message from scott newsletter€¦ · 01/04/2015 · please bring a plate of food or a gold coin...
TRANSCRIPT
MESSAGE FROM SCOTTWelcome to the first edition of Kia Māro, Enable New Zealand’s community newsletter. The Maori phrase Kia māro te ihu o te waka means keeping the prow of the waka pointing in the right direction. We like this as it serves as a friendly reminder to us, Enable New Zealand, to stay on course and to always ensure that the services we provide are pointing in the right direction.
Enable New Zealand has been at the heart of the health and disability sector for over 40 years, providing a range of services both nationally and to the local community. We recognise that the expectations of both the disabled and aging populations are changing and our aim is to lift the transparency and accessibility of services by being the gateway for community-based services that enhance and facilitate self-determination, empower decision-making and promote independence.
This newsletter is for the local community, informing you, of what we do, the services we provide and how we might assist with your needs. We are excited about some local initiatives that we will be rolling out over coming months, and will share more information about those in future newsletters. In the meantime I hope that you find our first edition informative, and on behalf of myself and all the staff at Enable New Zealand thank you for being part of our local community.
Scott Ambridge General Manager, Enable New Zealand
Enable New Zealand provides: Equipment, Housing & Vehicle Modification Services, Disability Information & Advisory Services, Needs Assessment Service Co-ordination, Spectacle Subsidy, Short Term Loan Equipment,
Wheelchair & Seating Outreach Services, Housing Outreach Clinic and Palliative Equipment.
AWARENESS DAYS THIS QUARTER
• April 2 World Autism Awareness Day
• April 7–12 Stroke Week
• May 29 World MS Day
• June Motor Neurone Disease Awareness Month
• June Bowel Cancer Awareness Month
• 15–21 June Elder Abuse Awareness Week
• 21–27 June National Volunteer Week
• 23–29 June Continence Awareness Week
• 28 June – 4th July Neurological Foundation Appeal
Do you want to go on the mailing list for this newsletter, or know somebody who would like to
receive it? Please send an email to [email protected]
NEWSLETTERISSUE 1 - APRIL 2015
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KIA MAROKia Màro te ihu o te waka
WHAT'S ON
PARENT TO PARENT AND AUTISM NEW ZEALAND
WAIRARAPA COFFEE SUPPORT GROUP
This group covers all disabilities and health impairments.
Please come and join the new Coffee Support Group on Tuesday, 12 April 10am–noon at St Luke’s Vestry, Greytown, Wairarapa.
This group will be meeting every third Tuesday of the month except school holidays. Drop in for as long or as short a time that suits you. Come and meet other parents of children with different abilities. Ask questions on issues you’re struggling with.
Please bring a plate of food or a gold coin donation to help cover the tea/coffee/food. Children are welcome.
Phone Debbie Malneek (06) 929 7004 Email [email protected] phone Shona/Sharyn (04) 569 9398 Email [email protected]
HEALTHY RELATIONSHIPS –
PREVENTING ABUSE AND BULLYING
Options in Community Living are running two courses called “Healthy Relationships – Preventing Abuse and Bullying.” These courses are for adults and run for 10 weeks. They provide practical tools to build resilience and to prevent violence and abuse.
The course and resources have been made by, and for, people with learning (intellectual) disabilities.
The courses will start late March/April.
www.kidpower.org.nz/healthyrelationships
Please phone Andrea on (06) 353 2243 or 021 713 190 if you are interested.
WORLD AUTISM AWARENESS DAY
2 APRIL
World Autism Awareness Day (WAAD) is on Thursday 2 April is looming. One of the main events that Autism New Zealand organises is Multicoloured Mayhem Day (MMD) which is primarily celebrated in schools and some businesses. This day is celebrated by honouring the differences of people with Autism Spectrum Disorders (ASD) by dressing up in multicolour to express the variety of ways the disorder presents itself. ASD affects people regardless of age, gender, race, culture etc.
Anyone interested in the Multicoloured Mayhem Day, please contact Autism New Zealand if you would like to participate/fundraise and to receive an information pack with posters and brochures, email [email protected]
WORLD MS DAY 27 MAY
There is a workshop on fair and equitable access facilitated by field worker Philippa Russell.
