Carlo Alimboyong, is a 2013 Griffith graduate and now Operations Manager and Exercise Physiologist working in disability sport. As a member of Inclusive Futures: Reimagining Disability, Carlo advocates for physical activity and exercise to people of all abilities. He is passionate about creating a community, particularly for those that are disadvantaged and aren’t aware of the benefits of exercise. The results and impact that he and his team has created is continually growing and he is eager to revolutionise the way we look at health.

Carlo works predominantly with a vast array of disabilities, including; Neurological Disorders such Multiple Sclerosis & Cerebral Palsy, Physical Disabilities such Amputees, Meningococcal, Developmental Disorders and much more. The particular interest that Carlo facilitates when working with people living with a disability is simply working together to achieve their goals. Some of these goals have included becoming better at home-gardening, to wheelchair basketball, to goals of participating in the Paralympics.

We asked Carlo about sport and spinal health for people with disability and what the benefits are. Read what he had to say below.

My name is Carlo Alimboyong, and I am an Exercise Physiologist and Operations Manager at Atkins Health. I am passionate about community participation at all levels in our society. Disability sport is something I have been involved with over the last 5 years. Generally speaking, the involvement and awareness of disability sport is quite low. However the positive outcomes that I see from people with disability (PwD) participating in community sport is of high regard! These benefits are seen in both social and physical outcomes. I am an optimist that endeavours to navigate barriers so that I can influence as many PwD to achieve their goals and a better quality of life through sport. For spinal health specifically, positive benefits can result from training for sport.

Social and Physical benefits

The social benefits from community sport range from enhancing mood, reduced incidences of depression and social embeddedness. Experiencing this firsthand, I can say that the uplifting comradery and support that each individual offers is second to none. Being a part of disability sport is truly inspiring.

One would assume that a PwD participating in sport has exceptional physical abilities… this is not necessarily the case! We strive to encourage people of all abilities to participate, but also allow them to understand that training is an important habit to develop to compliment participation. Training is where the real benefits are achieved from. In regards to spinal health, specific resistance training has been shown to improve bone mineral density which is important for preventing any fractures. Resistance training will also improve muscle size & strength, which has shown to positively impact posture, reduce pain and enhance mobility.

Why is participation low?

Individuals face many barriers in being physically active. This can include lack of transport, impairment type, lack of trained volunteers and appropriate programmes and lack of information received from therapists following discharge. Yet it is evident that PwD are eager to participate and improve their health and physical function. However, participation at great levels will only occur if practitioners reduce the barriers to access, provide relevant training to staff and volunteers, educate their patients about the importance of physical activity post discharge, and create tailored programmes in safe and accessible community facilities.

What can we do as a society?

At a community level, there are many supports you could access. This includes your council, local sports teams (it isn’t uncommon for a local club to have a disability team), local area coordinators/support coordinators and allied health professionals.

At a macro level, be sure to keep up with organisations such as Sporting Wheelies and Wheelchair Sports Australia (WSR) on news and events. In the upcoming years leading up to 2032 Brisbane Olympic and Paralympic games, there will be great emphasis on participation in sport and recreation.

What can Atkins Health do?

Atkins Health is a proud supporter of training PwD for their spinal health as well as disability sport. Some sports that we have been involved for training include:

• Wheelchair basketball
• Disabled surfing
• Disability sailing
• Para-powerlifting
• Fun-Runs
• General Fitness

Atkins Health prides themselves achieving results for their clients. If community sport participation is a goal of theirs then we will help support you in achieving that goal, from building capacity to navigating the correct activity in community for you.

Find out more about Carlo and his work:

https://www.atkinshealth.com.au/about-us/practitioners/carlo-alimboyong/

More Information:

https://www.atkinshealth.com.au/contact-us/appointments/

Get Social:

https://www.facebook.com/atkinshealth

https://www.instagram.com/atkins_health/

My name is Lisa and I’m a member of the Griffith University Inclusive Futures Reimagining Disability Engagement Council. It’s a position I love, because I get to work alongside other passionate people who also want to use their lived-experience with disability to create positive systemic change.

I acquired multiple visible and invisible disabilities in my early twenties including a brain injury and amputations. In my experience and without a doubt, it’s all of the things you can’t see, such as chronic pain and fatigue (plus other things related to living in this disabled body) that are far more challenging than my wheelchair, prosthetic or anything you can see.

