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A stroke or brain injury can easily disrupt the sophisticated complex subsystems involving the flow and processing of information that allow us to see the world around us.

A brain injury (stroke) can lead to focusing problems, eye muscle coordination deficits, changes in eyeglass prescription, and peripheral vision changes. The type and extent of any visual problem depends on the severity and location of the injury. Even when
visual problems are diagnosed there is often little vision rehabilitation offered.

Some symptoms to look for are:

• Headaches from visual tasks
• Blurred or double vision
• Sensitivity to light
• Inability to concentrate or focus
• Reading or comprehension difficulties
• Trouble judging distances
• Sore eyes
• Loss of visual field.

If you find it difficult to process visual information you may be straining without realising it. A general sense of fatigue can arise from visual problems.

Causes

Trauma, stroke and other Acquired Brain Injuries (ABI) can cause damage to parts of the brain responsible for visual information processing. Even if the head does not hit anything, whiplash can cause injury to the brain. Trauma may injure arteries, stretch nerves or damage the vertebral column itself. It can also create soft tissue damage that may cause eye muscle coordination problems.

Common visual problems

Dry eyes

This can result when nerves or muscles of the eyelids are affected. Symptoms are often relieved with the use of correct eye drops. In severe cases plugs placed in the tear ducts can solve the problem.

Double vision

This condition may cause confusion and disorientation. People experiencing this are often given an eye patch, although this reduces the field of vision and can interfere with daily function. Double vision can often be prevented without an eye patch, through the use of prisms and vision therapy.

Loss of visual field

This loss can occur in any part of the visual field and is a common visual affect following ABI. One example is loss of half of the field of vision in each eye. People can frequently bump into objects, and easily trip or fall over objects. They may be afraid of leaving home and have difficulty reading. Therapy can assist with object detection and encourage constant scanning to compensate.

Reading difficulties

These may arise from blurred or double vision, jerky eye movements, or visual field loss. Treatment can involve aids such as prisms or using a typoscope to focus on individual sentences. After injury, it can be hard to focus on a page due to nerve damage that affects the eye’s refocusing. Bifocal glasses can sometimes compensate.

Low vision

Following a brain injury (stroke) some people have a normal field of view but can’t read print or watch television with conventional glasses because of low vision. Low vision aids include telescopic lenses for distance vision and a range of magnifying aids for reading and other fine tasks.

Photosensitivity

Light sensitivity varies from person to person. Some have no trouble but others may find bright light painful. Solutions may include tinted eye wear, or amber filters.

Hallucinations

Visual hallucinations may be formed objects such as a person or figure or may be unformed such as flashes of lights, stars or flickering distortions.

Impaired visual memory

Memory is often impaired after stroke or head injury. In rare cases very specific types of memory processing are impaired. A person may no longer be able to recognise faces, objects or letters.

Vision rehabilitation

After a brain injury, some people experience a natural recovery within six months. Recovery can be assisted by using the necessary prescription lenses, and speaking with your rehabilitation specialist.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Directory for Vision support

The StrokeConnections Team came across an interesting article recently by a research associate at Adelaide’s Flinders University, Dr Bradley Smith. Published in the Royal Australian College of General Practitioners’ publication the Australian Family Physician (AFP) in June, Dr Smith’s paper draws on other studies to examine the health benefits of pet ownership.

Among the documented benefits of owning a pet that caught our attention are:
• Improved cardiovascular health – pets can reduce stress and lower blood pressure (the highest modifiable risk factor for stroke)
• Physical fitness – although this was mostly related to dog ownership, pets can improve your physical fitness by making you more active than you may otherwise be in a day
• Improved social health – pets can be a good way to meet people and can open other social options, like joining an animal club or society.

The list goes on – pets can have a positive effect on mental health, and can have a powerful role in child development for some children. If you can’t have a pet of your own at home and you like the idea, there are still ways of reaping some of these benefits. Some pets are very low-maintenance (some fish, for example) but if it’s doggie fur you’re after there are some alternatives. Go for a walk with a friend and their dog or even make the most of dog visiting services. The Delta Society Australia is one not-for-profit organisation that “exists to promote positive relationships between people and companion animals”. Carefully selected volunteers and their dogs are available for talks and visits in community group settings and facilities. Contact www.deltasociety.com.au

Has your pet been a special influence in your life after stroke? We’d love to hear your story and feature it in a future newsletter: strokeconnections@strokefoundation.com.au

Our friends at the Toowoomba Rehabilitation Unit Support Team (TRUST) produced their own cookbook to celebrate Stroke Week this year. The recipes in their book have been compiled from monthly newsletters and shared by families and friend of their group. The book is $12.50 for details call 07 46 166 166.

