Homonymous Hemianopia. Hard to say, hard to explain, sometimes hard to live with.

What is it?.

HH is a blindness in half (hemisphere), or quarter in which case it’s called a quadranopia, of both eyes caused by damage to the brain.

The eyes are not the problem, they work fine. The way I explain it sometimes is “hardware fine, software stuffed,” or as has been explained to me some strokes take out bridges, some strokes take out the city. In my case the stroke took out the bridges.

The eye sees a stereo image, a left and right image, in both eyes. The information from the right image is passed to the left occipital lobe for processing and left to right. My stroke prevented the visual information from getting to the left occipital lobe so I do not receive visual information from my right visual field. The stroke bombed the bridge, everything works but the visual information can’t get to the city, my occipital lobe, so I can not see it.

I get questions when trying to explain what HH is, like “are you blind in your right eye Adrian?” My answer is no, but I am in both eyes on the right side. In fact a person who is blind in one eye sees more than a person with HH. Best way I can explain it when talking to someone is to stand opposite them and tell them to draw an imaginary texta line down the middle of their face. I see nothing on the right side of that line.

Pictures say a thousand words. I’ve borrowed the traffic lights photo from a booklet called “Neurological Vision Loss A Guide for People With a Homonymous Hemianopia,” produced by Royal Society for the Blind.

The other two images are the results of a visual field test I did shortly after my stroke.

Visual field left eye (click on image)

Visual field right eye (click on image)

What do they mean? Well, what white van? That image is exactly how I see. I do not see things right in front of me. The field of vision tests are self explanatory too. The tests are of both eyes. All that black is not good. Some hemi’s are mild. Mine is dense, or complete, or textbook as I was told. At best I am aware of movement on my right when, for example, someone is wearing light colours and I see on my right better at night.

If there is no improvement in a hemi after the first 6-8 weeks further improvement is unlikely. Mine has been the same from day one.

Pluses and minuses.

Unlike walking with a limp or having a ‘mongy arm’ and hand that don’t work very well, a hemi isn’t physically inconvenient day to day. You learn very quickly to scan and adapt, at least I did, because I got sick of belting my head on a particular cupboard at home I didn’t see. You don’t need to wear an AFO (ankle-foot orthoses) for it, you don’t need botox injections for it, you don’t need to do hours of rehab for it, you don’t need to see doctors about it or take pills for it. It can’t, in my case, get worse and is unlikely to improve. I knew the hemi was the thing about my stroke that would bite me on the bum. I quickly learned to walk again and was a model patient in rehab for both walking and my arm and hand, doing all the exercises and more that was asked of me. But I knew the hemi just was and there was no exercises I could do to improve that. If I didn’t tell you I had a hemi you’d probably never notice. My six year old daughter is just starting to get her head around it and people including my best mate who is a stroke neurologist sometimes forget about it.

But it means I can’t drive.

The least inconvenient and least noticeable part of my stroke has the greatest impact on my life and is the greatest inconvenience. Not having a licence affects my earning capacity, ability to compete in the job market and my independence. Bit of a bastard really. I don’t like its impact on my family. Having had a licence for 17 years I had to argue to hand it back. The RTA, (I’m in NSW), told me they needed a letter from my doctor, I couldn’t just hand it in. I said that seeing you won’t take it back I’ll just drive there and get it.

“Oh no, you can’t do that.”

And that was my point, but they were going to make me pay a doctor to write a letter when I was standing there offering to hand it in. Not an easy thing to do considering its implications and instead of being understanding and pleasant they had to assess me. Six years later it still sticks in my craw. If you take nothing else away from what I say remember this, a licence is a privilege not a right. Treat it like gold, as life without one is hard.

Without the hemi, my stroke left me mildly disabled but still able to get back my life pre-stroke and drive. With the hemi it has really thrown a spanner in the works. And I now only drive on my sister’s farm and dodgem cars.

Another effect of a hemi is that people think I’m rude as I walk straight past them, or my neighbour who sat next to me on the train one day and after two stations pinched me and asked if I was going to say hello.

Trains are great alone time and I spend a lot of time on trains these days. I always sit on the left, put my earphones in, look out the window or read a book and even on a packed train none of you are there and I have a pleasant journey. Same with planes.

Because I can’t drive I do lots of walking, which can only be a good thing. I’d like to ride a pushbike to expand my horizons a little further and make a trip to the shops that bit quicker, physically I reckon I’m capable, but I just don’t think it is safe to do it.

Not driving has a financial impact and has brought my career prospects to a grinding halt. I am a horticulturist, a job that needs you to be able to drive. I have a job, for which I am very thankful, but I am also ambitious. I have applied for jobs where I have been told I am a fantastic candidate, or have great skills and experience, “but we can’t interview you because you don’t have a licence”. I may as well be told I can’t be interviewed because I don’t have blue eyes or am left handed, a couple of other things I have absolutely no control over. I keep banging my head up against this and it is hard not to let it get you down. My stroke costs me money in pills and splints and appointments and all the stuff that goes with it but it also costs me money by not enabling me to earn more. Stroke really is the gift that keeps on giving. My hemi is the opportunity cost. It is probably this more than anything else I dislike the most.

