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.”

This email is from Pete. With permisson, we have included Pete’s email and video as he should tell his story in his own words.

“I will start this email with my background… At nineteen I joined the army, at 21 I got diagnosed with Hodgkin’s Lymphoma, It took one year to be clear and then decided Australia would be a good new start, I spent four years working on my house thinking that I would have a brilliant life, then one day I woke up in Charlie Gardener Hospital only to see on the wall was a picture of a wheelchair and a care plan, I could not move any muscles only my head, I spent two days looking around the room, to make my eyes move left and right, I was so scared. I am now presently at shenton park on a rehabilitation programme, I can now move my left arm and stand for 2 minutes un aided, I can talk, but I have to wear a swimmers nose clip, as the air escapes through my nose, I don’t know how to help others but I will keep in touch with my progress. I don’t know how I will do, but everyday I work my hardest, down to my last breath to talk to my darling Jade, who has never given up even when the doctors said I will never move, I hope they think twice about telling families the horrible news, when they don’t know the brain is so powerful, If the will is strong, I just hope I come out of this soon, because I need my life back, I was so fit, now I cant do one sit up, where I used to do 50. Sometimes I feel like my life is like forest gump “what next”. I hope this gives you an idea of who I am and if I can help theirs I will send a video of me at my stage I am at now.

Yours sincerely

Not locked in Pete”

See Pete’ and Jades Video

Image via Lifestylefood.com.au

Food for Thought Sydney - 13 October

Experience the magic that happens when eight elite chefs join together to create an unforgettable and thought provoking menu.

Join Adriano Zumbo – Adriano Zumbo , Alessandro Pavoni – Ormeggio at The Spit, Spiedo, Colin Fassnidge – Four in Hand, Giovanni Pilu – Pilu at Freshwater, Leanne Beck – Sweet Infinity , Riccardo Momesso – Sarti (Melbourne), Richard Ptacnik – Otto and Soren Lascelles –  Assiette for this prestigious event at Doltone House on the stunning Sydney Harbour.

We will be putting up a series of recipes from the fabulous chefs ckooking at our Food for Thought Sydney event. This week we celebrate the genius that is Alessandro Pavoni - Ormeggio at the Spit and Spiedo.

www.foodforthoughtsydney.com.au

Ocean trout crudo, squid mayonaise, crispy mandarine, sea lettuce

Ingredients or components for 10 portions

CURING MIXTURE leave for 45 min then wash
Sugar, cane 20 g
Sea salt 80
Lemon zest 10 g
Fennel tops 10 g
Mandarine dressing 50 g
Squid ink Mayonaise 30 g

Recipe
Mandarin freeze dry 10 g
Sea lettuce dry 4 g
Ocean trout 1.2 kg
Ocean trout roe 20 g
Lemon balm 30 g

Preparation
Wash the trout fillet from the curing mixture
Slice the trout in fine slices
Place the slices on a plate
Dress with the mandarine dressing
Add some squid ink mayo dots
Add the trout roe
Add lemon balm
Add freeze dry mandarine
Finish with a dust of sea lettuce

Finances can be a huge issue after stroke. They are added to already significant burdens … disability, grief, mortality, potential job loss and so much disruption to normal life.

I found it difficult, as I think earning a wage was a huge part of the adult I am.  I’d been paying my own way since I was a teenager, and to suddenly be dependant solely on my partner impacted my self-worth.  I wasn’t the main breadwinner in my family as I had young children so I only worked part-time.  I can’t imagine how it would feel for a breadwinner, the added burden of family dependence. What an impact it would have on such things as self-esteem, guilt, self-worth, disappointment and frustration.

Then how to negotiate Centrelink, insurance companies with income protection or death and disability insurance, superannuation, life insurance and the rest? Hard enough to deal with at the best of times without the added difficulties that come with stroke … cognitive problems, fatigue, depression - you know them all.  I have no easy answers, but here are some things that worked for me.

Use people. Use the resources you have. Most people I knew were just itching to help us.  People feel helpless when confronted by a major health crisis and would love something practical to do.  Any accountants you know; bankers, maths teachers or just people who are good with figures. Lawyers, business people, people in your work place, human resources and friends on disability pensions … allow people to support you and you will find most people will.