To be held on 27 May at the MS Society, from 10am–noon followed by a shared lunch. Address: 51 Waldegrave Street, Palmerston North. Phone (06) 357 3188.
A Levin meeting will be held in the afternoon, approximate time from 2.30pm. Details of venue and time still to be confirmed for Levin.
Please contact the office phone (06) 357 3188 for any further details.
GOT AN EVENT YOU WANT TO LIST IN OUR EVENTS/WHAT’S ON COLUMN? CONTACT VICKI OR BEV AT [email protected] OR (06) 353 5800 EXTN 5946.LIKE US ON FACEBOOK
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STROKE WEEK 7-12 APRIL
OUR STORY
For this newsletter we are focusing on stroke and the impact it can have on individuals and their families.
First up is a heartfelt personal story from a local couple affected by stroke, which demonstrates the importance of getting help quickly and also the power of remaining positive. (Their names have been withheld.)
This is a great example of how recognising the symptoms and getting help quickly made a big difference to the outcome. Also the positive attitude, although hard to maintain at times, has helped both partners cope with this event and its effects on their lives.
I was awake early and feeling excited. Off on holiday today, visiting family overseas. Checking the list for last minute to-do's, I glanced at the clock and remember thinking in half an hour we will be on our travels. Within a few minutes of those thoughts, our world was horribly turned upside down and inside out. I knew instinctively that the only travelling we were going to undertake that day, was straight to the local hospital... and step on the gas.
My husband was on the floor unable to move except for his right arm. I could see that it was a stroke, so quickly checked him and phoned 111 for an ambulance which thankfully arrived within minutes. About four hours after he was admitted I was in a state of shock, unable to comprehend all that was going on when a doctor ushered me into an office and told me that my husband may not make it through the day. If he did... there was no knowing at this stage what brain damage he had sustained. The reason? He had suffered a brain bleed stroke and unfortunately it was in a central part of the brain that was not easy to reach. They were doing all they could to stop the bleed... it was touch and go.
The next two or three days were a complete blur. Lots of tears, worry, uncertainty, panic even. The family rallied together to support each other and I can still see some of the looks on their faces as they tried to come to terms with what had happened to our loved one, what it meant right then and more importantly what was it going to mean in the future. I could not even comprehend the future. Mentally I told myself that if he was going to get better from this stroke we would just have to take one day at a time.
This was the start of a three and a half month stay in hospital for my man and I was there for him every single day. Sometimes I would return home smiling, other days I could hardly see to drive through the tears.
Not only was he paralysed completely down the left side, but he was also unable to swallow either fluids or solids without it going straight down into the lungs. He was fitted with a stomach peg for feeding. What followed were endless rounds of physio and speech therapy which started with him learning to sit up and get his balance. Once he had made a little bit of progress his eagerness increased and he became adamant that he was going to beat this "problem" and started setting himself goals. He achieved them all with our sincere thanks to the ladies in the physio and occupational therapy departments. It seemed an eternity but within weeks he was up on his feet in a harness and willing his left leg to "walk".
During his busy days in hospital what followed for me? What followed for our children and their families? It's really hard to explain as I think we all reacted differently. We took turns at propping each other up but were unanimous that we all had to be positive. After all, the stroke victim was being positive and achieving, we had to do the same. And so with our positive thoughts the days got lighter and brighter and we tried to resume a normal life. Looking back I can see that there were obviously days at a time when I was on auto pilot. It was such a huge learning curve looking after a patient with disabilities and I remember being scared and frightened when told that I could take him home for a trial weekend. I am not a nurse, but here I was being handed three days' supply of tablets and a whole car load of equipment, a crash course on how to set up the night time drip feed monitor and a bag full of bottles of liquid food for the five times a day peg feeds. All were waving goodbye... have a great weekend. I was so frightened I cannot even remember the drive home, there was so much information going round in my head. However we managed... after a fashion, but we managed. The next time
was a lot easier and so it went on until he was home permanently.