I have to think about where I sit at meals so that everyone is on my left so I can see them. When I go out in crowds with someone I keep them on my right so they stop me walking in to people. Movies aren’t good and there is no point in a wide screen TV for us. Watching fast moving things on TV or going to a rugby game is a bit frustrating because as soon as the ball moves out of sight I lose the action until I find it again. When I see bands I always stand at the front and on the right so I see everything. I once saw a band and didn’t realize there were two guitarists. Reading is different. It’s just different. As I scan across the page e a c h l e t t e r a p p e a r s t o m e. Looking at the start of a word I can’t see the end of it and it slows you up.

And I really don’t like that my daughter Eve has to walk home from school with me in the rain because we have no choice. But because we have no choice we’ve done a lot of walking together and spent lots of time walking and talking and looking and I’ve always felt that’s the good part of it and enjoyable. It has taken away but it has also given. Having hemi has also made me a better photographer and I like that. I still use film and I really have to look at what is in the viewfinder before I press the shutter. I learnt that early when I had some photos developed and was surprised by what I’d missed because of what I was looking at. Or wasn’t looking at. Now I compose an image much better because I look more carefully. To go with the photography, I like bird watching. Bit hard when you can’t see half the bush. My best mate and I were on a four day bush walk, we were sitting on a rock enjoying the view and He said, “what sort of bird is that?” and I said “what bird?” it was right in front of us. So now I’m learning to identify birds by their calls so I know what to look for. Losing half my sight has paradoxically made me a better bird watcher.

I hope you have a better insight, boom-tish.

Hard to say but just call it hemi. Hard to explain but I hope I explained it and if I didn’t I know a good neuro who can. Sometimes it’s undoubtedly hard to live with but compared to lots of other effects of stroke the effects of them are pretty benign. I can still walk, I can still talk.

As I said it has taken away, boy has it taken away. I was and still am fiercely independent and now rely on others, but it has also given. I would not swap for a moment all the time it has given me walking with Eve in her formative years. It is a pretty high price to pay but the dividends are life long.

Cheers, Ade.

Image via newcastlestar.com.au

See Allisons 2011 TED talk. ‘Make stroke sexy’.

Congratulations to long-term National Stroke Foundation supporter Allison Hammett from Stockton in NSW who was recently awarded the NSW Government’s Community Service Award for her long-standing service to the community sector.

Ms Hammett is a stroke survivor who has over 30 years of experience in the community sector and in senior management roles, as well as various project management and community development roles.

Since her stroke Ms Hammett has devoted a great deal of time and energy working in the community to support stroke prevention and has developed and implemented large-scale behavioural change programs for the NSW Hunter Region. She has held various roles in community organisations, local committees and government ministerial taskforces.

She is currently a consultant to the community sector and chair of Octapod, a Hunter arts and cultural organisation.
National Stroke Foundation CEO Dr Erin Lalor said Ms Hammett exemplifies the many people who contributed their time and skill to help raise stroke awareness in the community.

“We applaud Allison and her contribution towards reducing the incidence of stroke,” Dr Lalor said.

My name is Maureen… in May last year at the age of 41, I suffered a massive stroke.

My husband recognised the warning signs and sought urgent medical attention.

His response prevented devastating, permanent disabilities or more likely… my death.

Life for me, still revolves around rehabilitation, but I’m definitely one of the lucky ones! I expect to eventually make a full recovery.

My family would like to raise awareness about the warning signs and cause of stroke, while raising funds for the National Stroke Foundation.

Saturday October 22nd from 7.30pm til approx 11.30pm.

Chelsea RSL, Thames Promenade Chelsea (Victoria).

Guest Speakers:

Dr Bruce Bolam Divisional Director of Prevention and Awareness, National Stroke Foundation.
Mel and Carol Hughes Mt Eliza / Mt Martha Stroke Support Group.

If you would like to book tickets for the dinner or make a tax deductible donation, please email Maureen M_lesjak@yahoo.com.au

It is vital that stroke survivors and their families know what is available to them in terms of best resources, information and support. Helen Povey, a stroke survivor and consumer advocate from WA, has made this imperative her work and personal mission.

Helen holds various positions in the field of stroke and neurosciences and is a committed voice of stroke support and awareness change. She is currently working on a consumer guide, “All About Stroke” that will provide a resource to stroke survivors and their families.

In November 2003 Helen had a cerebral aneurysm and was given only a 20 per cent chance of surviving the surgery.

She describes herself as “nothing short of a miracle -  what a rollercoaster ride to recovery lots of appointments, assessments, angiograms, two lots of brain surgery, short term memory loss, vertigo, tinnitus, peripheral vision loss, couldn’t drive, couldn’t work, couldn’t stay focused on a task, depression, anxiety, low self esteem, gratitude, guilt, fear, more fear, peace, anger, frustration, lifestyle changes …”

Helen, who has a masters in human resource management, says she found it a challenge to reestablish herself in the workplace after her stroke.

“I was my biggest critic constantly questioning my every move.  Did I say that right?  Do they think I’m stupid?  Why can’t I remember what I’m saying?  The work gap got wider my self esteem got lower.”

In a need to reinvent herself “and find a place in this world where I belonged after my stroke, that was meaningful and gave me a purpose” she has taken up roles as a consumer representative, consumer colleague and “like-minded friend - an expert by experience like you”.

“I now use my lived experience combined with my education and life experience to enrich the lives of others in the stroke community.”

Helen is starting a new consulting service for stroke survivors. Among the topics she will cover are “reinventing yourself”; the importance of social support and community care after hospital.

“I want to show people how to use their good - or bad – stroke experience to improve services and help everyone find their call to action.

“Everyone has one.”