I am 45 and have had 3 ischemic stokes in 3 hours 9 months ago. Fortunately got to the hospital quickly and despite the 3rd being like a baseball bat in my head for 3 hours I count myself lucky.
I have various complications and some other stuff, and I’m trying very very hard to deal with it. As everyone knows it’s not easy.
But one of my biggest issues is full right hemianopia due to my third stroke smashing up my occipital lobe.
I have not heard much about anyone on this forum with hemianopia and would welcome anyone else’s thoughts on the matter.
I have basically totally right hemianopia so 50% vision. And just to say to people who are not aware of this it’s in both eyes so closing one eye doesn’t help!
I use various canes and try and scan as much as possible but I struggle to read much at all and blow up phones / screens etc.
Hi, I’m 6 years post stroke following a hemorrhagic stroke which paralysed my left side. I also have visual issues and lost my peripheral vision on my left side.
I was an avid reader pre stroke and really miss it. As well as vision problems, I also find it difficult to to concentrate and stay focused when reading and tend to stick to reading magazines and short articles. There are 2 websites you might find useful which offer free on-line therapy for stroke survivors.
Eye Search and Read Right
Both have been developed by UCL and are funded by the Stroke Association.
I used them in my early recovery. Might be useful. I was told that the damage caused by stroke cannot be repaired but maybe there are tips to make reading easier. I hope you find this useful.
So sorry about your strokes and vision problem. It is so important to see a neuro-opthalmologist and not just an ophthalmologist. They know both the brain and Sight issues. Maybe you have already done this? I had horrible double vision and it really affected my balance and hampered my therapy, slowing down recovery. Thanks to the knowledge of my neuro I’m just about back to normal vision.
I wish you the best…prayers and good wishes.
Derek
Yes I have seen the neuro-opthalmologist and had all the tests and visual field maps etc. The occipital lobe stroke was the worst one for me i’m afraid.
I can’t speak for Susan or Chlodog, but aside from some coping techniques unfortunately there is zero hope for recovery for me.
I’m glad you are nearly back to normal - you’ll keep improving I hope!
I understand your concentration difficulties very well, because of my mother. She had a left hemorraghic stroke that affected her right side of her body. She recovered very well physically from the stroke (could walk very normally and use her affected with just very slight weakness after 7-8 months or so), but NOT mentally and emotionally. Her concentration abilities and apathy were both terrible: she couldn’t spend more than 5 or 10 minutes on any given task, even though she could play Solitaire very well. Her speech and memory were also excellent. It’s weird how her brain bleed affected her emotions so deeply, whilst she was able to make almost a full recovery physically. Sadly, she died a few months ago from complications related to seizures that she developed from her brain bleed a few years ago.
Please take care of yourself. I know how difficult and life-changing strokes are.
The Pele lenses sound interesting thanks I will look into them!
Hallucinations!!! Yes all the time. I often find that my mind makes up something on my right, even just sitting at home. My housemate normally sits on my right in the living room and I can’t see him normally if looking at the TV or at the floor or table as I most often do, but I imagine he is standing up or eating something or wearing a particular shirt and then I look round to find he has actually gone into the garden for a cig and isn’t even there…
I also get a sort of chain of broken glass type weird diamond stuff across the border of where my vision disappears and this can just make me have to stop and close my eyes for 10-15 mins.
I also see the morphing stuff and lots of animals like polar bears in the street! odd! The brain is very weird.
I have no medical training either and try and do as much research as I can but haven’t really been able to properly explain the broken glass stuff to anyone or find much but what you say makes sense.
I’m going to try more exercises. I think I must be due another neuro-ophthalmologist appointment soon I think so I will also make a few notes about what everyone has excellently contributed to this thread and talk about them.
OMG you should have had some specialist referrals surely?! Do you have a good stroke consultant / GP who can refer you?
One of my problems that really annoys me is that people keep saying to me you look good!
Yes because I’ve lost 2.5 stone in 9 months and one of my biggest pleasures is going to the barber and making sure I am presentable.
I literally had someone say to me the other day - well you don’t look blind. Arghhh. I said I’m not blind I’m partially sighted as I said and you don’t look like an idiot but you clearly are one. And I don’t like being like that. I find it difficult to explain to people. Why can’t you just close your right eye? Because it’s in both?
So I have taken to carrying around a copy of this with me this as it helps a bit sometimes.
What does a blind person / partially sighted person / stroke survivor look like anyway?!? I would love to know how to tell.
I now use a sunflower badge and with my cane and RNIB overshields and being 6’2" that helps.
Also Elle have you got a proper CVI etc? and your PIP stuff?
It’s all so complicated but I’m lucky to have a weekly occupational therapist visit and she has been a god send!
I am only 9 months in and I got diagnosed with hemi in about 2 weeks.
Please tell your GP that he / she needs to sort this. Show them this forum. Seriously. You need some proper referral stuff.
For me I am a medical anomaly apparently. I had 3 strokes at 44 and they have no clue why. Arterial fibrillation? Not really. Bone marrow issues now causing sticky blood but have also been anaemic but not pre stroke so I am having test after test and no one can tell me anything. I have had seizures and other stuff. Literally no one can tell me why of anything. BUT - they do try and I have 5 consultants.
I can’t say how much I feel for you having to try and do this all by yourself. Get the SA and RNIB to help - they will.
I live in London and the care I can’t fault. It’s not the NHS’s fault I’m odd!
Sending so much love - be strong like a polar bear! xx
Well don’t rush into it but if you do let me know and I might come with you! But two people with hemianopia in the same town?!??!?!? We might have to live a bit apart!
