Just because we don’t want to talk about it doesn’t mean it will go away! Incontinence can be a problem for people at different times in their life, for different reasons and it can certainly be an issue after stroke.

Here we’ve taken some information and tips from one of the National Stroke Foundation’s fact sheets: ‘Incontinence after stroke’. This resource is one of 10 available from our website and can be downloaded from: www.strokefoundation.com.au

Stroke can affect bladder and bowel control in many ways but there are steps you can take to make this less of an inconvenience or embarrassment in your daily life. The most common incontinence problems include:

• Frequency. Needing to go to the toilet very often.
• Functional incontinence.

Trouble getting to the toilet on time or at all. Physical or communication difficulties after a stroke can make it harder to get to the toilet on time.

Sometimes clothing can be hard to get undone or toilets may not be close by.

• Urge incontinence. A sudden and uncontrollable need to pass urine.
• Urinary retention. Not being able to fully empty the bladder or holding an increasing amount of urine in the bladder.
• Faecal incontinence.

Incontinence can be prevented, treated, better managed or cured and the first step is a full assessment by health professionals. For some people it might be hard to talk about incontinence but it is important you get the best help you can. There are a number of health professionals who can help you improve your continence.

These include a doctor, urologist, occupational therapist, physiotherapist and dietitian. Starting with your doctor is always a good first step.

The NSF government relations team has been working with chronic disease partners, the federal government and the food industry over recent months on proposals around better labeling of everyday food products. Health groups are united in calling for a better system of labeling to ensure that the public can easily tell what is in the food on our shelves. At the moment the focus is on the design of labels for the front of food packaging that would make it easier for people to make healthy food choice. There is debate around whether this should be a mandatory feature or not. What do you think?

Would you make use of simple fat, salt and sugar information on the front of food packaging to help you decide which food to buy?

See our poll on our Stroke Foundation Facebook wall.

We think everyone benefits from a spot of gardening this time we’re all about winter.

But don’t just take our word for it – we found this article on the terrific UK website Thrive www.thrive.org.uk

Thrive patron and president of the Royal College of Physicians in London, Sir Richard Thompson, recently said: “I have, for some time, thought doctors should prescribe a course of gardening for people who come to them with depression or stroke.”

Sir Richard went on to say: “Drug therapy can be really expensive, but gardening costs little and anyone can do it.” He said gardens were “restorative environments” that provided many benefits.

“I always wonder why people go to the gym when there is a ‘green gym’ outdoors for us all, and what’s more it’s free. Gardening burns off calories, it makes joints supple and is fantastic exercise. Gardening as a physical activity has been shown to be helpful in the treatment of anxiety, depression and dementia.”

So let’s get out (or in) there and dig!

Winter planting

While winter is seen as a resting or dormant period in the garden, there are quite a few varieties of vegetables and flowers that you can grow. Here are some of the most popular:

• Asparagus
• Lettuce
• Cauliflower
• Broccoli
• Spinach
• Mushrooms

Bulbs and perennials like lilium, gladioli and lily of the valley perennial phlox are also good to plant.

If you are in a small living space and don’t have a garden – remember that your indoor plants might need a bit of extra care during winter. Try to keep your plants away from cold drafts and from heaters. In general, houseplants require less frequent watering during the winter months than in spring and summer and most won’t need fertilising.

GENERAL practice staff are being urged to encourage their nonclinical employees to take part in free training to promptly identify patients with suspected signs of impending heart attack or stroke.

Reception staff are usually the first to see patients presenting with symptoms of severe chest pain, and an online training tool has been developed to help non-clinical staff identify such patients.

The triage strategy, called BeAWARE of warning signs of heart attack and stroke, is a tool put together by the Heart Foundation and National Stroke Foundation.

Heart Foundation CEO Dr Lyn Roberts said reception staff are the eyes and ears of general practice. “For this reason it is vital reception staff are trained to appropriately identify and deal with patients presenting with the warning signs of heart attack and stroke, so they can make potentially life-saving decisions,” she said.

A Heart Foundation study found 15% of patients who experience severe chest pain attend their GP surgery or call a health professional, rather than call 000.

Research has shown nine out of 10 practice nurses have had patients present with heart attack warning signs rather than calling an ambulance.