When I left hospital, I couldn’t wait to start working again. Being productive, using my brain, creating something were all what I loved to do in my previous roles in advertising and media.

I went back to agency life for a while but knew it wasn’t conducive to my ‘new normal’ with disabilities so went out on my own. I had always spent and stil spend a lot of time hunched over a keyboard, which might not be great for my spine but my brain appreciates it. Moving periodically has been the key for me.

I started my business back in early 2010. With a background in business communications, I saw significant gaps in the market where industries could be better working with and serving the disability community. But despite my best efforts, few mainstream businesses wanted to listen.

When I’d enter a corporate environment, people would see my disability (usually my wheelchair) before they had a chance to hear what I had to say or how I could help their business achieve its commercial objectives.

This continued for many years and still happens today, but fortunately, to a lesser degree. Business leaders now understand the need for diversity and inclusion of disability in their content and practices. They are realising that it’s not just a ‘nice thing to do’ and socially responsible but the financial and economic benefits can also be great.

As a result, the same businesses and industries that once told me to go away and to stop dreaming are now the same ones asking me to come and consult to them on disability inclusion.

My husband jokes that I have a “spine of steel” for persevering with work over the years despite the initial rejections and blatant discrimination. But in all honesty, my spine and the muscles and nerves around it probably aren’t in the best condition – despite my vigilante efforts to keep my spinal health in check.

Even though my spine was not injured when I first fell ill and became disabled, I still have a lot of problems with it and am in constant pain.

My body is riddled with arthritis and I had my first hip replacement at age 27. I have peripheral neuropathy (severe nerve pain 24/7) in my remaining right foot and we can’t be sure that my legs are ‘talking to’ my brain properly (because of the brain damage). I often wake in a very uncomfortable position with my spine twisted and spend the day taking pain-killers.

To deal with the constant pain, I’ve found that keeping myself occupied (sometimes with work) or staying active has worked for me. I live near a gym so see my exercise physiologist there each week. Seeing my physiotherapist fortnightly for deep tissue massage, trigger point therapy or dry needling is also beneficial.

Pressure injury prevention has also been an important part of my life with disabilities. I acquired 3 pressure injuries in hospital, including one stage-4 that still causes problems now, nearly two decades after it has healed.

Unfortunately, I have acquired a few since leaving hospital but am far more aware of what to look out for and what to do. Part of this has been because of my ongoing work with public and private healthcare facilities, working with staff and helping to write educational material for patients about pressure injury prevention.

In my own life, I’m also conscious of what I can do with regard to lifestyle interventions to lessen the impact that disability has on me and my loved ones. I’ve consulted dieticians and a great Functional doctor who is also invested in my health holistically – including my spine.

Even though I can pinpoint very specific parts of my body that have been affected by disability (such as my amputated leg), disability affects the whole body and the whole person. Spine and all.

Visit Lisa’s website:
https://lisacox.co

Follow Lisa on social media:

Facebook: https://www.facebook.com/lisacoxwriter/

Instagram: https://www.instagram.com/lisacox.co/

LinkedIn: https://www.linkedin.com/in/lisa-cox-217588a/

Carol Taylor is an award-winning Lawyer and the world’s first Quadriplegic fashion designer and disability advocate. She is a Partner (Head Design and Production) of Christina Stephens, Australia’s most recognised adaptive clothing label, conceived by business woman and founder Jessie Sadler.

In 2001 an accident left Carol a quadriplegic. Carol’s spinal cord was severed resulting in complete paralysis from the chest down. Despite having only some arm movement Carol spent years teaching herself to use her paralysed hands. With the help of some specially made tools, Carol found a way to draw, paint, and create. Carol is now an award-winning artist and fashion designer, having shown her inclusive and adaptive designs at Australian Fashion Week.

Being a very businesswoman, spinal health is important to Carol, who occasionally suffers tension headaches and migraines, most often caused by stress. “I have a weighted eye mask; it can be warmed or chilled and I use this from time to time. Overwhelmingly for me though, the best remedy is physiotherapy, followed by resting in a dark room. I used to suffer chronically from migraines before my spinal cord injury, interestingly I have far less since I severed my spinal cord. I wonder sometimes that maybe the message can't get through to the brain so when I do from time to time have one it's probably pretty bad.”