Family and friends were amazing. Helping hands were never far away and all I had to do was ask. It was hard at first but I did learn how to. I can't say we carried on as normal because by this time I had forgotten what normal was. Married life as we had known it together was gone. Yes we were still married and yes we were still together but there seemed so much "stuff" between us now. Disability equipment, medications and their effects, time, different routines and the inability to do things that we always used to do, (my husband was a whizz in the kitchen). It was a few weeks further down the track and suffering from extreme tiredness, I realised one day that I was now doing three jobs. 1) The same one that I always did, my part in looking after our home. 2) All the jobs that my husband did, the man things around the house. 3) Nursing my husband. In all honesty it was like having a wee baby to look after. His concentration span never extended past five minutes so I was forever updating, reminding and encouraging him. I also learnt that stroke victims in the early months sleep a lot.
Thank goodness for caregivers. We were allocated a lovely lady who is still his main caregiver today. I have always been a private person and took a while to get used to having someone come into the house twice a day. It was easier when I eventually convinced myself that there is no way I could do those jobs and still do all the others things that filled my days.
It was extremely hard for our children to see their dad unable to do all the things that he used to do with them. It was also tough on the grandchildren as they were all still very young and simply did not totally understand exactly what had happened – what a stroke actually was. I of course learnt very quickly what it meant. Life as we knew it before was 3
never going to return to exactly how it was. Things would be completely different from that day on, no matter how much progress he made. And yes, he had made tremendous progress, but unfortunately things have levelled off. He has been through a couple of bad patches but 99% of the time he remains positive. I too stay positive for him but some days (I think when the tiredness takes over), I can't help but reflect on what used to be. The physical and romantic side of our partnership. The days where you just want a quick cuddle and some reassurance that yeah, things are going to be fine. Or just to sit down together and have that important little discussion over a certain matter. Or help with a financial decision etc. Because of the absence of concentration, the lingering damage from the stroke, those things are not going to happen. Social outings with friends are now very limited. Our weekend outings where I don't have to do all the driving would be great but because his brain does not recognise that he has a left side, he will never drive again. Actually we often have a laugh together on our way out as it always seems like a major military manouvre. We have a check list before we leave the house and we usually have it all well planned. One day I may just write a book on disability toilets and disability parking. I certainly have enough information!
But that is our life now. We get up each morning and take what comes. Take it with a smile, because no matter what is going on in our lives, there is always someone worse off than you. It is important to continue on as normal as possible. Also try things, any thing, because if you don't try you will never know if you can.
WHAT ABOUT THE EQUIPMENT? This is the equipment that has been supplied. The first list was supplied by the hospital on discharge.
• Commode – still used every day by the caregiver to take him from the bed to the shower.
• Slide in bedside rail – used every day.• Box raise for lounge chair – no longer needed.• Peg feed night drip dispenser unit – no longer needed.• Over bath wash stool – no longer needed.• Slide board to transfer from wheelchair to the car – no longer needs this.
The second list has been provided by Enable New Zealand under Ministry of Health funding guidelines.
• Wheelchair and cushion – could not be without this.• Perching stool – used for 18 months until we moved house. Now uses a bar stool.• Bedside slide rail – cannot be without this.• Over bed (or chair) table. This he uses everyday to keep by him all the things he
needs like books, phone, pen and paper, drinks, newspaper. It is invaluable.• Shower chair – also a must for every day use.• Blocks to raise the head of the bed.• Quad stick – when he is able to walk a little. He now uses this to go to and from
the bathroom.• Ramp – used for a while until he learnt to master a few steps.• Over toilet frame – requires one every so often when we go away and there are
no handrails to use.
The guys in the stores were always most helpful and obliging and always offered to do everything they could to help and make life that much easier.
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Make sure you know the risks and can identify the signs of a stroke to minimise the devastation stroke can cause.
There are two main ways a stroke happens:
A clot blocks a blood vessel in the brain (ischaemic stroke). The blockage prevents oxygenated blood from reaching brain cells which cause cell death.
