Today is the World Spina Bifida & Hydrocephalus Day

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Today, Wednesday, 25th October, is the World Spina Bifida and Hydrocephalus Day (WSBHD) as designated in 2011 by the General Assembly of the International Federation for Spina Bifida and Hydrocephalus.

IF and its member organisations – including SBHI -  are using this day to raise awareness and understanding about spina bifida and hydrocephalus.

It is also a way to advocate and promote the rights of persons with these impairments.

The focus of this year’s WSBHD is on mental health log onto https://www.worldspinabifidahydrocephalusday.com/ to see the ‘Reclaiming my Health’ video

Why is there a need for a World Spina Bifida and Hydrocephalus day?

Thanks to the continuous advances in medicine, healthcare services have been drastically improved for people with spina bifida and hydrocephalus.

But despite this, many children and adults living with spina bifida and hydrocephalus still don’t have access to the right treatment and care services, and stigma and discrimination remain a reality in many countries.

The WSBHD is very significant as it reminds the public and policy makers that spina bifida and hydrocephalus are a reality and that it is imperative to increase awareness about them and improve the lives of people living with these conditions.

Here are some global spina bifida and hydrocephalus facts:

• There are at least around 1.5 million people globally living with neural tube defects.

• People with spina bifida and hydrocephalus need timely and affordable access to appropriate, specialised and multidisciplinary care throughout their lifespan.

• Spina bifida is one of the most common birth defects, with an average worldwide incidence of 1–2 cases per 1000 births, but certain populations have a significantly greater incidence.

• Spina bifida is a birth defect, which affects the development of a baby’s spine during the first 28 days of a pregnancy.

• You can be born with Hydrocephalus, but also acquire it later in life. For instance, due to an infection, tumour or traumatic brain injury, or older adults can develop Normal Pressure Hydrocephalus.

• Hydrocephalus may be congenital or acquired. Hydrocephalus may result from inherited genetic abnormalities or developmental disorders such as those associated with NTDs including spina bifida.

• Children with spina bifida and hydrocephalus need special understanding and strategies to develop and to protect them from isolation and bullying.

• Each year, hundreds of thousands of children continue to be born with hydrocephalus, for instance, 100,000 to 375,000 new cases in sub- Saharan Africa.

Join in on the World Spina Bifida Hydrocephalus Day conversation on Twitter: https://twitter.com/ifsbh; Facebook: https://www.facebook.com/ifsbh ; YouTube: https://www.youtube.com/user/IFglobalorg/, and IF website: http://www.ifglobal.org

Hastags to use include: #wsphd #hydrocephalus #spinabifida


Exercise has improved my fitness, emotional, and mental well-being

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When Micheline Clancy came to the realisation two years ago that she was actually the one placing obstacles in the way of her own happiness, she decided to make changes to her life.

“I was unhappy, I was putting on more and more weight and had to use an electric chair as I could not push myself any distance in a manual chair,” recalls 35-year-old Micheline.

“I felt I needed a change in my life. I met the right fitness instructor and it went from there.

“I was going through a bad time for a long time, saw post on Facebook about boxercise and thought I would like that and would try to get fit.

“I started off in Fitness Factory in Ratoath, Co. Meath with a personal trainer, June Crawley who adapted exercises for me.

“June became my hero and inspiration throughout this time. She pushed me to join a gym, Tone Zone Gym in the National Aquatic Centre, to avail of more equipment and be more independent by doing my own workouts.”

Micheline, who is now back in a manual wheelchair, completed the Darkness into Light run for Pieta House last year and completed the VHI Women’s Mini Marathon this year.

“I am much happier now, there has been a great sense of achievement. I am still a work in progress but I now love the gym and exercise – I get up in the morning and the first thing I do is go to the gym!

“Before exercise was not a big thing for me, it was a big effort and I had no interest in it. Now, I am addicted to it and it is part of my life,” she says.

“I can now see the importance of it and I can see changes it has made. Not only has it changed my fitness, but it has been great for my emotional and mental well-being.

 “Now, I want to promote it and help other people and let them know how easy it is and how important it is. I am exercising and eating healthily and it is benefitting my overall health and I would recommend it to anyone.”

By taking steps to lose weight and get fit, Micheline says that she is taking control of every aspect of her life and found that setting goals has helped her along the way.

“My next goal is a skydive! Darkness into Light and the Women’s Mini Marathon were also challenges. However, the biggest one was to go on SBHI’s SHINE respite programme away week to England this summer.

“I could not go last year because I was still in my electric chair. I really wanted to go so it was an incentive to me to keep up my exercising and healthy eating and aim to get myself back into a manual chair.