Breakfast muesli muffins

• 2 eggs
• I cup buttermilk
• ¼ cup light olive oil
• 2 tbsp honey
• ¼ cup plain flour
• ½ tsp bicarb soda
• I large orange
• ½ cup of muesli

Heat oven to 200 degrees C
Line muffin tray with paper or grease
Combine muesli with the dry ingredients
Juice the orange and add to mix with other wet ingredients
Mix until combined
(it’s ok if it looks lumpy)
Spoon into tray
Bake for 20 minutes

After Stephanie Ho suffered a stroke, top-notch medical care saved her life. But when it came to regaining the use of her arm, Stephanie and her family were left to work it out on their own.

NeuRA’s Dr Penelope McNulty is developing innovative training techniques to fill this gap in services.

The day of Stephanie Ho’s stroke started out like any other Saturday in the life of a typical 22 year old. Out late the night before, she’d slept-in until midday. But when she woke, her world had completely changed.

“The first thing I did was go to brush my teeth,” says Stephanie. “My mum was there and asked me how my night was. I wanted to say ‘it was really good’, but what came out was this strange sound. No proper words came out.”

In shock, Stephanie went to find her older brother, Mark. “I was trying to type on his keyboard, but I couldn’t string two words together. Shortly after, I completely toppled over on my right side. My poor brother, he didn’t know what was wrong. He knew that, at my age, people don’t have strokes.”

What no one could have known was that lying dormant in her brain since birth was an arteriovenous malformation. That morning, this abnormal cluster of blood vessels burst, leaving Stephanie completely paralysed on her right side.

Her family rushed her to the hospital, where she stayed for almost three months. “The first week was horrible, horrible. My vision was impaired. I couldn’t move. I couldn’t talk. It was scary, to say the least.”

Gradually, with the help of physiotherapists and speech pathologists, Stephanie learned how to walk and speak again. But she still couldn’t muster much more than a flicker from her fingers. “My movement was very, very limited. I just took my right arm out of the equation. I couldn’t do anything functional at all.”

Determined to find a solution, Stephanie’s brother Mark, a researcher himself, tracked down NeuRA’s Dr Penelope McNulty, who was developing rehabilitation techniques to improve arm and hand movement using virtual sports on Nintendo Wii.

“There is a real lack of services for people who’ve had a stroke,” says Dr McNulty.

“Because arm and hand movement isn’t considered critical, rehabilitation in this area has been somewhat neglected. But being able to pick up a cup or hold a pen makes a huge difference to a person’s ability to live independently.”

In a recently published study, Dr McNulty has shown that intensive, two-week training can result in significant improvements in movement in affected limbs. “Every patient noticed improvements, not just using the Wii, but in activities they do every day, such as opening a door or using a fork. This type of rehabilitation, using virtual reality, motivates participants to complete their therapy, which is essential for recovery to take place.”

Stephanie says the training at NeuRA not only improved her range of movement, encouraging her to achieve simple things like holding her toothbrush to put toothpaste on; it also helped her regain her confidence to make a full recovery and tackle larger goals like going back to work.

“Before the Wii therapy, I was too scared to test myself. But being a part of this research helped me to try, and while I didn’t do it perfectly at first, I still did it, and for me that was inspiring.”

Read more about our stroke research. www.neura.edu.au

Life after stroke - Stephanie practises her swing using the Nintendo Wii “There is a real lack of services for people who’ve had a stroke.”

Many people love to garden and it can provide gentle to strenuous exercise for all fitness levels depending on how you go about it. Returning to everyday activities and hobbies, like gardening, after a stroke can be difficult but it is possible to modify the way you go about it so you can still get some enjoyment out of your favourite pastime – whether you tend to plants indoors or if you have an outside garden that needs care.

Gardening can also support your rehabilitation after a stroke. Thirty minutes a day is excellent but remember you can break that down into three 10-minute sessions. Always stop and rest if you feel tired or breathless.

The Better Health Channel website offers some tips on how to garden when you are living with a disability - remember gardening equipment can be modified but look for lightweight tools.

Other tips:
• raise garden beds for easier access,
• use a table to pot if you are in a wheelchair,
• use containers with wheels so they can be moved around easily,
• have a supply of water close by,
• wear hats and sunscreen when working outside, and
• vertical gardens, which make use of walls, can be more accessible than plants at ground level.

www.betterhealthchannel.vic.gov.au

Some terrific ideas and fact sheets on gardening, written especially for people who have heart disease or have had a stroke, are available from a UK website called Thrive. Their resources can be downloaded for free and include step-bystep how-to guides and pictures to support the text.