The banks I contacted had hardship provisions in case of serious illness.  Also, check your superannuation account, sometimes there is loss of income or death and disability insurance attached.
In the end for me I had income protection insurance that I hadn’t realised through my superannuation.  The insurance company was very helpful in getting me back to work and I had my own personal OT … I suppose it was in their best interest to get me working again! It certainly helped.  I felt better; I was contributing financially to the household and working towards getting back to work.

Here are a couple of websites that I have found useful:

The Australian Tax Office (ATO)

The ATO has a ‘People with Disabilities’ service that can accommodate language or cognitive difficulties. (Phone 13 28 69)

You can also nominate a representative for the ATO to act on your behalf.   They don’t offer financial advice but recommend www.financialcounsellingaustralia.org.au as a resource.  And www.asic.gov.au to check if your financial adviser is licensed, i.e.: tax agent, financial advisor, accountant or professional association.
www.ato.gov.au

Centrelink
They have helpful services and can accommodate stroke survivors and/or carers. They have a Financial Information Service (FIS) which is free and a Compensation Recovery Team that can assist with claiming compensation should you wish to, although it may impact Disability Pension entitlements.
Centrelink 13 27 17
FIS 13 23 00
www.centrelink.gov.au

Image Via Heraldsun.com.au

IT’S National Stroke Week and the message the Stroke Foundation wants to get across is that one in six Australians will have a stroke.

It’s a statistic I didn’t think about until my partner had a severe stroke at the age of 54.

I’d foolishly imagined that strokes were the sort of thing that happened to people of my parents’ generation.

In the past year, though, I’ve met people from all walks of life who are trying to deal with the damage done by strokes - from toddlers to the elderly.

My learning curve took a steep climb when Peter was transferred from the acute stroke ward to a rehabilitation facility. There were four men in his ward, all in their 40s and 50s, and all with severe brain damage caused by strokes.

In the course of a single day they’d been transformed from vibrant, intelligent, independent and productive people into men with serious disabilities.

If any good can come from our experience it’s to help increase public awareness about the early warning signs of stroke. There is a wide range of information on the Stroke Foundation’s website and I implore you to read it at www.strokefoundation.com.au.

Apart from our own considerable problems, I’ve also learnt about the frustrations of many of those who work to help us.

Scarce resources and a confused and confusing health system see physiotherapists, occupational and speech therapists severely hampered in their continuing efforts to rehabilitate stroke victims.

While we’ve got to know and admire many therapists in the past year, it strikes me that there are some professionals particularly hard done by - those who don’t get to learn about the fruits of their labour.

I recall a British nurse in the emergency ward the night Peter was admitted. During his lucid moments Peter and the nurse bonded over soccer and their common love of Manchester United.

The nurse knocked off later that night hoping that Peter was going to be OK and that she’d never see him again.

Some days later the nurse recognised me in another part of the hospital and asked after Peter. I pulled back the curtain to Peter’s bed and tears rushed to the nurse’s eyes.

Peter’s passion for soccer and most other things had deserted him.

The nurse’s compassion made me wonder how many people pour their hearts into their work without ever expecting to know the outcome of their efforts.

It must be awfully hard to turn off emotionally after become intimately involved with the life-and-death dramas of strangers. We all want to know what happens next in any TV drama - but these real-life workers are meant to stifle any ongoing interest in the outcomes of their work.

The lack of feedback seems unfair to them emotionally, and unwise in terms of opportunities lost to learn from experience.

Just last week I met another such frustrated worker - a State Government employee assigned to help us navigate the treacherous waters of Victoria’s WorkCover system.

When I thanked him for his help, he simply said: “Please, just let me know what happens”. I was taken aback.

After all, we recognise the value of feedback in so many other fields of endeavour.

Why aren’t these workers getting it? Money alone can’t compensate for the blood, sweat and tears these good folk are pouring into their everyday jobs.

Article published in Herald Sun and Heraldsun.com.au

To read more articles from Jill Singer.

Know your numbers blood pressure check

This week we ran a Know your numbers free blood pressure station at Southern Cross Train station in Melbourne, for National Stroke Week.

We received this email from Linda and we wanted to share with you all.

I want to thank you, on Monday you had a free Blood Pressure check at Southern Cross Station, I thought why not check. To my disbelief the reading was 169/106 I was floored and thought no way I have always been 110/70 low. Two days later I wanted to prove you wrong so I went to my GP for a further reading, he said Linda you BP is 170/88 needless to say I was given medication for three weeks with a chage of habit ie diet & fitness. I wanted to say that Angels  made me take your test and get a wake up call and possibility that you have saved my valuable life. Keep up spreading the word as I did when I went back to work, thanking you Linda.