A blood vessel in the brain bursts (haemorrhagic stroke) and bleeding into the brain causes brain cells to die in the area of the haemorrhage.
Once the cells in the stroke affected part of the brain die, that part of the brain no longer works properly. Nerve cells (neurons) responsible for sending movement commands, receive sensory information and are responsible for seeing, thinking, feeling, remembering, communicating, and making decisions may be damaged. When this happens the brain cannot connect with the body, and the body’s ability to perform the tasks of daily living is affected.
The effects of stroke are few or many depending on the severity of the stroke, all are life altering.
• Paralysis – loss of sensation
• Aphasia
• Cognitive dysfunction - sometimes dementia
• Memory loss
• Vision impairment
• Behavioural changes
• Bowel and/or bladder function issues
• Sexual dysfunction
• Extreme fatigue and depression.
Some people make a very good recovery and return to their usual lives but many are left with disabilities for the remainder of their lives.
Who is likely to have a Stroke?
In NZ we have a one in eight chance of having a stroke, which can occur from the womb to the end of life.
• 25% of those who suffer stroke are under 65 years.
• In Pacific people it is 60 years.
• The mean age for stroke in Maori people is 56 years.
• In Europeans it is 73 years.
Although stroke happens largely to older people, anyone can have a stroke at any time during their lives.
NZ STROKE AWARENESS WEEK 7–12 APRIL 2015
How to reduce your risk of stroke
• Check your blood pressure regularly and follow any recommended treatment by your medical advisor.
• Take steps to cease smoking. There is help available in the community for this.
• Eat a healthy diet (limit fat, sugar and salt).
• Be physically active as often as possible (physical activity promotes a healthy brain).
• Target a healthy weight for you and once reached, take steps to maintain it.
• Limit your alcohol intake.
• Have your cholesterol level checked regularly and follow any recommended treatment by your medical advisor.
• Ask your medical advisor about atrial fibrillation (irregular heartbeat) and follow any recommended treatment.
• If you have diabetes, ensure you manage the condition well and have regular check-ups.
The effects on families can be devastating, particularly for those who are in the workforce and children.
Once you’ve had a stroke, you’re at a higher risk of another one. If someone in your family has suffered stroke then you have a higher risk.
Approximately 83% of stroke is preventable by reducing individual risk. Well over 8,000 people in New Zealand suffer a stroke each year. Addressing each risk lowers the chance of stroke
Think stroke – ACT FAST!If you think someone is having a stroke, do not hesitate – call 111.
The faster a stroke is diagnosed, the more can be done to prevent brain damage and devastating lasting effects. The sooner a person with a stroke begins treatment, the better their recovery. If a stroke is treated fast there is a better chance of saving a life.
Learn the international F.A.S.T. signs of stroke – you may save a life. See page 4 of this newsletter for the signs.
Stroke Central Region provides a community-based field officer service to support stroke survivors and their family.
If you can assist in your area during Stroke Awareness Week, please contact above.
Please call us on ph (04) 298 8585Email [email protected]
Visit our website www.strokecentral.org.nz
OVER 8,000 KIWIS SUFFER STROKE EACH YEAR
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There had been little information available about stroke or Ikura Roro in the Māori population. However, in March 2008 a study of stroke in New Zealand was published in the Social Policy Journal of New Zealand (Issue 33). The study focused on experiences of Māori stroke survivors and their care-givers. This article attempts to highlight some of the findings raised in the study and make them accessible to a wider readership.
For Māori, stroke is the third leading cause of death in New Zealand after cancer and heart disease and it is the greatest cause of disability in older Māori. The average age of stroke for Māori is 61 years. There are gender differences such that Māori women on average experience stroke at a later age than Māori men. The study showed that for Māori who experience stroke, the impact on the victim, carers and wider whānau is substantial.
When interviewed, Māori stroke survivors had different experiences in relation to their stroke but commonly described it as a devastating experience, because it was an event you could not stop, it made you physically ill, and you were left with ongoing consequences.