When it comes to keeping my spine in check, I swear by physio twice a week. It's an essential part of my well-being, and I rely on it for proper functioning. I know that exercise is also critical for spinal health. Although I've been longing to attend Making Strides [an exercise physiology and allied health service] for a while now, various medical issues, coupled with the ongoing Covid situation, have hindered my participation. Thankfully, I've got things under control now, so I'm hoping to start there soon.

Now when it comes to adaptive clothing, I may be totally biased, but I strongly believe that it plays a crucial role in promoting spinal health. There are the obvious mental health benefits of feeling empowered and happy within yourself when you know you look hot and have the choice to wear what you want, not just what you're given. Then there are the physical benefits of clothing designed to meet your needs especially when it comes to things like pressure sores. That's why we developed our special seamless “bucket bum" pants, which allow customers to freely wear what they want without the fear of nerve pain or pressure sores. Pressure sores are incredibly dangerous, and their consequences are often underestimated. Our seated jeans have undergone extensive textile research and development to create custom denim blended with soft and sustainable fabrics like Lyocell. This design helps prevent pressure injuries by providing a soft internal surface.

A similar approach has been taken for individuals who use prosthetics. We carefully listened to their needs and concerns and recognised that durability and sustainability are significant issues due to the friction between prosthetic and fabric. Moreover, temperature regulation becomes problematic for those with limb loss, and they also require access to adjust their prosthetic as needed. Taking our customers' feedback into account, we have developed a unique and innovative approach to our prosthetic denim designs, aiming to address these challenges.

Designing adaptive clothing involves considering various aspects. Sensory-friendly fabrics are not only crucial for individuals with sensory issues but also for those who experience sudden and extreme fluctuations in blood pressure caused by their body's inability to temperature regulate. People with dexterity and mobility issues appreciate features like pull tabs and easy access. The design process goes beyond simply replacing buttons with magnets, since magnets may not suit everyone. Our designs are deeply influenced by the lived experiences of individuals with disabilities, including my own, as well as the perspectives of our customers. We genuinely listen to their feedback because, ultimately, they are the ones we design for.

We take pride in incorporating the lived experience of disability into our designs, and here's an interesting trivia fact that the general public may not be aware of: Officer Fitzroy Somerset, who later became Lord Raglan, was among the wounded in the Battle of Waterloo and lost his right arm. But this guy wasn't about to let this setback cramp his style. With his trusty tailor by his side, they developed a new shirt design. Instead of the traditional sleeve set into the armhole, they created a sleeve that extended diagonally from under the arm to the collar. This Raglan design allowed for greater freedom of movement, enabling Lord Raglan to dress easily and wield his sword effectively.

While we don’t see many folks swinging their swords these days, the enhanced mobility provided by this design remains relevant, especially when considering the physical exertion required for individuals who use manual wheelchairs constantly. For this reason, we have fully embraced the raglan sleeve design in our Unwrapped Collection.

More information:

E: Carol@christinastephens.com.au

W: https://www.christinastephens.com.au

Follow Christina Stephens on social media:

Instagram: https://www.instagram.com/shopchristinastephens/

LinkedIn: https://www.linkedin.com/company/christina-stephens/

Facebook: https://www.facebook.com/shopchristinastephens/

Hi, my name is Lindsay, I was born and grew up in Brisbane, Australia and obtained my spinal cord injury several years ago, which sees me getting around on four wheels instead of two legs. My injury hasn’t stopped me from making the most out of what I like to call "my beautiful life".

My journey began on the last day of grade 12, at the age of 17 when I went for a celebratory swim at Southbank, in Brisbane and broke my neck at vertebrae C5. Over the last 29 years, I have done public speaking at universities, conferences, fundraisers and within healthcare settings. I also work part time, enjoy travelling, attend the gym and volunteer as a peer support mentor for the newly injured and their families. I am also a passionate advocate for disability awareness and my goal is to help people and their families who are in similar situations. Recently, I started up a social media platform, including a website, podcast, and YouTube channel. Allowing me to peer support in a different manner. Honestly, it has opened more opportunities and more goals to work towards!

During my rehabilitation I took part in weekly gym sports activities – including 10-pin bowling and rugby! Not only did I do physiotherapy to get my body moving, but I also wanted to become more independent.

I remember back when I wanted to go snow skiing six months after my discharge, my physiotherapist was fully supportive and advised on what sort of equipment I would need to have to continue with my love of travel/adventures. To open up my sporting options, along with several other patients, I was invited to play weekly quad rugby games (with a stop at the Maccas drive through for a cheeseburger and sundae before heading back to the Spinal Unit!).