On completion of the module, the practice receives a resource kit. To register, visit Heart Foundation online learning

Article originally published in Medical Observer, National 22 Jun 2012

A major stroke in July 2011 stopped Ade Djajamihardja and his partner Kate Stephens in their tracks. The couple from Melbourne had been running their own successful film and television production company since 2007, with work that took them around the world. When they weren’t travelling their lives were just as hectic: 12-hour working days and longer were a regular part of their life.

Ade had suffered a stroke in 2006. It left no permanent damage to his body but it was, the couple says, an unexpected wake-up call. Ade’s blood pressure was dangerously high and his lifestyle, he says, “could have been better”. With no permanent damage Ade and Kate set about making significant changes to their lives: exercising, losing weight, eating better and stopping smoking.

The slip in efforts came gradually, Kate says, and by the time of the stroke last year Ade was the heaviest he had ever been, the most stressed he had ever been, and bad eating habits had developed again. We had not had a holiday in six years and Ade had no idea what his blood pressure might have been. It was high, they found out later.

Ade spent six months in hospital, with a great deal of time spent in intensive care. He was not expected to survive. He underwent brain surgery to reduce the swelling in his skull and was placed in an induced coma for some weeks. It was a long haul back to the couple’s home in beachside Melbourne but after a stint in rehabilitation, Ade was home.

On 10 December, on Ade’s 43rd bithday and on his first day leave from hospital, Ade and Kate married on the front porch of their small flat near the water - Ade in a suit, tie and wheelchair and Kate in a simple and elegant dress.

“It was just so important to us both that we were able to be home together again, that was all that mattered,” Kate says.

Since coming home with complete hemiplegia on the left side of his body, Ade can now walk 15 metres, assisted. This has been the result of extensive home and centre-based physiotherapy and many hours of hard work by Ade, as well as Kate, and much of it paid for privately.

“Getting even this far has been a full-time job,” says Kate, who is now a full-time carer.

“But we have been lucky because our love is so strong and that has sustained us. That and Ade’s sense of humour. He didn’t lose one ounce of his humour.”

It will be some time before the wheelchair is put away completely, but the couple is hopeful that Ade’s recovery will keep progressing, Ade and Kate believe that a positive attitude and belief can make miracles happen. They are working on a media you-tube channel which will focus on health and well being.

Ade has a renewed passion and purpose for his life, Ade and Kate are both keen to use their media skills and passion to inspire others.

The ability to dress and groom yourself is very important to many people. Here is a range of equipment which can be used by people to facilitate independence in these areas.

Dressing aids

Before considering equipment to assist with dressing, consider the type of clothing to be worn. Some clothes are easier to don or remove, such as a t-shirt or polo shirt without buttons, or pants with an elastic waist rather than a zipper. There are also suppliers that make modifies clothing that may be easier to don or remove. An example is clothes with Velcro fastenings instead of buttons or zippers.

Stocking, sock and pantyhose aids may be helpful for people who have difficulty bending down to reach their feet. The clothing item is pulled over a flexible plastic gutter, and long cotton tapes are used to pull the plastic gutter up, bringing the clothing item with it. Special aids to assist in putting on compression stockings are also available.

A dressing stick is a stick with a hook on one end. It can be used to push off or pull on hard-to-reach items of clothing. Loops sewn onto clothing can make it easier for someone to use a dressing stick, by providing something for the stick to hook on to.

Long-handled shoe horns may assist with putting shoes on by reducing the need to bend.

A button hook can make doing up buttons easier for people who only have the use of one hand, or people who have limited hand function. Button aids are used by passing the aid through the buttonhole to catch the button and then pulling the button back through the hole.

Elastic laces stretch and can remain tied up while putting on/taking off shoes. Spring lace fasteners may also be used to firmly hold the laces together, and can be operated with one hand.

Shoes with velcro fasteners may be easier to fasten for people with limited hand function.

Grooming aids

Long-handled combs or brushes can assist people who have limited arm and shoulder movement.

Mounting equipment, such as hair dryers, can be useful for people with only the use of one hand, coordination difficulties or limited hand function and can be mounted using suction caps.

For people with limited hand function, a universal cuff may be used to enable them to hold items such as brushes and razors. A universal cuff is a Velcro strap which wraps around the hand. The object is placed in a tubing pocket so there is no need to hold it with your fingers.

Electric razors and toothbrushes may be easier for some people to use as they can reduce the amount of hand and arm movement required. Long-handled nail scissors can make reaching the toes easier.

If you have any questions about assistant living equipment call 1300 885 886 Independent Living Centres Advisory Service, they can discuss your needs with you and make suggestions.

