I had a intracerebral haemorrhage in the back of my head in March 2019, this has left me with right homonymous hemianopia (visual field loss) I have had 3 visual field examinations now and at the last one i was told there will not be any improvment in my vision in the future, i had pretty much guessed that was going to be the case. So now i know i have to learn to live with my vision loss. I am struggling a bit, i go out when i have someone to walk on my right side as i can hold their arm but even with a escort i struggle in shops and being around lots of people. I have now lost all of my confidence, prior to my stroke i was a super confident, outgoing person, i travelled everywhere on my own on public transport all over the UK and on a couple of occasions outside of the UK. I am trying so hard to build my confidence back up just enough to enable me to go a walk outside on my own, it is my vision loss that is preventing me from going out on my own, i am frightened because of my vision loss and people rush everywhere. My quuestion is how do i learn to cope with restricted vision? (I am getting better at scanning)
Sorry if this doesnt make much sense but i am sure you will also understand how my communication skills have also got a little lost, it only took me about 40 minuits to type this
Thankyou for reading my message and i look forward to any replies
Hi Vonney, I also had an Inter cerebral haemorrhage, but fortunately it did not affect my vision. However, I do have macular degeneration in both eyes and have had two cataracts done since the stroke. I have just come back from visiting an old friend who has lost his sight in one eye and has deteriorating vision in the other. He has found RNIB enormously helpful. They have got him registered as partially sighted and are sorting out various aids for him free of charge. Can I suggest you contact them. I am sure you will find them most helpful.
After my stroke, I also lost confidence, especially going outside on my own. I started by just standing outside my back door for a few minutes, then adding a few steps a day until I could get to the end of the garden. At first, I found supermarkets terrifying despite having someone with me. If you are disabled you are almost invisible. Please remember that you have as much right to be there as anyone else. If people rush towards me I just stand still and they have to move round me. I also stand still if there are several trolleys converging on me at once. If people want to reach by me to get something I will move if they say excuse me, and will sometimes remind them of that if they try to push by without speaking, many people, however, are kind and understanding.
I try and shop with the supermarket layout in mind. I make a list based on that layout. I go shopping with my partner and our arrangement is that if we lose sight of each other I will stand in the central aisle until collected.
i hope this helps. I have also found online shopping and home delivery a big help if either of us is incapacitated. I hope this helps.
My sight was not affected by stroke. But I got the same effect as you have described. In fact described very well indeed.
Your question of how do I cope with restricted vision: I would want to deal with this in two parts. One would be to ask for help as a partially sighted person and the other part is to consider the stroke aspects. If you have "neglect" then thats outside my experiences. If you dont have neglect then you are doing exactly the right thing. Yu are slowly building yourself up again. Like many others, I started with the massive effort to step over the threshhold. Then five steps along the wall of the house. Then as far as the street. Then past one house then six houses. Building up just as you did as a toddler. When I made one mile I felt I had achieved my walking goal. Shopping was hard. But the Co-op supermarket chain are particularly obliging. They will assist going round the isles, but more relevant, they will assist at the till. I needed to say that I needed help.
Most of us were fit healthy specimins. Otherwise we probably would not have survived.
We are special as we have been chosen to live again.
It really is early days for you (yes I know how annoying it is to be told that). You are at the very start of a long journey to a recovery. Maybe you could set your goals. I had 20 goals and I still have one to achieve.
Many thanks for your reply Colin, much pf what you say makes sense.
I go out with my Husband as much as i can, my Daughters also take me out when they can and i have a couple of amazing friends who also help, my support network is very good.
I make sure i go out with an escort every day for a short walk whenever someone is available. I am beginning to feel a bit of a pain for asking now though (they tell me i am not but i feel i am) I, like you have found the co-op to be very helpful Tesco are also very good, Lidil and Aldi are a nightmare!!! I am learning to feel ok with making a joke or comment when i need a bit of extra time or help when i am out. I find humor helps a lot.