Is sporting activity achievable?

Hell yeah it is! Video games, gym, home workouts, sporting shooters, quad rugby, basketball, adapted sailing, surfing, drone, fishing... the list is endless! It's also a great way to meet new people, challenge yourself and learn new life skills. Not only does daily exercise help my physical body, but my attitude also gets a good workout – I find this refreshing!

Over the years, I have noticed at the gym, the clients have a more positive attitude, and it encourages everybody to push themselves even further, gaining more confidence and forming new relationships along the way.

My physiotherapist has now provided a stretching program for my support workers, which I use daily. I find that combining these with more intensive work outs, either at the gym, Making Strides (or a similar organisation with a qualified exercise physiologist) provides my body with opportunities to stretch and use the muscles I wouldn’t normally, which works a treat!

Travelling to Making Strides is a major activity just in itself! I have to travel on several types of public transport in just one day, then a two-hour intensive program, followed by the return journey. When you know no different and you have a goal, you do what is required. My motto is “improvise, adapt and overcome”.

During my time attending these sessions, I found the benefits of strength and stability. I go by the theory of use it or lose it! Some of the immediate benefits included better night sleep and a willingness to increase my activities and independence. Throughout the year, I chat to my exercise physiologist, on my travels, daily tasks etc… And together we work towards these goals. They range from swimming 25 years after my accident, travelling on an aeroplane, helicopter through to watering the garden and dragging in the washing. My poor carers are forever collecting pegs off the ground!

Participating in gym activity is not just about getting fit and healthy, it works for everyday use and is allowing me to cook BBQs with my support workers and sharing this on social media. My EP (exercise physiologist) and physiotherapist stretches/exercises also assist with my spasms and general body tensing during the winter months where I am affected by the changes in temperature.

As a result of my high-level spinal-cord injury, my temperature regulation is severely affected. I need extra layers, which is an added weight to my body. Therefore, these also help to increase my strength and stability, which is paramount for my independence. Unfortunately, I recently broke my leg in a tubing accident and spent two months healing in hospital. My immediate goal was to have the cast removed in six weeks, and that was achieved! Following that, I needed to regain strength, stability, and a range of motion; that was my second major goal. But I have started from ground zero, after spending several weeks with limited mobility. We are achieving the goal differently, but, ending up with the same result. When the warm weather returns, hydrotherapy will be in full swing, and I will be completing as many laps as possible.

I can’t believe how much the body changes and can re-adapt just as quickly!

Listen to Lindsay's podcast series on Spotify: https://open.spotify.com/show/2SJ4HYn6lqVJ6tGrxLY7p1

Spinal Health Week (22 – 28 May 2023) is Australia’s longest-running national health awareness campaign dedicated to improving the spinal health of Australians of all ages and abilities.

National SHW2023 is tackling spine related headaches head-on by increasing awareness of the painful condition and improving spinal health through effective, low risk, drug-free solutions that limit the impact headaches have on the quality of life of over 46% of Australians.

Maintaining good spinal health and integrity is of vital importance for many THC/IRFD members and subscribers. So, we decided to ask some of our wheelchair-using members to share what they do to maintain good spinal health and improve overall wellbeing this #SHW2023.

See what they said below!

JUSTIN HUA: CITIZEN SCIENTIST, THE HOPKINS CENTRE & HABITEC

My name is Justin, and I am a Citizen Science Ambassador of The Hopkins Centre and Inclusive Futures: Reimagining Disability, at Griffith University.

I was involved in a car accident in 2014, which left me with a C3 complete spinal cord injury. I am paralysed from below my shoulders and spend quite a lot of time using my computer with a Quadstick in my bed, as well as an hour every day with our two dogs Rex and Tofu. When I go out into the community, I have a carer, friend or parent with me, and use my manual wheelchair.

Whilst I have a spinal injury, maintaining spinal health is still very important for overall wellbeing. To manage the common stiffness, tension and pain in my neck and shoulders, I receive fortnightly physiotherapy­ sessions – during which my physiotherapist helps me with deep tissue massage, spinal joint and rib cage mobilisation, as well as deep breathing exercises.

The deep tissue massage, in my opinion, is very effective at managing the stiffness, tension and pain in my shoulders and neck. The stiffness and pain occur frequently, but comes on gradually, and I usually don’t realise until it gets quite bad, resulting in headaches and low mood. My neck and shoulders become sore and stiff, as I rely heavily on these muscles for using the quad stick adaptive computer controller, breathing, as well as maintaining balance when travelling. Cold weather can also add to this issue – as I am involuntarily tensing up or shivering.

