New member - Von

[Von]

Hello

I am new to this site

 

I am a 62 year old female and find I am struggling following my stroke which happened on 16th March this year (5 months ago)

 

My discharge letter reads:

CT head revealed an acute left parietal intracerebral haemorrhage. MRI showed a large left inferior parietal lobule/occipital lobe early subacutehaemorrhage, with left subdural extension. 

I now have right visual homonymous hemianopia.

 

Firstly despite asking my consultant and GP to explain exactly what this means, I am still struggling to fully understand what happened.

 

Secondly I am really struggling with my vision loss. I do not feel able to go out on my own at all, I am more comfortable if I can hold onto someone's arm (on my right), my confidence has completely gone. I cant see any light at the end of the tunnel!!! Can anyone offer any advice or  guidance on how I can best help myself? I have considered using a stick or even buying a white symbol cane, just to help build my confidence then maybe I will stop walking into things/people.

 

I do struggle with everyday tasks, can only do 1 thing at a time now, cant cook a roast dinner and have had silly labels put on my hob to assist me to turn on correct gas ring. I am very slow and still have a great deal of fatigue. I also have problems with understanding at times, I have to read things a few times and I forget easily so I have learned the answer is lists, lists, lists, they are everywhere.

 

Prior to my stroke I was extremely confident, outgoing and completely independent. I walked almost everywhere or travelled on public transport visiting family and friends all over the country.

 

I do feel frustrated at times when people look at me and say "you look fine now" and then follow on with " so and so had a stroke, it was a really bad one, they have lost the use of  left side (or whatever)" It makes me feel that because I don't present with visual signs of stroke that they don't understand how I have been affected.

 

Sorry for long post

Von

[Skippy]

Hi Von

 

Welcome to BTG and the family.  Sorry, however, that these are the circumstances under which we all meet here.  

 

The only information I can give you - after talking with Google, you understand is the following explanations of the conditions you have written in your post.  None of us here are medically trained and cannot, therefore, offer you any medical advice.  The information below is purely from looking at Google - maybe do a little research of your own, or get someone to help you do so.

 

From Google

 

Intracerebral hemorrhage (ICH), also known as cerebral bleed, is a type of intracranial bleed that occurs within the brain tissue or ventricles. ... In many cases bleeding is present in both the brain tissue and the ventricles

 

The parietal lobe is at the back of the brain and is divided into two hemispheres.

 

Inferior parietal lobule has been involved in the perception of emotions in facial stimuli, and interpretation of sensory information. The Inferior parietal lobule is concerned with language, mathematical operations, and body image, particularly the supramarginal gyrus and the angular gyrus.

 

Hemianopsia, or hemianopia, is a visual field loss on the left or right side of the vertical midline. It can affect one eye but usually affects both eyes. Homonymous hemianopsia (or homonymous hemianopia) is hemianopicvisual field loss on the same side of both eyes.

[Winb143]

Hiya Von,

 

Sorry to hear about feeling low, I was the same as they wrote me off the OT's.  We take a while to get better and this is where this site comes handy.

 

I came on here and saw others who could smile about what happened to them, and that in itself helps us realise we are not the only ones.

 

5 months after my SAH I wasn't even awake took nearly a year and a shunt to be put into my head to wake me up.  Then I couldn't sit straight but the love of my Family and this site helped.  I also found singing helped me.  Ruined it for others  though lol xx

 

Short Term memory is awful but we are Survivors and as the months go by and we get better and better and more determined and when down we have each other to talk to xx   

 

Was told I'll never walk again ...Walked into Sainsburys cafe I'll do anything for a breakfast. 

 

Keep remembering  you are a survivor some don't get this far, Good luck on recovery and Welcome to BTG xxxxx

Win xxxx

[Chelle C]

Hi Von,

 

Welcome to BTG as we call it, sorry to hear about your stroke, you have come to a great place for help and advice. 

 

It is still very early in your recovery and fatigue us one of the side effects that we all suffer after a bleed, memory can also be badly affected at first, there are some members of BTG who have problems with their sight, I'm sure someone will come along and share their experiences with you, 

 

Try to be kind to yourself, recovery takes time, your body and your brain have suffered, they both need time to recover, try and make sure that you rest when you feel tired, sometimes in early recovery the smallest of tasks can wipe you out, also try to stay well hydrated as this will help with any headaches that you might have.

 

I think we have all had experience of people saying " you look fine "  they can't see it, so you must be OK, try not to stress to much about other people's comments, you know what happened to you, not all strokes have visual signs, I had SAH June 2014 then suffered a stroke December 2014, I have no visual signs of that stroke, but it did happen.

You could try explaining it to people, if they don't understand then let that be their problem, you explained it.

 

I wish you all the very best as you go along the recovery road, it can be a bit of a bumpy road, don't give up hope, there will be light at the end of this tunnel, it just takes time to get there. Take care 

Love 

Michelle xx

[Swishy]

Hi Von,

 

I am so glad you found us.  I am so sorry to read about what has been going on with you.  Trust me I (well everyone here) understand your struggles.

 

I personally had my SAH followed by Vasospasm when I was 64.  I did not have any vision problems, it must be so difficult.  But like you I had the "you seem fine" comments which was good in one way but not another. 

Sometimes I wish people could see that my balance is off and I don't like people walking quickly past me and I struggle in the kitchen , anyway I think you probably understand.  

 

I am 2 years 3 months out, it is a slow recovery, sometimes i could only see improvement when looking back.

Having a stroke can steal our confidence, making us search it out and reclaim it.  As I said it can be slow.  

I still feel not satisfied with the information I was given as to what happened to me.  It seems a little less important to me as time goes on, but only a little.

 

There are so many great people here that are so willing to share and listen...they are great...Has been a big help to me, knowing they know, they get it...Take care and try ( I know it is hard) to be patient with yourself..

 

xxJean

[V.Mama]

Hello Von

 

I hope you find comfort and support on this site.  My husband had a non aneurysm sub arachnoid haemorrhage in May 2019.  People also say to him 'you look great, you look like you'.  Which is a bit of a weird thing to say, they obviously expected to be able to see that his brain is injured, but of course brain injury is a hidden condition.  He still has a large dent in the front of his head where he had a drain inserted for 2 weeks after he got hydrocephalus.  I joke that he should get a tattoo of my thumb print on it.  

 

Everyone's situation is different, different countries have different supports available and I'm not sure how you can navigate the supports in your local area, but maybe some members on BTG will be able to guide you?  I'm in Australia, if that is helpful.

 

I wonder if there are any other supports available that might help you to regain your confidence in navigating around your neighbourhood and on public transport?  My mother in law had a stroke that resulted in the loss of the left side of her vision, and she was eligible for specialist support and resources from Vision Australia.  Support included relearning to navigate and feel confident outdoors and in her home, so I wonder if something like that might be available to you?

 

I'm hoping you can receive some support to regain that which you have lost.  It is a slow journey, be gentle with yourself and your expectations.

 

All good things for you

 

Veronica