I do have to remind myself i need to give myself time to adapt and get used to only being able to do one thing at a time now, oh and also slowly otherwise i end up as i frequently do taking a step backwards and holding both my hands up in the air, my Grandchildren think that is very funny.
I have now swt myself a coupe of goals to start with, and i also feel a little bit of confidence by joining My Stroke Guide.
Thannkyou very much Colin. I hope your recovery continues well
Hi John thankyou so much for your reply, i found it very helpful.
I have just had a look at the RNIB website and i have literally just had a telephone call off Birmingham City Council Vision to organise an assessment with me so hopefully i will learn something from their input as well. A number of my friends has suggested i try using a stick, which i had up to now dismissed, but being sensible now i am thinking maybe they have a point as it is a visual sign to others that i my vision is impaired, i dont know, but hopefully i can get that advice from others.
I find supermarkets awful, to many people, all walking in different directions, lots of noise, bright lights fast checkouts money to sort out....screem!!! I do go with a family member or friend, we have learned to pick a quiter time, when we get to checkout if we have a number of items i stand back and let them unload trolly and pack bag and pay as i find it to stressful. Some people are very rude and impatient so like you i smile at them and is say please, thank you or excuse me quite loud hoping they get the message. I have found a couple of supermarket chains that are very helpful if you let them know you need help, Co-op and Tesco. I asked Lidil to slow down and the checkout assistant tod me she was not allowed to!!! I have foud mostly people are kind. My stroke consutlant suggested i tried using the self scanning machines in supermarket as you scan, pack and just pay at end, i havnt tried that yet.
Your reply has been very helpful
I hope you continue well with your recovery kind regards Yvonne
Thats grand, you are moving along the journey of recovery. John left a good post about who might help on the sight side. He is a kind and knowlegeable contributor . Something I am not sure about is telling people such as shop staff, that I am brain damaged. Perhaps not the right phrase. I guess mention of a stroke might be preferred. Will you carry a white stick to let others know you need consideration ?
I always go out alone. But I live in a village and its flat with decent pavements. So I guess thats different from my other home in the manic suburbs. I still havent gone there yet. And I can drive which also gives immense independence.
Vonney, there is a Life After Stroke Centre in Bromsgrove. They are very helpful too and have lots of activity sessions. Some of these might be useful too.
I think i may consider using a stick if it will help me to regain enough confidence to go out on my own, i do have to admit that i did get a little angry when it was first suggested but i am slowly comming round to realising it may be part of my recovery journey, hopfully as a temporary measure.
Thinking about you using the words "brain damage" maybe you would be more comfortable saying you have a brain injury, those words seem a little kinder. I do envy you living in a village, i am guessing most people know each other and are a little more understanding and are not always in a rush like many are in bigger towns and cities.
Hope you have a lovely weekend, take it easy, and thankyou again
Do use a stick. And for you a white stick would advise others of your sight issues. I take a stick (well a crutch) and dont even ground it. But its there "just in case" and helps confidence.
I like the term brain injury. It is indeed softer than brain damage. Thanks for that.
I might carry on with damage because my brain is damaged and it will never regrow or recover.
It is just generally nicer to live in a village. regret to say that the addition of several hundred new houses is rapidly destroying the village that I have known for 60 yeras.
People are difficult. They see how well I look, and dont grasp just what we are going through. And they all ask if i am feeling any better. I think humans are geared to ignore illness if it lasts more than six weeks.
People in cars drive much faster out here in the sticks. Harrow was much slower. I guess you couldnt go fast in the suburbs as too many cars in the way !
I had a subarachnoid hemorrhage in April 2019 my vision in my right eye bottom right hand corner has disappeared , I do find it quite scary if someone suddenly appears near me as I haven't seen them coming, I don't know if it will improve but I am hopeful.
Hi Katy, i understand exactly how you feel, it is really scary when people just suddenly appear, it really makes me jump i am learning to laugh at myself now. Have you had your visual field tests? I have had 3 and it was during my last test that i was told i will not have any improvment i need to learn to live with the vision loss. I do fine it scary but am determined it will not prevent me from getting my independance back.