Spinal joint mobilisation also helps with neck stiffness and any pain from a pinched nerve. Additionally, sideways neck stretches and using a massage gun can be quite effective.

Rib cage mobilisation and deep breathing exercises help with maintaining and improving lung capacity and function, which can stiffen over time, making breathing difficult, reducing stamina when in the wheelchair and reducing sleep quality.

Other passive exercises and stretches are performed by my carers, who help to maintain mobility and flexibility in joints, including my shoulders, hips, ankles and fingers. These passive exercises help to make transferring and dressing easier, as well as preventing skin damage or pressure injuries, due to bad positioning caused by stiff tendons and joints. I have also found over time, that my fingers and thumbs tend to curl up, causing them to dig into whatever they are resting on, which also places extra pressure on the fingertips.

Additionally, pressure injury prevention is very important, as they can occur very easily, and take weeks or months to heal, leaving painful scar tissue, which can sometimes lead to infection, if not cared for correctly. Advice received from staff at the Princess Alexandra Spinal Unit is very useful; including not to wear excessively tight or loose clothing, to be careful of seams, and to use pressure relieving gel pads on arm and footrests etc.

Some other issues I manage are pressure sores and acne. These can be a problem, as I spend a lot of time sitting up in bed to use the computer, and the QuadStick rubs on my chin. I have found using an electric bed from Liberty Healthcare, combined with a Talley Quattro alternating air mattress, as well as Heelift convoluted suspension boots to be very effective for preventing pressure sores. I have tried using sheepskin boots in the past, but it was not enough, and a pressure sore formed on my heel in the span of about six hours between lunch and dinner.

When going for car rides for more than two hours sitting in the passenger seat, I use a gel travel cushion, as I am a very slight build. For longer trips, such as on an aircraft or longer car journeys, a Roho cushion works a lot better. Be sure to deflate the Roho air cushions a bit before using them on a plane, as the cabin pressure can cause overinflation and leakage.

To manage acne, I have found using an exfoliating scrub on the skin around the neck and shoulder area, as well as wearing cotton shirts that allow the fabric to breathe, and get washed daily, has helped quite a lot. For the more problematic blemishes, creams with benzoyl peroxide like Benzac or Epiduo (which is also a retinoid cream) are good, but be mindful, as they can bleach clothes and bedding. Flipping the bed sheet one day, and washing it the day after, as further reduced skin concerns.

Lastly, I have found lack of water and sleep, as well as positioning and posture when using the power wheelchair and the Quadstick computer controller can contribute to headaches.

If I have not had enough water to drink on a day out, or I am lacking sleep due to various spinal cord injury related issues, it seems as though headaches and muscle pain are much more noticeable.

Also, if my body is not positioned correctly in my chair or bed, I will end up straining my neck and shoulder muscles to stay balanced or to reach the joystick or controller. The sustained straining of those muscles slowly lead to cause headaches until the tension can be relieved.

Headaches can also be caused by eyestrain from the screen being too bright, not enough light in the room, uneven light in the room (such as an open window only on one side) or not sitting up enough so that the eyes are straining to look down at the screen.

I hope some of these spinal health tips have been helpful for others – and would love to hear other suggestions in the comments below. Cheers!

Last week, the Inclusive Futures: Reimagining Disability team welcomed Aunty Lauraine Barlow to the position of Cultural Steward and Research Advisor.

Aunty Lauraine Barlow is a decendent of Mandingalpa Clan, Yidiny tribe and Rimanggudinhma Clan, Lama Lama tribe in North Queensland. Her Aboriginal name is Jana-n Mandingalbay / Jigiddirri Jigiddirri, which means “standout willy wagtail”. Recently, she was honoured with a third name, Buligud, which means Grandmother.

Aunty Lauraine has experience of chronic illness and disability, both personally and in her family members. She has always participated in research, but as more than just a ‘subject’ of research. She is a community researcher, who takes control of the way in which research is conducted, so it remains respectful of her people and the land of her ancestors.

She promotes the use of art as a medium for sharing healing stories. She is a healer herself, and has completed her qualifications as a Health Worker, a telephone counsellor, a community health promotion consultant and peer leader of self-management courses. She has helped hundreds of Indigenous women with illness and disability to regain their strength and culture.