“It was such a sense of achievement to be able to go and it was an amazing experience and I was able to do all the adventure activities, even zip wiring!

“I now know that a person themselves places obstacles in their way. When I had all the weight I found it hard to transfer myself from chair, now I can do it myself and do not need any assistance.”

Micheline has always been an independent person; she has lived in her own apartment for the last nine years and now that she has done so much in the last two years to improve her health and mobility, she wants to help others to do the same.

“I recently qualified as an executive life coach and I am in the process of setting up my own business. I want to help motivate other people by working with them on personal goals and what they want to achieve,” she says.

“I have found that yoga, meditation, and mindfulness they have helped me big time. I have also done a number of positivity workshops.

“I am now doing a lot of speaking in that area. My passion is to help others and it is great that I am now following my passion.”


There are no obstacles only challenges

 

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‘There are no obstacles, only challenges’. This is the mantra that SBHI Youth & Respite Co-ordinator Helen Riney lives by.

Helen has been presented with challenges over the past two years, however, she has faced them together with her fiancé John Williams. And, thanks to their combined determination, this couple is now preparing to move into their first home together.

Like hundreds of couples around the country planning to get married, they took on the stressful task of trying to buy a house together in an Irish property market where demand is currently far outstripping supply.

Unlike most other couples, Helen and John faced the additional challenge, as wheelchair users, of having to find an accessible home or one which could be easily adapted to their needs.

“We were very positive about it from the very beginning, we did not want to let anything stand in our way,” says Helen.

“When we got engaged and were planning to get married, we knew that we had to be living independently together.”

“We just wanted the same as everyone else,” added John.

“We were very determined and positive the whole way through, not going to give up,” says Helen.

John is a first-time buyer and, apart from a very short-lived experience, has never lived independently away from his family home.

“I moved out to IWA independent living apartments in Clontarf in 2008. It was a disaster and I only lasted one week,” he says candidly.

“My mum got ill in late 2004 and I knew I needed to get my act together. My mum was not going to be around forever, my brothers and sisters had lives of their own, so I knew I needed to become independent.

“However, for me, living independently was a disaster on so many levels: I had not prepared myself and I did not even have a proper bowel routine in place.

“So, I went home. Then, thanks to this amazing woman (Helen) I decided to give it (independent living) a go again.”

For John, asking Helen to marry him in December 2015 was the first step towards gaining his independence and it was, he says, a mixture of fear and excitement.

Helen has been living independently since her college days and bought her own apartment a number of years ago.

“I always wanted normal things and my parents always wanted me to be the same as everyone else,” says Helen.

“I lived on my college campus in north Dublin for three years. I was going home at weekends to my parents’ home in south Dublin, but gradually I extended my time on the college campus, as I did not want to go home as much!

“For my third year Erasmus, I went to Germany for a year – that was a real kick in the backside - doing everything for yourself from self-care, personal care to washing and cooking.

“I was not relying on anyone else, I did not have that option, but it shows what can be done with having the motivation to change.”

When John and Helen commenced their property search, Helen admits to being initially negative as she was not approved for mortgage protection on her apartment and she feared this would be the same with a house.

However, as her apartment had some accessibility issues, including a lift which kept breaking down, it was not practical for her and John to stay there, so the house hunting had to start.

“The mortgage broker we engaged was brilliant. He was very positive but also very honest about our expectations and the reality of our medical difficulties. He did a lot of work on mortgage protection for us,” she says.

“I got a waiver on mortgage protection and Helen was approved for it. The main obstacle is about how disability is seen. We both have spina bifida and it is seen as a life limiting condition,” adds John.

John and Helen looked at “tons” of houses and eventually settled on a dormer bungalow in Naas. Their offer led to some negotiation, which Helen says was stressful as they had to retain a budget to make the house accessible.

“Eventually, we met in the middle over the price. The elderly couple selling, wanted us to have their house because they felt it would be a nice neighbourhood for us to live in,” says Helen.

“However, once our offer was agreed, the estate agents started exerting a lot of pressure on us to get our paperwork and money sorted, so we got a solicitor to deal with them on our behalf - we would have been lost without that solicitor.

“We used mainstream companies and specialist companies to get the accessibility work done which included a new accessible kitchen, two adapted bathrooms, and a new wet room.”

Contact was made with the local authority on John and Helen’s behalf in relation to the possibility of them getting a housing adaptation grant. They were informed, through that contact, that they would definitely not get a grant due to their combined income being over the threshold and that there was no point in them applying.