The resource, called Gardening for Hearts and Minds, covers getting started in the garden; planting and pruning; weeding and maintenance and tips and tools.

www.thrive.org.uk

Image Via: themagnetos.com

This article was first printed in Synapse Bridge Magazine Vol-5. Official journal of The Brain Injury Association of Queensland.

Everyone has problems from time to time. Some are minor while others are of major concern. However, for someone who has suffered a brain injury, even the otherwise minor problem magnifies to enormous proportions if compensatory strategies are not used to control the situation.

Since I have been adjusting to my life to compensate for my brain injury for many years now, I  make use of my compensatory strategies on a regular basis to deal with cognitive problems. Cognitive rehabilitation makes living with brain injury tolerable and enables a more satisfying life.

Larry and I usually ride together if we are going to grab a bite to eat. Due to my lack of peripheral vision, which makes driving a challenge. Larry usually does the driving. On this day, he had been doing some electrical work around the house and was tired, so I offered to pick up lunch at Sonic. He agreed and I was on my way with the list of what to order (another strategy).

When it was time to leave Sonic, my car wouldn’t start. Anyone who is familiar with brain injury is not surprised that my first reaction was panic. “oh no- Why is this happening to me? What do I do now?”

Then I took a deep breath and asked myself to pull a strategy out of the tool chest. After determining which strategies fit the situation and which to use first, I reached for my phone to call Larry to let him know what happened. He was soon on the way to the rescue with jumper cables. In the meantime, I retrieved my owner’s manual from the glove box just in case it was not just the battery (planning ahead). Rather that becoming emotional, I was trying to figure out how to best solve the problem. That’s a big change from when I had no strategy to remain calm and develop a plan.

The car did not start with a jump so we had to leave it there overnight while we figured out what needed to be done. I informed the manager of the plan to temporarily leave my car there. He was very understanding and told me he would make sure it was not towed away before we returned.

The next morning, after reading the manual and doing some research on the internet, we replace a fuse and my car started after another jump. I drove it home and pulled into the driveway just prior to very cold rain.

Though it was not pleasant to deal with, there’s always a silver lining to an unfortunate situation.  Here’s a few things we are grateful for:

1. We were not together and have two vehicles, so I could call Larry for help.
2. I had compensatory strategies that helped me remain calm and able to think.
3. I had my cell phone with me.
4. I was not far from home.
5. I was parked in a place where jumper cables could reach.
6. I was able to explain things to the manager who was understanding of my dilemma.
7. We were able to work together to find and correct the problem which was not too costly.
8. We made it back home prior to bad weather.

Be as prepared as possible for the unexpected and always plan ahead for any trip. You never know what challenge you may face when least expected. Compensatory strategies help compensate for what was lost as a result of the brain injury.
Beth has been posting to her blog since 2008 after acquiring an anoxic brain injury. You can visit her inspiring blog.

If you want to talk to someone about developing your own coping strategies your Occupational Therapist is a good place to start.

Download a Thinking and perception fact sheet .

Image Via printerinkcartridgesblog.printcountry.com

The link between osteoporosis (where the bones become fragile and brittle and more prone to breaking) and stroke is still not entirely clear but we know that people affected by stroke have a higher risk of developing osteoporosis than people of similar age without stroke. Bone loss after stroke is often rapid and more pronounced in the side of the body that was affected by the stroke. Although the cause of bone loss is unclear, the amount of bone loss experienced by people with stroke appears related to the length of time they are immobile, the extent of muscle weakness and atrophy (shrinking muscles) and reduced weight bearing activities (like walking) and fitness.

Associate Professor Julie Bernhardt, who is a member of the NSF Clinical Council and a specialist in stroke rehabilitation, says research is continuing into the best way of preventing osteoporosis after stroke but stroke survivors should be careful to reduce their risk of falling.

She recommends that you:
1. Reduce risks of falls by having an assessment of your home environment completed; this may include checking lighting, floor coverings and bathrooms.
2. Hand rails in some rooms may be useful
3. Make sure that your medications are monitored regularly (drug interactions and sleeping pills can increase your risk of falls)
4. Take part in regular exercise to help maintain your mobility, strength and balance.

Falls are common both in hospital and out. Therapy and nursing staff are particularly concerned about people affected by stroke having a fall and they may require that someone is with the person at all times when they walk, particularly in the early phase of rehabilitation. Not all falls lead to injury however, so it is always the case that the rehabilitation team weigh up the need for the stroke survivor to have independence (and practice being independent), with the possible risk of falling. Something that should be covered in a rehabilitation plan is teaching the person how to get up again if they fall but are not injured. This can be a really helpful thing to learn!