Aunty Lauraine has a long history with Griffith University, having first advised on a research project in 2003. Since that time, she has continued to support research projects and ensure that proper protocols are followed.

Images:

Aunty Lauraine Barlow, daughter Melanie together with Professor Elizabeth Kendall, Director, Inclusive Futures Reimagining Disability, Griffith University.

Griffith Inclusive Futures: Reimagining Disability research alliance were proud sponsors of the Committee for Brisbane, ensuring people with disability are involved at all levels of 2032 Brisbane Games legacy planning to achieve maximum accessibility.

Hon Dr Steven Miles, Queensland Deputy Premier and Minister for State Development, Infrastructure, Local Government and Planning described the government’s plan to build wide, unobstructed footpaths outside of venues, precincts and public spaces, with full accessibility and accessible transport to drive inclusivity and employment for people with disability.

Inclusive Futures Engagement Council member and Paralympian Katie Kelly said the event is a tremendous opportunity to challenge the status quo.

“Accessibility goes beyond our physical space – it's also about challenging the deeply entrenched and habitual mindsets and attitudes that hinder people with disability,” Katie said.

“One way we can challenge our thinking is to ask whose voice are we not listening to? Then we must ask ourselves why aren’t they at the table?

“We must find ways of bringing those people into the conversation because the best solutions will come from people who are most affected by the problem and live with access barriers on a daily basis.

Working to improve sport participation for women, gender diverse individuals and people with disability, Griffith Inclusive Sport and Recreation program lead Professor Simone Fullagar said major sport events can be a catalyst for addressing stereotypes about disability.

“The event highlights the need to ensure people with disability are involved at all levels of legacy planning processes to contribute expertise and design insights from lived experience,” Professor Fullagar said.

“Pursuing opportunities to change our city requires an understanding of how different bodies navigate sport spaces and what inclusion feels like, as a sense of belonging, safety and being heard.”

Highlighting the potential and complexity of issues we face as we move forward towards the Games, Vice President of Griffith Industry and External Engagement, Dr Peter Binks delivered a rousing acknowledgement of Griffith’s The Inclusive Futures: Reimagining Disability team, researchers, citizens with lived experience of disability and Director Professor Elizabeth Kendall.

“The core of our research is citizen-led co-design and the solutions (and in fact the questions) are so different when they are led by people with disability,” Professor Kendall said.

“Inclusive Futures: Reimagining Disability members are willing to help the Committee For Brisbane to adopt a solid co-design approach to inclusion and accessibility.

“Thank you to the Committee For Brisbane, the Panel and audience who contributed such impactful discussion.”

If you’d like to work with Griffith Inclusive Futures: Reimagining Disability or connect with citizen scientists and co-designers with disability, please reach out by emailing: inclusivefutures@griffith.edu.au

Authors: Monique Mita and Jo Kek-Pamenter

Image Description:

A montage of colour photos taken at the 'Roll, Stride, Ride & Glide: How to make Brisbane 2032 the most Accessible Games Yet" conference on Tuesday 18 April. This assortment of images shows the panel of speakers, and guests of Inclusive Futures: Reimagining Disability, Griffith University enjoying the event, including (1) Professor Elizabeth Kendall, Director IFRD together with Brad Kinsela GAICD, (2) Panel speakers on the stage, (3) Paralympian Katie Kelly OAM PLY with Paralympian Michael Dobbie-Bridges PLY (Panel Moderator), (4) IFRD table including Coral Gillet, Researcher, (5) Brad Kinsela with Prof Simone Fullagar, (6) Peter Binks from Griffith University addressing the congregation and bottom right the Griffith University logo on a red background.

Today, 11 April, Inclusive Futures: Reimagining Disability are observing #WorldParkinsonsDay.

Parkinson’s Disease is considered the fastest growing #neurologicaldisorder in the world. It currently affects over 8.5 million people, a number that has doubled in the past 25 years.

Some interesting facts about Parkinson’s that you may not know:

There are more than 100,000 people living with a diagnosis of Parkinson’s in Australia; Around 13,000 new cases are diagnosed each year; these numbers will increase by more than 60% in the next 20 years. Fifteen per cent of people living with Parkinson’s are of working age and there are more than 2,500 people in their 30s and 40s living with the condition. Up to 15% of people with Parkinson’s may not know that they have it. The total annual economic cost of Parkinson’s to Australia is estimated to exceed $11 billion; this is considerably more than that of Breast Cancer or Prostate Cancer.

