Navigating Grief: The Unwavering Strength of Teresa Heinz Kerry.

Family members share their struggle with motor neurone disease

Motor neurone disease (MND) is a rare degenerative disease that affects the central nervous system. The most common type of MND is amyotrophic lateral sclerosis (ALS), which affects movement, causes muscle weakness, and leads to eventual paralysis. This disease has no known cure, and its average life span is just over two years.

The Experience of Kerry’s Family

Kerry lost her ex-husband in 2017 and her daughter in 2020 to MND. Her youngest son, Lincoln, has the same disease, leaving the family devastated as they have seen three members live with MND. Kerry narrated her son’s struggle to breathe, move, and perform some basic tasks. Many families that live with MND face similar struggles.”He gets short of breath very quickly. I don’t quite know what’s happening to his body, except it seems that it’s just getting weaker and weaker.

Challenges in Diagnosing MND

Getting a proper diagnosis is crucial in managing MND. However, misdiagnosis is common with this life-threatening condition. Despite her family’s history with MND, doctors took a while before diagnosing Kerry’s daughter, Jessica. The neurologist initially thought it was due to stress, which is not uncommon. MND symptoms can vary, and patients often downplay their symptoms, leading to a delay in diagnosis.

Lack of Awareness of the Disease

The lack of awareness of MND can hinder funding and research to find a cure. Diagnosis and treatments also vary due to different levels of access to neurological care depending on a person’s postcode. In some parts of Australia, getting access to neurological assessment is still very challenging, and sometimes patients wait for years to get the required attention.

The Path to a Cure

While there is no known cure for MND, there is medication, therapy, and trials to support patients. Research and funding for disease management come from government and private organizations and charities. Currently, there have been trials exploring the effectiveness of IVF testing and pre-implantation genetic diagnosis to detect genetic forms of MND.

Fighting MND

Recognizing the inadequate funding and lack of awareness of MND, FightMND is a group aiming to shed light on this disease. The AFL’s annual Big Freeze event is one of the many events that the organization holds to generate funds. Co-founder and AFL great Neale Daniher, diagnosed with MND himself, is committed to fighting MND and raising awareness.

Dealing with Grief: Finding Strength and Advice

It is never easy to deal with grief, especially when one is watching a loved one’s health deteriorating. In the case of MND, it affects patient’s movement, speech, and breathing while impacting the family’s mental and emotional well-being. Many families undergo counseling and therapy to help them navigate these challenging times.

Finding Strength in Grief

The strength to move on comes from within. Kerry, who has lost her ex-husband and daughter to MND and watches her youngest son struggle with it, draws strength from coming home to a furry friend and painting. Everyone has a unique way of coping with grief, and it’s essential to find the right support system and activities that help throughout the journey.

Final Thoughts

MND is a debilitating disease that not only affects the patient but also the family members. Dealing with MND requires patience, determination, and support. It is crucial to get diagnosed early, although it is common for this disease to be misdiagnosed. In the end, finding strength amidst grief plays a substantial role in the journey of living with or supporting someone battling MND. As Dr. Dominic Rowe says, “The disease is not incurable. It’s underfunded, but not incurable.”