There is still a lot we need to learn about the link between stroke and bone loss and the most effective ways to prevent or slow it. There are a number of researchers around Australia interested in this issue and they hope to answer some of these questions in the coming years. In the mean time, be active and exercise as much as you can. It seems to be a promising intervention to help general well being and health as well as your bones.

Image via benditlikepretcell.blogspot.com

I’ve had a few falls, usually doing something risky with my balance and/or seriously overestimating my ability. This is silly as I know I have balance issues.

At first it was just getting used to my disability, getting to know my weak spots. Just one example is tent flaps! I used to trip over them before the stroke but could correct myself and usually stumble, not fall. But after the stroke I was literally falling flat on my face. The causes are many and varied: tent flaps, carrying too heavy a load, too much chardonnay, getting too tired, kids (wonderful though unpredictable in their enthusiasm), bi or multifocal glasses or just not looking!

I am still surprised every time I feel myself falling toward the earth, anticipating the inevitable pain and wondering at my own misfortune. There isn’t a way a middle-aged mother can fall elegantly. It’s embarrassing; horrible when you know you’ve done a serious injury and quite worrying for the future.

Falls are associated with morbidity and mortality rates, especially as you get older, so it’s very important to do everything you can to avoid them.

To get in early, I have started doing Tai Chi as my GP told me that it has been proven to help in falls prevention. I am kind of fit but despite that I found Tai Chi quite demanding. It certainly challenged my balance and therein lays the point - balance!

When I asked at my Stroke Association lunch if anyone had had a fall, the majority said yes and everyone had balance issues (nb: lunch at the local pub isn’t rigorous science, I know).

But we all try to avoid falling and these things work for me: going to the gym to increase strength sort of helps me bounce instead of fall. Avoiding impatience, avoiding rushing things and taking more care when I am tired. Resting. Not over-estimating my ability (we are all guilty of this!), going easy on the alcohol and simply looking where I’m going.

A friend from the pub lunch has been attending a community health falls prevention program in my local area (Banyule, Vic) called ‘Make a Move’. It is a fantastic program with physiotherapy-based exercises, information sessions from occupational therapists, GPs, physiotherapists, optometrists, nurses and dieticians. Her balance was assessed and had improved after the program.

Falls prevention is very important in taking care of yourself and preventing injury. Some good starting places are local councils and community health organisations. There are some email addresses below that could be helpful.

With the festive season nearly upon us just remember to take it easy - not too much partying - and steady on the egg-nog .Have a great Christmas and New Year!

Don’t fall for it. Falls can be prevented! A consumer booklet published by the government is available on the internet link below and downloadable as a pdf or can be ordered by phoning call the Aged Care Information Line on 1800 500 853.

Aged Care Information Line

Falls clinics are available in most states, ask your GP or allied health professional for more information or refer to following internet links:

Victorian Falls Clinic Information:
NARI (03) 8387 2305

WA Falls Clinic Information

ACT Falls Clinic Information

NSW Falls Clinic Information

SA Falls Clinic Information

TAS falls clinic:
Department’s Falls Prevention Clinic on (03) 6222 7312.

QLD Falls Clinic Information

The National Stroke Foundation is conducting a national survey of stroke survivors and carers of stroke survivors. We need your help to find out what stroke support or services are currently needed in Australia. The survey provides a unique chance to have your say on what needs are not met after a stroke. This information will be used to inform future strategy and advocacy work of the National Stroke Foundation. Many of you will soon receive a survey in your mailbox and we encourage you to complete and return to the NSF or complete over the telephone. For other people who don’t receive a survey and would like to participate please email Jacqui McKenzie

Annie McCluskey and the Out-and-About Trial
While stroke is Australia’s second biggest killer in terms of medical research undertaken in Australia, stroke research is greatly underrepresented. In 2010, funding for stroke research by the federal Government via the National Health and Medical Research Council (NHMRC) represented only 3% of the total investment in medical research. A small sum when compared against cancer (23%) and cardiovascular disease research (15%).

The NSF is offering funding to scientists to commence research into stroke and its complications. This seed funding can then be used to build evidence to apply for larger competitive Government grants.

One such research project was undertaken by Dr Annie McCluskey, who in 2009 and 2010 received funding from the NSF to undertake a pilot investigation into successful strategies for stroke survivors to walk independently at home and in their communities.

The Out-and-About Trial, of which Annie is Chief Investigator, builds on an earlier pilot study funded by the NSF. The initial NSF study now involves 20 community teams and 300 stroke survivors.