Our guest authors in this month's blog are two people that understand Parkinson's Disease very well;

Prof. George Mellick is a Professor of Clinical Neuroscience at Griffith University, who works on all aspects of #neurodegenerative disease with an emphasis on Parkinson's Disease. George has, for many years, been an #advocate for people affected by Parkinson’s Disease. He is currently the President of Parkinson’s Queensland and Parkinson’s Australia, the peak State and National not-for-profit advocacy groups supporting the Parkinson’s community.

Prof. Elizabeth Kendall is a #psychologist and Director of Inclusive Futures: Reimagining Disability. Elizabeth cared for her mother, who bravely battled Parkinson's Disease for over ten years.

Prof. Kendall has built a long-term research agenda in #rehabilitation and service systems for people with #disability or chronic health conditions. Elizabeth is also the founding Director of The Hopkins Centre, based on a 30-year relationship between the Motor Accident Insurance Commission (MAIC), Metro South Health and Griffith University. She is a Board Director of Connectivity, raising awareness and appropriate treatment for #BrainInjury and has been on the working party founding the National Disability Research Partnership (NDRP). She is also working on Universities Enable, an initiative designed to promote the #inclusion of people with disability in universities as staff and students.

Our community needs to learn more about Parkinson’s to help improve the lives of all those impacted by the disease. Contact a Parkinson’s organisation near you and show your support. In Queensland, the community based not-for-profit, Parkinson's Queensland Inc. provides information and support to those impacted by Parkinson’s. The national organisation, Parkinson's Australia Inc, advocates across the country to improve the life and wellbeing of people affected with Parkinson’s and related neurological disorders.

Read the story in full on Griffith Enlighten: https://enlighten.griffith.edu.au/what-its-like-to-live-with-parkinsons-disease/

Imagine losing your sight.

In Australia, over 13 million people have one or more chronic eye conditions with close to 500,000 living with a vision-impairment or blindness. Ninety per cent of these cases are preventable or treatable if detected early.

‘Last Seen’ is a collaboration between the Queensland Eye Institute Foundation, Griffith University and Publicis Worldwide.

This poignant and inspiring creative showcase paired vision-impaired Australians with renowned artists and composers to depict their last, or most cherished, visual memory before their sight deteriorated.

The Queensland Eye Institute Foundation is the state’s largest independent academic research institute devoted to eye-related health and diseases. Relying solely on the generosity of donors, businesses and the community, proceeds from the evening, including a live auction of artworks, will support a focus on inherited eye diseases and the creation of Queensland’s first genetic eye diseases register to connect patients with clinical trials.

Griffith University is pleased to partner on this inclusive project, pioneering new ways for the visually impaired to experience and access the arts. Bringing together our Griffith University Art Museum, Queensland College of Art, Queensland Conservatorium and Griffith Film School, this partnership is a commitment to creating positive, meaningful change in our community.

We are grateful to Jane Britt, Oliver Fanshawe, Eleanor Lee, Michael Lyddiart, Alan Nemeth, Lorin Nicholson OAM, David Truong, Dr Jeff Usher, Santiago Velasquez and Inclusive Future’s Engagement Council member Katie Kelly OAM PLY for sharing their stories, including artist Tracie Eaton, who captured Katie’s memory of Merewether Baths in Newcastle (pictured), which raised $11,500 in the live auction.

We are in awe of the talented artists who took the time to not only produce incredible works of art, but also add accessibility into the exhibit, by including miniature tactile versions of artworks including texture, mixed media and braille, along with headsets where attendees could listen to audio descriptions.

Thank you to Professor Analise O’Donovan - Pro Vice Chancellor (Griffith Health) for the kind invitation and Claire Stokes – Director, Industry and External Engagement (Health) for being a generous host. We would also like to thank Anna Cottell; Rhonda Ganko; Professor Linda Agnew - Dean (Academic), Griffith Health; Warren Agnew; and Paul Poree for giving their time and joining us for this impactful evening.

We also extend sincere gratitude to Vice Chancellor and President Professor Carolyn Evans, for her kind words about the Inclusive Futures Research Alliance in her speech, and to Anna Cottell, who has very kindly funded an Inclusive Futures: Reimagining Disability Scholarship for students with disability.

Find out more or apply via our website:
https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability

Visit the ‘Last Seen’ website: https://lastseen.com.au