“It’s just something that came over me which I couldn’t control. I didn’t know at the time it was a stroke. At the time I couldn’t explain anything. I was useless. I was up in the world visiting Mars and the old ancestors... Stroke has been devastating... I don’t think I would like it to happen to anyone, even to my worst enemy.” (Male stroke survivor)
“I knew there was something wrong, because I had been to the hospital several times for congestive failure. I thought this was it.” (Male stroke survivor)
“I lost feeling in my right arm and I couldn’t think.” (Female stroke survivor)
“First stroke – easy recovery. The second stroke took me out, flat out.” (Female stroke survivor)
Caregivers also found the event frightening, but as an observer they had greater awareness of what was happening or what had occurred. Generally their immediate reaction was to seek medical help by calling an ambulance or taking the person to their nearest hospital. One caregiver who lived
some distance away from her father had a feeling that her father was unwell. On arrival at his place she found him on the floor and noticed “the drooping of the mouth and the confusion”. From there she had to make a decision between alternative health care or hospital care. She tried alternative health care for a month, and then when her father had not improved she sought medical care.
One caregiver said she had requested specifically that the hospital staff consult her on any major decision regarding the health care of her husband, because he had diabetes, but arrived at the hospital to find her husband about to be given shock treatment.
“The head surgeon yelled at me and said ‘No one told me that he was diabetic’.
Well, I said, you should have gone and checked. He was screaming at me, so I screamed back at him.” (Female caregiver)
One survivor said being stubborn and identifying as Māori provided the motivation to challenge the prognosis of being in a wheelchair for the rest of his life.
“Two days later I started to drag my way along. I tried to motivate myself to be able to lift myself without any assistance, after being told I’d be spending the rest of my life in a wheelchair. I suppose some Maori are stubborn.” (Male stroke survivor)
Taking control of the situation, having faith in one’s self, massage and exercise were typical responses of Māori stroke survivors to try to regain what they had lost and achieve as much independence as possible.
Generally, Māori caregivers believed that hospital and community services for Māori stroke survivors could be improved. This could be achieved by considering caregivers’ requests to be involved in their kin’s treatment, using the information caregivers provided, developing appropriate cultural assessments and assuring caregivers that residential care policies protected Māori assets, both individually and collectively.
Lack of social contact, isolation and feeling whakamā (embarrassed) were common experiences felt by Māori stroke survivors. For Māori, the most tapu or sacred part of the body is the head, and stroke can create
both physical and cognitive changes for the person concerned. The stigma of having had a stroke made some Māori stroke survivors withdraw from participating in many Māori and wider community activities. Their social world was reduced, and their only connection to the outside world was through their family.
One stroke survivor explained that previously she had been totally involved in her community and marae for over 45 years. Since her stroke she no longer felt comfortable going to her marae, attending local church services, attending important tangihanga (funerals) or allowing local people to visit her. She explained that, for her, stroke was similar to a mental illness, because your behaviour and emotions were unpredictable.
Her world was now focused on her family, and in particular her husband, because she no longer had confidence to be on her own.
An interesting personal experience, not part of this study relates to a kaumātua who suffered a stroke and lost much of his facility for speech. Overtime his ability to verbalise began to return but only te reo Māori, his first language. He said, in Māori that it was “too hard to find the pakeha words...” He never spoke English again.
The findings from this study give an important insight to stroke- Ikura Roro for Māori. Although the number of participants was small, the interviews with Māori stroke survivors and their primary caregivers provide an important insight into how Māori see and manage a stroke. These findings cannot be said to represent the experiences of all Māori stroke survivors.
This study raises the need for further research into Māori health and disability to improve their experience and health outcomes from stroke.
I acknowledge the study – Stroke: A Picture of Health Disparities in New Zealand: Lorna Dyall, Valery Feigin, Paul Brown, Mavis Robert. (March 2008)
By Hare Arapere, Kaupapa Maori Manager, Enable New Zealand
STROKE IKURA RORO
EXPERIENCES OF MÄORI SURVIVORS AND CAREGIVERS
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WEKA WEBSITE GIVES DISABILITY-RELATED INFORMATION
"WHAT EVERYONE KEEPS ASKING"
www.weka.net.nz
WEKA is funded by the Ministry of Health and is New Zealand's premier website for delivering national disability information.
