My dads had an occipital stroke

So I’ll begin by saying I’m new here and wanted to share this and ask for any advise or similar experiences.

12 years ago my dad had a stroke in his occipital lobe. It affected his eyes a little bit but was still in the normal range for driving etc. luckily that stroke wasn’t a bad one and he didn’t suffer too many side affects. Slight slurred speech which improved with speech therapy and was barely noticeable. Been on meds ever since. He had a heart attack in 2021 and had a stent fitted also. In the last 12 years he’s aged a lot - he’s 73 now but in the last few years he’s more agitated and forgetful. We were putting it down to old age and damage from old stroke but now we feel maybe other tias may have happened.

Anyway fast forward to September just gone. He came home from work one day (he’s a carpenter and yes was still working despite us saying it was time to retire) slumped in the chair saying how tired he was and fell asleep deeply right away. He woke a couple of hours later and couldn’t get himself up off the sofa for ages and was shouting about it. He then got his phone and didn’t know how to unlock it or how to use it. We thought this was really odd. The next day of course he took himself to work again, but couldn’t remember how to do basic tasks he’d been doing for 50+ years. Again odd. We’ve pleaded with him since then to see the gp but he wouldn’t go and got angry every time we suggested it. Finally a few weeks ago my mum who is a nurse got him an appointment and dragged him there and got him referred for an MRI which was booked for Dec 9th. We suspected either a tia or possibly early onset dementia. This whole time he didn’t go back to work I think because despite not wanting to get help he knew something was wrong.

Just over a week ago at 1.30am he woke up and threw up. He then went to sleep but when he woke at 6am couldn’t stand and couldn’t see. Ambulance was called and after ct turns out he had another stroke in his occipital lobe but much bigger this time. Doctor also said there’s historical damage to every lobe and thinks he’s had 3 maybe 4 strokes in total. So one in 2011, the September one, this one and another at some other point we didn’t know about somehow (or was a tia). He is very unsteady on his feet and cannot see anything.

It’s been 9 days now. They did an mri a few days ago which didn’t show much different to the ct. his stroke 12 years ago was on the right occipital lobe and cerrebellar, this stroke was on the left side of the occipital lobe and also the right over the top of the last one. All very rare. They also said he has some kind of damage to every lobe from old strokes. We think he had a stroke in September but any others we have no idea about. The doctor said whilst there’s extensive damage to that lobe, there’s still some parts of it that aren’t.

So we are hoping and praying that those parts will compensate and he will regain some of his vision back. At the moment he is blind in his right eye and can only see bits of light through his left. Plus his speech is currently very impaired so it’s very distressing trying to see him communicate.

No physio yet really as he’s had bad headaches and nausea and sickness (common we are told) and no plan yet til he is well enough for them to complete assessments. He’s not really eating which is a worry.

He is sitting convinced his vision will suddenly return, he said today I just need my sight to come back, which I think is getting him through the day - last time his vision was a bit blurry and it cleared up in a week or so and was left with minor damage only. This is a lot different. We aren’t telling him anything bad yet. Although when he does get referred to a neuro opthamologist they will be telling him the chances of regaining any sight won’t they. He can see something but I’m convinced it’s probably just light outlines. He can’t see people he can’t see his fork to eat. He won’t get better on his feet if he can’t see. He looks so frail and helpless.

It’s been over a week now and I’m still so so sad for him. He’s had a very physical job his whole life and been the one who drives everyone everywhere and fixes everything and does all the handy work and the cooking etc. it’s going to kill him that he can’t do any of that anymore.

Just hoping and praying that with some rehab his vision in his left eye improves enough to be able to see people’s faces and do things like washing and cooking and others tasks independently. Otherwise I really don’t think he’s going to cope.

2 Likes

Hi @Emmajt81
Very sorry you’ve had to join us.
Now you’re here you’ll find the forum full of people who share some element of your experience needs and those of your dad and mum.
They’re very willing to share their wisdom. You need to read posts to discover what they can tell you and it’s a good idea to master use of the magnifying glass above to target your reading - see below …

You might find

Useful as a clue about what his needs might be.

Discovery of multiple previous strokes isn’t that uncommon. Same with me when I had an MRI :frowning:

Some of us put together ‘often repeated’ bits of advice in Welcome - what we wish we'd heard at the start - Community - Stroke Association Online Community which i recommend as it tells you about the magnifying glass and more importantly initial recovery - your dad might get spontaneous recovery of sight but it’s not I believe very likely. And…
… he will get gradual recovery of capabilities from neuroplasticity - that will be the long term and takes effort & motivation which may not be there yet.
It also tells you to go easy with rushing into physio or other stimulation because this early stage will need lots of energy being burned internally -

It is important that those around him, I’m going to guess your mum also get support so you too. If you’re like most of us then You’re in this for the long haul and everyone’s emotions will be raw and energy will decline over time.

You might find Support Groups for Anne & anybody else 1of2 - General - Stroke Association Online Community
Useful too

I’m sure others will drop by and say hello aoon. They’ll give you some alternate perspectives that will also be useful

Keep reading and you will discover most of your questions will have been already answered. Keep posting to ask those you can’t find the discussion on

Best wishes to you, mum & dad for the journey that you’re now on

Ciao
Simon

3 Likes

Can he smell? Take him some sage, a lavender scent, lemon, maybe peppermint ; the smells and connection to nature will please him and motivate him. Good luck, Roland

4 Likes

@Emmajt81 hi & welcome to the forum. Sorry to read of your dads situation. Sounds like he has been / is going through quite a lot as are you all.

I had a right occipital lobe stroke which xaused vision issues. To a lesser extent than your dad though. The main issues with my vision resolved relatively quickly - a bit like your dad first time. I have some small issues remaining & passed the DVLA sight assessment. The ophthalmologist will be able to tell him the likelihood of things improving & what he needs to do to help that improvement. I was given vestibular & eye exercises for example.

Everyone’s recovery is different & your dad & you all, might need to prepare for it being a longer road this time. Many people do improve over time though so positivity & determination are important as is patience.

Sending my best wishes to you all.

Ann x

2 Likes

Hello and welcome to the group, that’s a huge ordeal that your dad and all the family have been through, keep the faith that things will get better

5 Likes

Your father has been through a lot. Things might get better over time. Your father is on the older side, so recovery will be more difficult. But, the most important thing is keeping an eye on his mental state, as it can deteriorate rapidly at his age, particularly after strokes, heart attacks, major surgeries, broken bones, etc.

My mother went insane, more or less, after her stroke. Not much we could do, and we did everything to help her. Not saying that will happen with your father. Apathy really took over my mother’s life, even though she had her memory, speech and parts of her old personality remaining. Her rational mind started to go in the second year, although they claimed she had no dementia. It was all chalked up to brain damage/emotional trauma/old personality traits. Who knows? She ended up dying from sepsis a few months before the second-year anniversary of her stroke.

I will be thinking of you and your father.

Take care of yourself as best as you can. It’s hard to live through these events - -very, very hard. We’ve all been there. We sympathize.

Bye for now

1 Like