I recently watched a documentary on the life and work of Justin Yerbury, a basket-ball player turned scientist who has motor neuron disease (also referred to as ALS) and is seeking a cure. It was aired on ABC and called The Enemy Within – Australian Story
When Justin Yerbury’s family members began to die from motor neurone disease he made a life-changing decision.
He turned his back on a professional basketball career and enrolled in a science degree. Almost 20 years later, he is an internationally recognised expert on the disease, leading the way in the search for a treatment.
Recently, however, Justin’s work took on a terrible urgency as he too developed symptoms of MND.
As Australian Story filmed with Justin and his family, his condition deteriorated dramatically, requiring difficult decisions to enable him to continue his search for a cure.
Having met Justin in 2017, Professor Stephen Hawking recorded the introduction to this story shortly before his death from motor neurone disease.
(the Australian spellings are neurone instead of neuron and recognised instead of recognized)
I felt very moved by his story and work and felt compelled to reach out to Dr. Yerbury to share what I have learned about this condition in the last few years. I know of a number of practitioners who work with individuals with this condition and even some colleagues with family members who have been diagnosed with this condition. I have also had enough queries that it’s time for a blog post on the topic so you are informed too.
What is Amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND)?
Let’s start with the fact sheet on Amyotrophic lateral sclerosis from the NIH (National Institute of Neurological Disorders and Stroke). They describe ALS as follows:
Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.
ALS belongs to a wider group of disorders known as motor neuron diseases, which are caused by gradual deterioration (degeneration) and death of motor neurons. Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles.
I encourage you to watch the 30 minute program if you want to learn more about this condition and Dr. Yerbury’s work (they call it MND rather than ALS in the documentary.)
You may also be familiar with the life and story of Professor Stephen Hawking – he had ALS or motor neuron disease.
Ketogenic diet for ALS?
Here is some of the information I sent to Dr. Yerbury, explaining my work as a nutritionist working with women with anxiety using nutritional psychiatry approaches. Many of these nutritional psychiatry approaches – such as the SMILES study – have been spear-headed in Australia by Professor Felice Jacka.
I’ve recently being looking at the growing research base on the ketogenic diet and mental health and when I saw his story on ABC my first thought was – I wonder if there is research on ketogenic diets and ALS/MND? After a very quick search I found these papers:
there are strong epidemiologic data showing that malnutrition is a common symptom of amyotrophic lateral sclerosis both in humans and in mice and may contribute to disease progression. There is also epidemiologic evidence that increased dietary fat and cholesterol intake might reduce the risk of amyotrophic lateral sclerosis and the rate disease progression. Finally, data from animal studies strongly suggest that increasing dietary intake of fat ameliorates disease progression. However, determining whether amyotrophic lateral sclerosis patients should be treated with a high-fat or ketogenic diet can be based only on randomized double-blind placebo-controlled interventional trials.
Metabolism-based therapy [which includes the ketogenic diet] has been used successfully in the treatment of seizures but study of its use in other neurodegenerative disorders [such as Alzheimer’s disease, Parkinson’s disease and ALS] is growing.
A gluten-free diet?
We must always consider gluten with every chronic health condition. There is a case report of celiac disease with neurologic manifestations misdiagnosed as amyotrophic lateral sclerosis:
he was diagnosed as having CD, and a gluten-free diet was immediately begun. At a 4-month follow-up, his weight and the quality of his stool had improved gradually, and the neurological manifestations had not progressed.
Another study reports that in certain cases, ALS may be associated with autoimmunity and gluten sensitivity, with elevated transglutaminase 6 antibodies in the serum of 23 patients.
GABA and 5-HTP: the Deanna Protocol
Awhile back I was contacted by someone in my community about the Deanna Protocol for ALS because it uses amino acids GABA and 5-HTP and other nutrients like niacin and CoQ10:
It is determined that the substances in the DP™ Plan provide energy to cells that are dying and in doing so keeps them alive. This is very important because when nerve cells die, they release glutamate which kills the contiguous cells. If too many cells are dying then we cannot supply enough energy to keep up with the rate of death of the cells. When the DP™ Plan is taken in sufficient quantities, it will support the nerves that are challenged by glutamate.
As you may already know I use targeted individual amino acids such as GABA and tryptophan/5-HTP with clients so I am very familiar with their therapeutic benefits for anxiety and I am fascinated they also ease symptoms in ALS.
There is an animal study supporting this approach: Metabolic therapy with Deanna Protocol supplementation delays disease progression and extends survival in amyotrophic lateral sclerosis (ALS) mouse model.
Anxiety and depression
There is also research indicating that psychiatric symptoms often precede an ALS diagnosis:
neuropsychiatric conditions are overrepresented in amyotrophic lateral sclerosis (ALS) patient kindreds and psychiatric symptoms may precede the onset of motor symptoms…. A diagnosis of depression was significantly associated with a first record of ALS ≥5 years later, in keeping with growing evidence for major depressive disorder as an early marker of cerebral neurodegeneration.
This doesn’t mean if you have anxiety or depression that ALS or another neurodegenerative disorder is in your future, because we can address so many of the root causes before we get to that diagnosis. Many of the nutrients in the Deanna Protocol will help both the person with ALS and the caregivers who also suffer psychological distress.
Environmental toxins and ALS
We recently spent 3 days at Shell Harbour just south of the Wollongong area and we loved it!
As beautiful as it was I couldn’t help but be concerned about the toxins being released into the air from the steel production plants. Dr. Yerbury lives in the area and is conducting his research at the University of Wollongong. I know toxins play a role in many diseases and wondered about an ALS connection. I found this paper: Association of Environmental Toxins With Amyotrophic Lateral Sclerosis
I also shared that I’m a total research geek and pretty passionate about the power of nutrition, lifestyle and environmental factors because this was how I was able to eliminate my own anxiety and panic attacks.
You can learn more about Dr. Yerbury and his publications here. We appreciate the work him and his research team are doing and thank him for sharing his story.
It would be wonderful if some of this information can help Dr. Yerbury and even be considered for future research by his very passionate research team. I also hope this information will be helpful for you or a loved one suffering with ALS or MND.