Everyday Caring Update

Technology has advanced since Emily’s accident in 2012 with social media sites growing so popular that it is difficult to keep up with all the Instagram, Facebook and Twitter ‘feeds’.  While advocating for resources online I now have to be mindful in regard to the volume and validity of information. Here’s my Everyday Caring update…..

Everyday Caring Update

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Science to overcome SCI needs inspiration

I was in Barcelona recently at the Picasso museum, impressed by this revolutionary artist. He experimented with ideas and design, colour and shapes. He altered our perception of objects and our interpretation of faces and bodies. He had the original thought that comes to geniuses.He reinvented art and it’s form.

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We all benefit from technology; it’s just imperative for the physically challenged.

I use IT and social media everyday, so much so that I hardly think about this technology. The crux of the matter is not my use of technology; Facebook, Twitter or my blog. It’s Emily’s use of technology which is when science, the evolution of the computer/ipad and the rapid development of assistive commodities show a major impact.

Emily’s injury has altered her life’s course and she has had to become more cerebral than physical. She returned to University to retrain into a role that accommodates her physical abilities. She learns via online lectures, she records her notes with swipes and touches on an ipad screen, she has voice recognition when writing on the computer. She has C-bus wiring to open doors in the home. Lights and heaters are on timers so that her environment is controlled without any need for daily commands. Improvements in technology allow Emily to interact in society at a heightened level in comparison to some decades past. A new age approaches when robotic technology may even have her on her feet?

I have set up google searches so that I am alerted daily to articles published on the WWW which include key words like spinal cord injury (SCI). The publications that I access inform me of SCI news around the globe. I am aware that teams are developing epidural stimulation therapy (see here), that Exoskeletons have become available in the USA (see here ) and that Hong Kong has an advanced research team led by Dr Wise which involves stem cells (see here). This is impactual life changing technology, research and development on this level has the eyes of the world watching, we’re listening; all waiting with hope.  Research and development in technologies have initiated change, change in the approach to SCI care, change that’s pushed for better SCI rehabilitation and the hope of a future liberated from the continual use of a wheelchair.

I feel very humble with my primitive use of IT and social media. I developed my Everydaycaring blog as a forum to resonate with others. I highlight there is a fine balance between sitting in front of a screen and typing vs getting outside to socialize with an actual friend, hot beverage and scrummy muffin! The muffin sways me and I’m out of the house and up the road to the nearest cafe to meet friends. Social media is a great opportunity to connect, especially for many in isolated communities or for those that are housebound. Facebook keeps us all in touch with family and friends. I am just mindful that interacting with people who are actually present benefits my psyche and can not be replaced by Twitter, Facebook and WhatsApp. It might appear that my comments are contradictory as a blogger, as I post on Facebook @Everydaycaring and I tweet on Twitter #Everydaycaring but I hope my message is always clear; I advocate that we all need to engage in activities outside the home so that there is some real respite and tangible interaction in our day, week, month, that goes for me and Emily.

As I reflect on my and Emily’s use of technology it’s obvious we have vastly different needs. I use IT to communicate and share, I aim to strike a chord with others so there is a unity of everyday caring.  Technology is a marvelous resource and welcomed by all not just the physically challenged BUT it is the continued development of medical, social and physical assistive technology that is fundamentally imperative for the physically challenged. Technologies impact in the SCI arena is immeasurable, not only in it’s practical application but in the hope it instills.

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See Carers NSW for further resources for carers

See SCIA for news on SCI research

See Spinalcure for more news on SCI research.

See Spinalnetwork for news on work towards a SCI cure. Also on 13th October Spinalnetwork host Connections 2014 at Royal Randwick Racecourse in Sydney. Connections 2014 brings together researchers, clinicians, decision-makers and the community in a single interactive forum to discuss spinal cord injury research Down Under. As well as some of our best and brightest home grown experts, we will welcome two leading international speakers including Dr Kim Anderson from the Miami Project to Cure Paralysis.

Delighted to see Emily as a face on Spinalnetwork’s website. We are looking forward to  Connections 2014, see you there!

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SCIA Expo Spectacular….. want to know more……

It took Emily and I an hour to cross the Expo threshold because we couldn’t stop talking! It was a lovely opportunity to catch up with our friends at SCIA and refresh ourselves with their news, while becoming chummy with Charlie, a sleek black labrador service dog.