The website includes:
• Contact details for disability information centres around New Zealand
• Suppliers of various items of disability equipment (including their contact details and links to their websites)
• Support services for disabled people, with the ability to break it down by region and/or service provided
• Resources available to disabled Maori• A free DVD Library where you can borrow disability-
related DVDs with the only cost being for their return• Disability-related news and events of interest to
disabled people• Disability-related information and assistance – including
information sheets on specific disabilities, information for people new to disability, education, funding, transport, and information giving disabled people advice on personal security.
Come and check us out.
MOTOR NEURONE DISEASE ASSOCIATION CELEBRATES
ITS 30TH ANNIVERSARYThe association grew out of a meeting in Auckland of a small group of people who had been affected in some way by MND.
In the early days small groups of volunteers provided assistance and support to their local communities helping people living with MND, their carers and families access information and support services.
The association also worked to raise awareness of MND. MND affects around 1 in 15,000 of the population so at any time there are around 300 people living with MND.
Over the years the association was able to raise sufficient funds to allow it to employ field workers and equip them to provide a more permanent support base. There are now seven field workers covering the country with Reima Casey based in Feilding covering MidCentral DHB, and Moira Young based in Wellington covering Wairarapa DHB.
The MND Association looks forward to their next 30 years providing ongoing assistance and support to their clients, carers and families and the health professionals who in turn support them.
Relay For Life is an inspiring community event that gives everyone a chance to celebrate – cancer survivors and carers – remember loved ones lost to cancer and to fight back – by raising awareness and funds to support the work of the Cancer Society. It is one of the Cancer Society's key fundraising and community engagement activities. It's for people of all ages and fitness levels, anyone can take part.
Once again team Kotahitanga, made up of work mates, family and friends, gathered at the Massey, Hokowhitu campus on Centennial Drive with a tent, gazebo, sleeping gear and enough food to feed a small army, ready to walk the circuit for 24 hours. We had fundraised most of the year and $4200 plus had been raised (final figure banked to be confirmed in April at the final teams meeting for the year). We were a smaller group this year, with only 10 registered members (minimum for a team), but we represented the many people who have helped our cause by supporting us in our fundraising efforts, with knitting, donating produce, proceeds from sale of recycled clothing, donating to and buying our numerous raffles, attending our movie nights, fashion parades etc. Thank you. Ma te kotahitanga e whai kaha ai tatau – in unity we have strength.
After the opening ceremony our team baton hit the track and began its journey. With 110 teams onsite, the enthusiasm is tangible. It is also a test of endurance with little sleep, relentless heat and (yeech!) portaloos. This year, endurance was taken to a whole new level with torrential rain and hurricane like winds (only a slight exaggeration) making a change from the usual worry of spoilt food due to heat. We were hit by a downpour around 2.30pm to 5pm but our baton carriers reported the great music coming from the band on the stage, carried them through the discomfort of being wet and cold. The candle bags placed around the track for the remembrance ceremony at dusk, looked forlorn having bowed to the pressure of the rain and fallen over – the track resembled the trail to the milking shed in winter. This year we definitely left footprints.
At 10.30pm we were hit by another weather bomb. By 2.30am we were literally “over it”, "we were saturated, our tent was leaking and even our dry clothes were wet, still in their overnight bags". Home for a shower, regroup and back again. The Lions cooked breakfast is always a welcome start to Sunday morning and the sun tentatively showed its face – the track started to dry up. The muddier spots had been screened off and everyone was down to walking with one team member on at a time - to spare the track. With only one person on the track, a large crowd gathered in front of the stage to enjoy the music, in the increasingly warm sunshine, such a fantastic way to spend a
sunny Sunday morning. In the closing ceremony it was declared that 2015 Relay for Life will be memorable for many reasons, but more for the tenacity of the participants who never gave up through fair weather and foul – much like the cancer journey.
By Jacinta HallKotahitanga team members Jo Martin and grand-daughter Alexia.
Jacinta Hall is ready for the big weekend.
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