Find your closest location for a free blood pressure check.

Note: the image provided is not of Linda, but is taken at Southern Cross Station on the day.

Meet Sarah Cullen
At just 14 Sarah collapsed with a stroke during a school game of hockey. After an agonising challenge to regain her motor and speech skills she suffered a second stroke at the tender age of 16.

The two strokes threatened to cut short her education, independence, and dreams of a career. But fear gave way to determination – Sarah finished year 12 and has a degree in science.

“I have come to see my stroke as a gift. Nobody would ever want to have a stroke but it has made me do and experience things I never would have otherwise.”

Sarah is one of the stroke survivors whose strength and courage will be celebrated at the Food for Thought Sydney event.

More about Food for Thought Sydney

Eight life-size, thought provoking portraits of stroke survivors will be featured at an amazing dinner hosted by Joanna Saville, co-editor of the SMH Good Food Guide and the Director of the International Food Festival and featuring eight of Sydney’s best chefs.

Food for Thought combines the best food and photography and celebrates the lives of stroke survivors. As one survivor said “I live my life. Not the one that stroke gave me.”

Join Adriano Zumbo, Alessandro Pavoni, Colin Fassnidge, Giovanni Pilu, Leanne Beck, Riccardo Momesso, Richard Ptacnik and Soren Lascelles as they combine their creative expertise to serve up an unforgettable seven course degustation menu, with complementing wines.  During the dinner guests will be treated to a cooking demonstration by each of the chefs who explain how to recreate their dishes.

Food for Thought is being held at Doltone House in Pyrmont Point NSW on Thursday, 13th October 2011.

www.foodforthoughtsydney.com.au

Top stroke clinicians and scientists from around Australia and the world will gather in Adelaide from the 14-16th of September to discuss the latest breakthroughs in stroke research.

The Stroke Society of Australasia’s 22nd Annual Scientific Meeting, Challenges in the New Millennium: Prevention, Thrombolysis and Repair, hosts a range of keynote speakers who will be bringing their latest research findings to this annual symposium.

Among the topics covered will be the link between stroke and sleep apnoea; fairness of access to rehabilitation services; the role of nursing in stroke recovery; yoga in stroke therapy; the use of IT in stroke diagnosis and rehabilitation,and a stem cell therapy workshop.

Conference convenor Associate Professor Simon Koblar said the meeting brought together stroke professionals who were at the leading edge of stroke research.

“This conference is about sharing the latest ideas and research that will help us overcome stroke in 2011 and beyond,” Professor Koblar said.

Stroke is Australia’s second biggest cause of death and a leading cause of disability. Around the world, someone dies from stroke every six seconds.
The conference, held during National Stroke Week, is at the Adelaide Convention Centre.

A full program is available at www.strokesociety.com.au

Every 6 seconds someone dies from stroke –know your stroke risk and live

1 in 6 people will suffer a stroke in their lifetime. Every one of those people are someone’s sister, brother, wife, husband, daughter, son, partner, mother, father … friend. Behind these numbers are real lives. Do you know your stroke risk?

Every 6 seconds someone, somewhere, regardless of their age or gender will die from stroke. Strokes can happen to anyone but many strokes are preventable. The National Stroke Foundation is urging all Australians to follow these 6 steps to reduce the risk and danger of stroke:

1.    Know your personal risk factors: high blood pressure, diabetes and high blood cholesterol
2.    Be physically active and exercise regularly
3.    Avoid obesity by keeping to a healthy diet
4.    Limit alcohol consumption
5.    Avoid cigarette smoke. If you smoke, seek help to stop now.
6.    Learn to recognise the warning signs of stroke and act FAST

F.A.S.T is an easy way to remember and recognise the signs of stroke:

• Face – Has the person’s mouth drooped?
• Arms – Can they lift both arms?
• Speech – Is their speech slurred? Do they understand you?
• Time – Time is critical. If you see any of these signs, call 000 now

National Stroke Foundation CEO Erin Lalor says that by following these steps the rate and severity of stroke can be dramatically reduced.

“Stroke doesn’t discriminate, anyone can be affected,” Dr Lalor says.

“But everyone, no matter who they are, can lessen their chance of stroke, disability and death by understanding and then reducing their own risk of stroke.”

We encourage all mebers of the stroke community to hold an activity during Stroke Week. www.strokefoundation.com.au