StrokeConnect also has posts about equipment if you have upper mobility limitations and need ideas such as a hair-dryer.

Helen a memeber of our Facebook community has posted: Helen Vasicek as posted: incase you have never heard of the Smart Arm i would like to say i was a part of their trials and found it to be very good if used in all stroke hospitals www.uniquest.com.au

For more information www.ilcaustralia.org.au

This article was first published in the Brain Association of Queensland Synapse magazine. www.synapse.org.au

Using technology to aid in stroke recovery

StrokeConnections spoke to Southern Health speech pathologists Gabrielle Writer and Jaime Cosham share with us their thoughts on iPads as rehabilitation tools. Please note though, Gabrielle and Jaime say this is not the most suitable communication device for everyone. They recommend a speech pathology assessment before making an investment as iPads are not a “onesize- fits-all” piece of equipment.

How can iPads be used as a device for communication for stroke survivors?

iPads can be a fantastic option as a communication device. They are light weight and portable, affordable and very ‘in’ right now, making them socially acceptable. They allow non-verbal communication via email or messenger applications (‘apps’) for people who can write and spell. An app is a computer program that is downloaded onto your iPad or smart phone.

There are a large number of alternative and augmentative communication (AAC) apps available, ranging in cost from completely free to several hundreds of dollars. There is a variety of types of AAC apps, for example picture or symbol-based, where a word or phrase is spoken when a picture is selected; text to talk where the person writes or types in a word or phrase to be spoken, and combinations of both.

What role can they play in therapy?

Specific therapy apps can be used in individual and group therapy, and used for extensive home practice. Suitable apps can be used to provide the person with auditory and/or visual feedback, enable self-monitoring and measure progress.

There are a variety of great apps therapists can use: for rating/measurement improvements, as a fluency rater, sound level meter for measuring volume of voice, etc.

How have you found stroke survivors respond to using an iPad?

Many love it and have found the technology of the iPad itself quite easy to pick up, even if they have not had a lot of ‘technology’ experience. Feedback from clients has included that the iPad is ‘motivating’ and ‘enjoyable to use’. We have had reports of increased family involvement in a client’s home therapy practice, as all the grandchildren wanted to be involved with the iPad!

On the other hand, there are some people who have had difficulty using the touch screen aspect of the iPad due to problems with manual dexterity/ dyspraxia.

Kingston CRC client Margaret using the iPad with Southern Health Speech Pathologist Jaime Cosham.

Will they be accessible enough? Is the price restrictive?

The price is reasonable compared with other communication technology. There can be issues with the process of using iTunes for accessing and downloading the apps. The user definitely needs to have some degree of computer know-how and access to WiFi or another computer for this, or a support person who can assist them.

There is such a huge array of apps and this can be overwhelming and confusing. Again there needs to be someone with knowledge and experience involved to find suitable apps.

What are the benefits of this technology?

It can be modified to continue to meet each person’s needs if their condition changes It may enable increased social “connectedness” with email, video calling and access to the internet.

Other features are available to assist in activities of daily living include a calendar, alarm clock, daily reminder lists, calculator, and it can provide portable entertainment (music, videos, games, photos etc).

Alison Bakker: Life after stroke

What happens next, after discharge from rehabilitation; when you’re home at last but with the big wide world looming and no further support from your hospital?

I’d been working in public hospitals for 25 years before I had my stroke so I knew how the system worked, which helped. I was fortunate. But what about the people without those connections, without the family close by, without transport or computer access? Interestingly, I’ve never met a stroke survivor who hasn’t had ongoing needs. I’ve discussed this with people I know in rehabilitation. We saw the need for something more. A resource months or even years later, like a stroke nurse.

So I was interested when listening to the ‘Health Report’ on ABC’s Radio National. They had a fascinating story on rehabilitation after stroke. The host, Dr Norman Swan, interviewed Professor Anthony Wars, a neuro rehabilitation specialist at the University Hospital in North Staffordshire, UK.

What sparked my interest were his comments on life for stroke survivors after they had been discharged home. “What we’re tending to lack at the moment is ensuring that people are followed up properly,” Professor Ward said.

He had just completed a pilot study in which a practice nurse had assessed people on 11 criteria for such things mobility, spasticity, pain, continence, mood, cognition and how to prevent further strokes.

“It was a good way to introduce the whole question about life after stroke, and in particular the areas that were of greatest interest were relationships with families and returning to activities,” he said.