SCIA gathered service and product providers, support organisations and a range of equipment together into The Australian Technology Park, Sydney. Parking was free and we accessed the venue, Bay 8, with ease. There was ample space inside for this gathering of exhibitors, powerchairs, dogs, children, cafe and carers.

Emily had been asked to participate in the SCIA Exercise Rehabilitation Program demonstration at 11.45 and 2.30pm so we relaxed into our day at the venue. The SCIA Walk On Program “is an individually designed, intensive, activity based program that assists a person with spinal cord injury to improve and maximize their functional ability and lead a more independent life. Exercises are performed out of the wheelchair one on one with a qualified Exercise Physiotherapist or physiotherapist”  

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Emily thoroughly enjoys her sessions at Walk On, she gains from the positive energy, boosting her confidence and moral as well as benefiting from the practical therapy. It is also an opportunity to structure therapy ideas and re-energize rehabilitation goals.

We met so many friends we knew from Royal North Shore Hospital, Royal Rehab  and other SCI organisations, networks and workshops, my voice grew horse! No one could escape the natural charisma of Duncan Wallace, the Executive Director at Spinal Cure Australia. Duncan is energetic, enthusiastic and engaging, he spoke to us with insight about his vision for spinal cure in Australia, he vocalized about the power of the group and the need to educate politicians, the need to speak as one so our voice is heard. See here. Like their Facebook page to follow their news.

My next stop was to meet the staff at IDEAS, Information on Disability and Education Awareness Services. Wow is the descriptive that comes to mind, one phone call to access assistance. Their newsletter is packed with information and with information comes choice,  and choice matters! IDEAS NSW;  “is a free telephone information service for people with disability, their family, carers and other supporters” – call 1800 029 904. Ask them questions,  IDEAS give you the answers and you make the decisions.

I went on to meet Trudy Rice who helps arrange holidays for the disabled at Time Fly’s Travel. All services that expand the opportunities offered to people with disabilities must be embraced. I have St Petersburg and The Great Wall of China on my bucket list with Emily! I took away Cruising from Australia, Thailand and Malaysia travel brochures to read over coffee.

Carers NSW was also on my to visit list when I saw the Expo floor plan, I was  delighted to introduce myself and received a warm welcome. I am becoming more aware of the wealth of newsletters available but actually most organisations are Online, as well as on Facebook or Twitter. The internet and social media is an interface that works well with isolated carers in rural homesteads or if carers are housebound with their role. The internet can be accessed at your convenience and  information is updated so the latest news is at your fingertips i.e here!

Carers NSW; “is the voice of all carers in NSW. The vision is for family members and friends who provide care across the state to enjoy improved health, well-being and recognition by governments and communities.”  See more here.

Bay 8 was filled with exhibitors, service providers and support organisations.. Emily and I found ourselves talking to company directors about products that may not be appropriate for her immediately but we are aware of them and their development so in future we can access these resources. Having the opportunity to see and discuss the available services and products is empowering. It broadens our horizon, expands our choices and will enhance Emily’s independence.

As a carer I am  interested in products and SCI services because anything that promotes Emily’s independence – reduces my role, I enthusiastically embrace positive change, SCI service development and advocacy (individual and within organisations) because as a carer I want to be made redundant. My greatest hope is that SCI is cured, that improvements in SCI care offer people hope, that improvements in technology offer freedom from a life time of wheelchair use. I welcome SCIA Walk On Program as it improves functionality, develops strength, physical stamina and skills that increase Emily’s involvement in her everyday life, her studies, volunteer work, her sport.

Within the extremes of SCI  there are many differences but we are one community. We have to come together to empower ourselves with one voice and we have to work together to facilitate positive, practical change in an aware and inclusive society. The SCIA Expo, in my opinion, was a rare opportunity to connect to numerous SCI service and product providers, SCI and Carer support organisations, to gain information that makes life easier, makes independence a reality.

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Apps and solutions……..pre-order coffee and pay without using cash.

At the beginning of Summer School (see here) I wrote about the challenges of using cash, coins and bus tickets, undertakings that are demanding for the compromised digits of people living with quadriplegia.

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