How are you coping? Do you manage to go out at all?
I have just returned home from a weekend in Blackpool, i was determined my stroke was not going to stop me watching my Granddaughter compete at the Tower Ballroom in her dance competitions.
It was a real challenge, lots of people to navigate around and finding a seat to watch from a position and angle that was comfortable for me. I am extremely proud of myself, i did it with the help of my lovely family who surrounded me like a human wall, one thing it did prove to me was that i am convinced i wil benefit from a stick just to use as a visual sign to others that i need a lttle space.
It must be very sad for you to slowly see your village being spoiled with new builds. I have seen the same thing happen in Devon where my Sister in Law lives, her village is now like a town, such a shame.
I had an eye test at the hospital including a peripheral vision test but then had another at my local opticians but what really annoys me is no-one tells you at the time what's going on, it wasn't until I went to my doctor that he had the results and showed me have to say that wasn't a good day. It's getting slightly easier and I just have to make sure that I turn my head a little more to see. I have started walking to the local shops and I walk our 2 dogs with my husband but I think it's going to take time to get used to. I am really lucky that's the only thing I have to get used to it could've been a lot worse. Hope you're doing well now x
Hi Katy, i have had really good communication from my Consultants, they have been sending reports to my GP and also to me, i must be lucky in that way. I was in hospital for almost 4 weeks as well so did see doctors quite a lot.
I didnt have any visable effects following my stroke, it is my vision right side of each eye affected along with some confusion, fatigue and emotional problems, no pararalysis. I do go out with my husband, family and friends and i have tried to go out on my own but i am struggling if i dont have someone on my right side. I have made a decision to get myself a white stick, just to hold so people can see i have a visual impairment and hopefully they will give me a little space, i really need to go out without waiting for a guide, hopefully it will help until i gain enough confidence to go without it
My vision has mostly improved but I have cataracts so it’s not great. My greatest problem is my balance although that has improved greatly but I still can’t cope with crowds & am staggered by the number of young people who expect me to step to one side (guaranteed to upset my balance) & terrified by too many supermarket trolleys, although holding on to the one I’m pushing helps. Although I no longer need to use a stick to walk safely, I will still use it if I know I am going to be in crowds or travelling on public transport. I find people are much more likely to give me room, offer me a seat, etc.
I am not alone. I simply was not aware of any difference in my visual field. I went to specsavers for the first time in my adult life, and he carted me off to A&E after the field test. License gone, even though it probably happened years ago and have been driving accident free for 20 years. Just feels really unfair. I was diagnosed in September 2019. Will not be going to specsavers again. Ruined my life.
I had my visual test at Spacesavers in March 2019 send another appointment for hospital from there they sent me other hospital with in hours where they figured out I have clot in my brain because of clot and blood vessels has been damaged.
My right vision from both eyes is gone forever
licence is gone ..,since that day and on medication.
Hi Nadya, wow. Your event sounds awful, yes the plus side is your still here because of specsavers. And I'm glad for it. Was the difference in your eyes noticeable from before to after? I think this is why I am so angry. I never noticed any change. It's my right side on both eyes too.
i never notice as well but i do now and it scares me like hell. i have as yours right side on both eyes.
we was not able to notice because we have been lucky and also it is right side we move our eyes fully or head. just imagine if it was front vision we could have find it straight away.
my car just been sold on 10th oct i really want to cry but i didnt just a bit, as it must have been happen for a reason. when i had a stroke or how it was i dont remember. as i had ischaemic stroke.
please dont be angry. let it go whatever happened. now start a new life without car. its very difficult but slowly you will start enjoying. if you having a problem traveling to work there is help its called "access to work" please try
i have given myself a new name its called typewriter, you can understand what i mean if you have ever used the typewriter.
take care and be bold and enjoy this change, our medication is there to pull us down so you have to fill yourself with positivity and hopes.