“We thought that was unfair to be assessed jointly as individually we would have qualified and not having the grant put us under more financial pressure,” says Helen.

“Then we could not get a stair lift to suit both our needs, we tried everyone going, so we had to go for a through floor lift at twice the price.

“As we had no adaptation grant, we did have to get some financial assistance from our families to buy a second hand through floor lift.”

Now, that Helen and John are hoping to move into their new home at the end of October, they feel that overall the house purchasing process has been a positive one for them.

“We knew where we wanted to be living, we knew we are getting married, so we have to live together,” says Helen

“We will have to learn how to share tasks; as we both have disabilities, we will have to look after all our own stuff individually too.

“I think that there are a lot more obstacles for people with disabilities, nothing is straightforward, but it has been worth it as we want to be independent. We still have the same goals as we had at the start of this process.

“We never got to the stage where we said it is not worth it or we wanted to halt it.”

John admits that he has done a lot of growing up since deciding to get married and live independently.

“It is all about breaking ties, moving out of my childhood home and living with Helen. While we will have backup and help, it will not be available to us 24/7, so we will have to get on with doing things for ourselves.”

Both John and Helen agree that a key aspect to both of them living independently, maintaining careers and being able to move out of Dublin to Naas was being able to drive and having their own cars.

“Still, it will be a big transition to independent living together in terms of doing everything together: we will work hard together at being patient with each other!

“For me it has been a change of mindset from being cared for to doing things for myself – I got a nudge from Helen! I started counselling and it is making me grow up. I am dealing with a lot of stuff in my personal life and in transitioning to living together with Helen.

“I have been self-catheterising since I was seven or eight but my bowel care was a complete mess. I did not have a life, I was constantly worried and stressed if I went out and about.”

“Yes, for John that change in mindset was that little last thing to self-reliance. We all have to work at independence and learn how to not depend on others,” says Helen.

“For me, it was all about breaking the dependency chain and I am so glad that I have.”


Alicia is a very independent and capable child

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Members of the public sometimes express surprise when they see six-year-old Alicia Riordan wheeling herself along beside her parents Joe and Jacqueline and that they are not pushing her wheelchair.

However, what people do not understand is that Alicia, who lives with spina bifida, is a very independent and capable child and is able to – and wants to – take charge of her own mobility. 

“We do not push Alicia’s chair when we are out, she just follows behind at her own pace,” says Joe.

“We often hear people saying things like ‘look at that poor child’. However, Alicia wants to push herself, she is able to do it.

“Family and friends even say we could do more for Alicia but we just do not do things for her that she is able to do for herself.

“There is no point in molly coddling her as she would then not be able to do anything for herself.”

Joe and Jacqueline, who live in Cashel, Co. Tipperary, knew when Alicia was born that she would never walk, because of where she had the lesion on her spine. This is something that they have had to learn to deal with, however, Alicia has always accepted it.

“From the start Alicia knew that this was the way she was. Even now when she is on the floor and her legs curl up into ball, she will mutter ‘stupid legs’,” says Joe.

“She knows that her legs do not work, but she has never known anything different. She is tough and independent and we have always encouraged her to do things for herself.”

Alicia attends a mainstream primary school and while she is a little bit behind her peers, Joe and Jacqueline have no doubt that she will successfully complete her primary and secondary school education, and even go onto third level if she wishes.

Parents always worry about their child’s future but Joe and Jacqueline, who have two other children Nathan (14) and Rebecca (11), accept that their concerns are compounded by Alicia’s disability.

“Hopefully Alicia will grow up to be in a position to live her life as an independent adult but I do worry about what will happen if she is unable to do that,” admits Jacqueline.

“In years to come when Joe and I are old, how much assistance will Alicia need? And if she needs assistance, who will give it to her?

“However, we do our best to remain positive and believe that she will be able to do her best at school and will be able to be independent – she is as bright as a button.”

Joe and Jacqueline understand that Alicia will have difficulties to face as she grows up, not just in living with her disability but in dealing with ignorance and discrimination.

“When we are out, we are constantly seeing people stepping away from Alicia’s wheelchair, trying to avoid it at all costs,” says Joe.

“All we can do is keep trying to raise awareness and keep repeating the message in the hope that people will see Alicia as a person first and not her chair.

“We have found that talking to people about Alicia has been a great help, particularly through SBHI talking to other families and to our Family Support worker has been a great support.

“It is good to know that you are not alone and that there are other families going through what you are and who are willing to help and lend support.

“And I do not think that we would have gotten on as well as we did without our SBHI Family Support worker who has been great – I think without her we would have broken down.