After people were assessed they would then be referred to the relevant service. Returning to life after stroke isn’t that easy. I went from being a fully functioning mother/nurse/wife to a person living with a disability in four short months. Not a lot of adjustment time! It was a physical, cognitive, and emotional rollercoaster and it took an awful lot of doing for both me and my family.

When I look back, my expectations were so unrealistic. To have had a stroke or practice nurse see me after I was home to address some of my remaining issues would have been useful. To help readjust my expectations, tell me what to expect next and help with finding specialist help like a good physio, occupational therapist or podiatrist.

As it was, I chanced upon a lot of the stuff that I would need. Like a great neuro-physiotherapist. Word of mouth was also useful from other stroke survivors or carers and it was reassuring to know I was normal.

The National Stroke Foundation has also been a great resource with its online Fact Sheets and the StrokeConnect Online forum. I’ve learnt so much on the forum, such as sticking my hand flat under my pillow to stop spasticity at night or cutting down on caffeine for fatigue prevention.

So if you have got some ideas on improving stroke care, the National Stroke Foundation is conducting survivor/carer forums in July in most capital cities, to find out what we think and to define its priorities for the next five years.

They want to hear our first-hand experiences of stroke. Come in and have your say, give your perspective and your ideas - because they are invaluable.

For the forums in July, I think Professor Ward’s stroke practice nurse is great idea both for an initial assessment and as an ongoing resource… that would be my two penneth worth!

To become a StrokeConnect member please call StrokeLine 1800 STROKE (787 653)

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.

On 4 August 2012 stroke survivor Dan Englund will embark on a 1000km run to raise funds for and awareness of stroke prevention. This is his story.

Hello Everyone,

My name is Dan Englund. On May 16 last year I joined 60,000 other Australians in having a stroke. I am 39 years old and an avid runner for years. I had no known previous medical reason to have a stroke. After 3 days in the Wesley Hospital I was told that I had a hole in my heart since birth that allowed a blood clot to pass through and caused an ischemic stroke.

In my next few weeks of rehabilitation and surgery I was amazed how diligent and professional the staff at the Wesley and Cannossa Hospitals were in making sure that I not only recovered but excelled in my recovery. They taught me that if you put in the effort your rehabilitation will pay off.

I came home from Brisbane in July last year to once again do outpatient rehabilitation. I so badly wanted to run again, that the fear of not doing it became greater than the fear of what would happen if I did. I ran my first run in August and accomplished 6.5 km. I then decided what most of us survivors do, “To beat this stroke.”

I have come up with an idea to run from my home in Emerald, Qld to Brisbane. My family and I will leave on August 4 to run a 1000 km. The same distance I needed to travel for my treatment. I want to show everyone who has had a stroke that I am a proud survivor too. If you continue the fight the battle, it will be won. I would like to also tell everyone else I meet that a stroke is not for certain people. Anyone in the world is able to suffer just like us. I would like to educate the public on how to reduce their chance of getting a stroke and know the signs of someone who is having one.

With your personal, educational and financial help I would like to share “Our” stories to the country and the world. We will be launching the National Stroke Week celebrations at the Wesley Hospital on September 10 and would love for you all to meet me there. Let’s set stroke awareness on fire this year.

Yours truly, Dan Englund

To donate money and support Dan in his journey 1000 km journey visit his fundraising page:Dan Englund

The National Stroke Foundation recommends that you seek the advice of a healthcare professional before embarking on any strenuous exercise.

An eye test to identify people who are at high risk of stroke may be just around the corner, according to researchers from Zurich who hope the non-invasive test will one day prevent stroke in some patients.

The test known as ocular pulse amplitude (OPA) can accurately detect
carotid artery stenosis (CAS), a proven risk factor for stroke, the authors wrote in Ophthalmology.

Using a device called the dynamic contour tonometer to measure the OPA of 67 people thought to have CAS, the researchers found the most clogged up arteries belonged to patients with the lowest OPA scores.

“The OPA could be shown to decrease with high degrees of CAS in a clinical setting,” the authors said.

“The study provides proof of principle that the OPA is reduced in patients with CAS and may be used as a noninvasive, inexpensive, readily available, and unconfounded screening parameter to detect CAS and possibly to reduce the incidence of stroke.”

The authors hoped the OPA would one day be included as a general screening tool for CAS during routine ophthalmic examinations to increase the probability of finding patients at high risk of CAS.

This article was first printed in Neurology Update June 26 2012