This week is Motor Neurone Disease (MND) Week, a time dedicated to raising awareness, support, and action for those living with this life-altering condition. As we join hands with the rest of Australia to acknowledge the impact of MND on individuals, families, and communities, we want to share our ongoing commitment to this cause and express our solidarity with all those affected.
Motor Neurone Disease, currently affects around 2,000 Australians. This statistic is pretty static as each day, at least two people die from MND, while another two receive their diagnoses.
MND, also known as Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease (predominantly in the USA), presents a range of symptoms that primarily relate to muscle weakness and loss of motor function. The onset of these symptoms can be subtle, often starting with a weakness in one limb, difficulty with speech, or trouble swallowing. As the disease progresses, these symptoms become more widespread and can affect the individual’s ability to walk, speak, swallow and, eventually, breathe.
People with MND may experience muscle cramps, twitching, stiffness, and weight loss. Emotional changes can also occur, including bouts of uncontrollable laughing or crying. However, it’s important to note that not everyone will experience MND the same way, and symptoms can vary widely from person to person.
While there is currently no cure for MND, early detection and intervention can significantly help manage symptoms and improve quality of life. Research is ongoing, with scientists worldwide striving to understand more about the disease, its causes, and potential treatments.
It’s critical for everyone, especially those with a family history of MND, to be aware of these signs and symptoms. If you notice any unusual changes in your muscle strength or emotional well-being, please seek medical attention promptly.
In a past life, long before I founded CoAbility, I had the privilege of working closely with many individuals living with MND. I am intimately aware of these brave individuals’ everyday struggles and have witnessed their resilience, strength, and spirit as they battle this condition.
I have experienced joyous moments with clients, such as seeing the excitement in someone’s eyes when they access eye-gaze technology for the first time. This groundbreaking technology allows people locked in their bodies with no way of communicating to ‘speak’ using only the movement of their eyes. To communicate effortlessly and expressively, once again, is a newfound freedom that they once lost to MND.
However, my journey with MND clients also had many challenging times that deeply impacted all involved. I have stood with individuals and families making heart-wrenching decisions to withdraw ventilation… decisions made after careful consideration of quality of life vs continued suffering. No one should have to make these decisions, yet for some with MND, it is a very real possibility. Witnessing these people’s strength in these moments fortified my dedication to the cause.
Throughout this MND Week, CoAbility pledges to intensify our efforts to support those living with MND in our community.
We strive to provide tailored, comprehensive support coordination services beyond meeting basic needs. Our approach involves sourcing physical, emotional, and social support to ensure those living with MND can lead dignified and meaningful lives. We can connect with providers who offer assistance with everyday tasks, provide adaptive technologies, facilitate therapeutic interventions, and connect individuals with communities for social support.
MND week is a perfect opportunity to unite as a community and raise awareness about MND. Attend one of the many MND Week events held throughout Australia, donate to MND research, or even take the time to learn more about the disease.
We encourage everyone within our community to remember that our collective efforts can make a difference, no matter how small they seem. Each shared story, each dollar donated, and each gesture of support brings us a step closer to a world without MND.
This MND Week, we stand together in the fight against Motor Neurone Disease. We stand for hope, we stand for support, and we stand for a future where MND has a cure.
If you would like to make a one-off donation to help find a cure for MND, follow this link.
https://www.mndaustralia.org.