“Alicia is now doing fantastically well and we would not change her for the world.”


Support the Call for Investment in Neurorehabilitation in the Upcoming Budget

The "We Need Our Heads Examined" campaign for action on neurorehabilitation is contacting elected representatives in the lead up to the Budget, calling for investment in neurorehabilitation services as a priority.

The campaign, which is supported by 17 organisations representing people with neurological conditions, is calling for €7m investment in 2018 to begin to address the huge unmet need for neurorehabilitation services.

    

Read more

Update – SBHI Parents’ Advocacy Committee

6th September 2017

Earlier in the year I was asked to meet with a group of parents who have children with Spina Bifida and/or Hydrocephalus. We met and discussed a few key issues including: care for children in relevant children’s hospitals; issues around scoliosis care; and, what could be done to achieve real change in these areas.

The meeting was intense and the detail which emerged was very complex. It was clear that any progress on these issues would require a sustained and targeted response, delivered with patience and a strategic focus.

In order to make real progress on this, it was suggested that a core group come together to narrow the focus of advocacy work so that a plan with achievable aims could be established and pursued.

On 5th September 2017 I met with this group and it was agreed that the Parents’ Advocacy Committee would work with the CEO, relevant staff/Board members, affected parents/carers, and all other relevant stakeholders, initially around three main areas:

  • Clarification regarding the current and future plans for the paediatric Spina Bifida clinics in Ireland
  • A vast improvement for the care of children who have both Spina Bifida and scoliosis
  • A commitment for better education to be provided for obstetricians regarding a prognosis of Spina Bifida and/or Hydrocephalus in a developing child

A plan will now be established by the committee so that the appropriate actions can be taken and reflected upon. The responses we receive will be shared by the committee so that all those affected are kept up to date.

This is very much a collaborative process, driven by a group which is intent on realising real change. If you would like to get involved with or contribute towards the work of the Parents’ Advocacy Committee, please contact Amanda Coughlin at:

Email: amandacoughlan@live.ie

Phone: 085 143 4953

Facebook: https://www.facebook.com/amanda.coughlan.12


1 down, 99 to go!

A Kerry based gym instructor’s ambitious target of raising €100,000 for people in Ireland who live with Spina Bifida and/or Hydrocephalus has now reached the €1,000 mark.

Following on from his ’12 Marathons, 12 Days’ in 2014, when Shane Finn raised €36,000 for Spina Bifida Hydrocephalus Ireland (SBHI), the unstoppable Kerry man is now back with double the distance – a total of 628.8 miles – to conquer!

Shane Finn is set to run 24 marathons in 24 days this summer and SBHI is supporting him all the way.

 

 

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SHINE volunteer raises €1300 for 'Sunflower Week'

Dundalk woman Jane McDermott organised a table quiz in her local pub, Kennedy’s Bar last Friday night (17th April) to raise funds for Spina Bifida Hydrocephalus Ireland’s (SBHI) summer respite programme which she has volunteered on for the past five years.

Having set herself a fundraising target of €1,000, Jane, from the Carrick Road in Dundalk, was overwhelmed with the support she received from her local community in exceeding her goal by raising a total of €1,300.

 

 

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Our Beautiful Minds: National Brain Awareness Week Launch Event

A public information evening - 'Our Beautiful Minds: Our brains and how they shape our lives' - is the launch event for National Brain Awareness Week, March 6th to 12th 2017.

Our lives are shaped by our brains and how they are impacted by challenging events, illnesses and injury and everyday experiences.

This launch event for National Brain Week will be an evening of personal testimony, emerging research and clinical perspectives on the brain and neurological conditions.

 

 

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Derval O'Rourke jumps in to support 24 Marathons, 24 Days

Following on from his ’12 Marathons, 12 Days’ in 2014, when Shane Finn raised €36,000 for Spina Bifida Hydrocephalus Ireland (SBHI), the unstoppable Kerry man is now back with double the distance – a total of 628.8 miles – to conquer!

Shane is set to run 24 marathons in 24 days to raise €100,000 for SBHI: 24-year-old Shane will set off from Donegal on 22nd June and make his way through 24 counties as he covers a marathon a day for 24 days, ending in his home town of Dingle on Sunday, 15th July.

In training for this extraordinary challenge over the last number of months, Shane’s 24 marathon campaign has attracted support from one of Ireland’s most successful track and field athletes, Derval O’Rourke.

The three time Olympian and World 60m Hurdles Champion officially launched ‘24 Marathons, 24 Days’ in the UCC Sports Mardyke Sports arena in her native Cork at noon on Friday, 20th January.

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