doing to support a recovery.

Thanks in advance for your thoughts

.

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Hi Steve, I’d say it’s nice to read you again but not under these circumstances.

Thoughts - disruption of the gut in anyway can affect the efficacy of medication, blood circulation, also hydration during food issues or sickness can also disrupt ‘circulation’. Also UTIs as a consequence of any diarrhea or food issues.
I’d suggest a urine/poo sample but also if she’s on antibiotics for anything that can be disruptive
NONE of this is medical advice just a few things we encountered with Dad on the v long journey

CT or MRI will be good to have in hand to see any issues - is there any breathlessness? Or is she pale
Haemaglobin test can see if she’s anaemic as an after effect. You can get an oximeter to check her oxygen intake…

Unfortunately, these unpredictable events can happen with no actual explanation it’s a weakened system and frailty.
I hope something I mentioned can help. Your GP sounds good so ask as many questions as YOU need to feel comfortable.
Did you do the cruise?? I hope you both enjoyed it!!

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Just to throw something different in the mix - it may not have been food poisoning or anything to do with the stroke. Inner ear infections affecting the vestibular system are very very common and can cause sickness, and severe problems with balance (and therefore mobility) until the brain has a chance to compensate and the infection recover. Reassuringly it does usually get better with time but obviously with co-existing conditions will complicate that. Just a thought. Take care x

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Hi Steve. Oh God this sounds SO like my husband Graham! His stroke was New Year '21 so a little longer than your wife.

His stroke, thankfully, didn’t cause to many speech problems and mobility was fairly good. He made good progress with walking and this got to the point where he would walk along the lane with a wheeled walker - a few hundred yards and back and on hospital visits he was mostly using a stick.

At the end of last year he started grabbed at the walls and furniture as he moved around and I am noticing more and more he hangs onto things when moving - otherwise he is VERY wobbly and unstable. Recently, he uses a stick AND wall/furniture and ‘launches’ himself across open spaces to grab something else.

He’s been referred to a specialist Neurologist at The Brain Centre in Bristol and they have run MRIs, CTs, X-Rays, blood tests but not found anything to explain it all. When we go there he has been in a wheelchair but last time managed with his wheeled walker.

I’ve noticed his speech sometimes gets a little slurry - but not something I would say is all the time. Aphasia is getting worse and it can be funny when he misuses words and I try to make light of it.

He is regularly complaining of his head spinning and feeling like he is going to black out. He HAS had a few blackouts and these seem to relate to sudden unexplained massive drops in blood pressure. He’s been treated for Postural Hypotension and is medicated for BP but these episodes usually happen when he is sitting still. No one can yet explain them. Last week BP went from ‘normal’ to 93/62 suddenly and took nearly two hours to restore.

Like you wife, G had Left Pontine Stroke and luckily he is left handed so the weakness in his right side doesn’t cause major issues. I’ve noticed he often does not use a knife at meal times (in his right hand) but he denies its because he cant hold it!

He did very well with physio to start with but has also gone backwards a lot. He’s had phone appointments with physio and we asked for the next one to be in person so she can re-assess him as he cannot manage the tiny exercises designed to help his Core Balance.

Like you I am at my wits end and when he said to me one day last week ‘please don’t leave me, I feel I am going to blackout and collapse’ I was very upset because he was scared.

My only suggestion would be to make notes of the symptoms your wife has and things YOU see which she may not be aware of (like Graham not picking up a knife in his right hand) and present those so GP is fully aware of what is happening at home, in case your wife doesn’t/can’t articulate it sufficiently. Graham always asks me to speak for him as he has some cognitive issues and can’t process things quickly enough for a routine Q&A session.

We WERE warned there would be setbacks and as my cousin, who is a GP, has suffered several strokes leaving her in a worse state than Graham, she has been open and honest with us about the possibility of further strokes or deterioration… Our GP is amazing but has admitted he has reached the end of what he can do and has referred to all the Consultants he can at present.

We too feel a bit lost so can empathise. Try to stay strong. It’s easy to say, isn’t it, and I now have tears flowing, so I do know where you are. :people_hugging: There’s support here mate.

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Hi Steve
My lovely late husband suffered strokes vascular dementia and other health issues.
When he had the scan after the main stroke, it showed he had several mini strokes that we weren’t really aware of. It could be ( and I hope not) that your wife has had a TIA which has caused a set back
My heart goes out to you. I have an idea of the emotions you feel

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Many thanks to Victoria_1806, Aliceunderground, chris_ 22081 and Pet66 for your replies and apologies for the blanket response here.

Elaine went in for her CT scan last week which revealed a subdural haematoma unrelated to her stroke two years ago. This was not a massive bleed and had apparently ceased, leaving some ‘old blood’ on the brain which may well have caused her sudden lack of mobility, balance and other symptoms. The neurosurgens did not feel surgery was necessary but recommended we cease her daily dosage of clopidogrel, a blood thinner which apparently can hinder the brain’s ability to repair the haematoma.

So far there’s been no appreciable recovery, but I am hopeful the brain can clear the haematoma and this may restore some mobility, balance, etc. I have no idea how long this process could take. Any ideas out there?

Our Christmas cruise was superb, Victoria and thanks for asking. Indeed, we’ve booked another to the Med in September so fingers are crossed for her recovery from this latest setback.

Thanks again to you all!

Steve

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Thanks for the update @Steve_2208 ! I’m so pleased that you managed to do the cruise and that you both enjoyed it…quality memory making I’m sure!

Gosh I’m glad the CT scan could determine what was going on. Sending some small prayers and thoughts over. I hope you’re managing ok, Steve let us know how you’re getting on. Mobility and balance issues can put us on edge. Hopefully, with the familiar surroundings of home Elaine’s able to get around without too many issues.
I’ve no direct experience of haematoma’s in the brain, dad had one from a fall on his side - it looked big and ugly turning all shades…
I wouldn’t like to suggest things because it all depends on how her cardiovascular health is etc. I’d say you know her best, having enough usual fluid intake and movement etc Everyone’s different
Take care of yourself too!
best wishes

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Hi Steve. Good to hear that you’ve booked another cruise and Elaine seems to enjoy them.

Graham’s balance and mobility are rubbish at the moment. I have posted on Roll Call that I need to have a long hard chat with him and start demanding he does the physio exercises otherwise he will just turn into a cabbage. He moans about things but won’t help himself and a good friend said he thinks G has ‘given up’ and just wants to moan and blame the stroke.

He needs the 121 Talking Therapy we have been promised but that seems to be slipping further away. I was told about 6 weeks ago it would be ‘a couple of months’ but what that exactly means is anyone’s guess. He has some long-standing issues he needs to shut off as he keeps ‘worrying’ at the like a dog with a bone and goes over and over the same things - despite the fact he cannot change anything, and it gets me quite annoyed when he starts venting at everyone he meets as if that will change the past! Oops - sorry I didn’t mean to have a moan then.

Anyway - best wishes to both of you and I hope Elain’s mobility and balance are improving. It’s such a worry that they will have a fall when they are like that!!