Dr McCluskey is a member of the NSF Clinical Council and a Post-Doctoral Research Fellow at the University of Sydney. As a trained occupational therapist, she has a keen interest in research that leads to improvement in the practical lives of
stroke survivors and their families.

Best practice guidelines for stroke rehabilitation recommend access to walking training with a physiotherapist and travel training with an occupational therapist – yet fewer than 20 per cent of stroke patients receive the recommended number of sessions in their local community.

The Out-and-About Trial compares different types of education and coaching delivered to rehabilitation teams in the community.

Uniquely, the project also uses personal global positioning systems (GPS) to assess how far and how often people go out. Annie says use of the GPS is quite revolutionary in this context – previous tools like pedometers didn’t allow researchers to measure journeys and distance when riding in cars or on buses. Being able to map the sort of journeys taken by people with stroke during a day, including visits to venues like libraries or local shops can tell a lot about quality of life and independence,” she says.

NSF continues to provide seed funding for life changing research programs – like the Out-and-About Trial. We take this opportunity to thank donors who have financially contributed to these important projects.

Neuroplasticity is the term given to the brain’s ability to change after experience the idea that the brain is malleable and even “plastic”.

This understanding of the brain’s ability to adapt to new experience is relatively new—previously it was widely believed that the brain did not adapt, that any damage or injury was irreversible and that changes to the brain were impossible after infancy.

The term “plasticity” refers to the possibility of forming new cells and new connections after an event such as stroke. While it is still a hot topic of scientific research it is a subject that we expect will be of great interest to our community of stroke survivors.

Here, survivor Allison Bakker gives us her own review of a fascinating book, Norman Doidge’s The Brain that Changes Itself. Alison believes that she can try to retrain her own brain post-stroke by focusing activity and movement on the parts of her body that were most affected. It’s tiring and frustrating but worth it, she believes.

Book Review by Alison Bakker

Norman Doidge has written an amazing book about neuroplasticity. The simplest definition of neuroplasticity I found was by Leigh Sales on the ABC’s Lateline program: Neuroplasticity means that, “Brains can build new connections to compensate for injury or disease”.

That means to me that your brain can do the old things in a new way. In his book, Norman Doidge explores different therapies that use the brains neuroplasticity to recover from injury.

One therapy specifically for stroke-affected folk is called Constraint Induced Movement Therapy (CI Therapy) devised by Edward Taub. Basically, as far as I understand it, this involves intensive practice with your stroke-affected side to the exclusion of your unaffected side.

So your unaffected side is constrained, usually with a mitt or sling. By practicing new movement, getting better and better at it, you are reprogramming your brain to do the old tasks through a new pathway bypassing the old damaged one.

Some of the results have been amazing. The book discusses one case involving a man who recovered fine motor movement in his hand and balance skills 45 years after his stroke.

And another story is about a boy who stroked in-utero and had no use of his left hand. He did CI Therapy aged four and can now play baseball with his friends.

I heard Dr. Doidge speak at the Melbourne Writers Festival recently. His words were interesting but just as interesting were the questions that followed from the audience.

Although his theories on neuroplasticity were science-based, what was interesting was the hope he created in the audience. Brain injury is usually devastating. It affects people physically, mentally and psychologically and alters lives in irreversible
ways.

Maybe, looking at neuroplasticity, people can see hope for themselves or their loved ones. The questions involved many different types of brain injury, from acquired brain injury to cerebral palsy and even mental illness.

Dr. Taub’s CI Therapy clinic is in, Alabama, USA. Looking at the website the application demands passion and commitment from the potential patient, unwavering determination and the motivation to work hard.

The rehabilitation is 6 hours a day for 10 to 15 days and the cost from Australia would, I imagine, be prohibitive for most of us.

I can’t afford to go Alabama. I have a family to run; cricket, swimming lessons, part-time work and the rest but I will take on some of these principles as I can.

To improve my fine motor skills I’ve started to unpack the cutlery tray from the dishwasher with my affected hand, using my hand to get all cutlery round the right way before putting it in the drawer. It’s a pain really—and it annoys me—but I keep at it because I can feel it working and doing good.

Dr. Doidge’s exploration of neuroplasticity reminds us of good, old fashioned principles. Perseverance, persistence, doggedness, and practice, practice, practice!

And the way I figure it, I’ve got 40 more years of unpacking the dishwasher to go, that’s 40 years of hand rehab, so things really should improve, eventually.

Alison Bakker is a stroke survivor and sometime writer. She lives in Melbourne with her husband and two children, and works part time as a registered nurse.