A non-pharmacological approach for Huntington's disease. Why not?
For many years, the community has relied on a pharmacological approach to manage manifestations of Huntington's and Juvenile Huntington's disease. Without question, it is paramount that patients who need medications for chorea, depression, anxiety, etc., should continue the regimen provided by their medical professional(s). However, over the last year, WeHaveAFace decided to broaden awareness of other beneficial ways to enrich our patients' lives through lifestyle changes, nutrition, physical exercise, cognitive stimuli, and so much more. It is also imperative that environmental factors be included in the equation for adequate "positive" results.
What do we know? What have we learned?
The debate as to whether a healthy lifestyle change (as mentioned above) can provide a positive outcome is a moot point, or at least I believe it is. Through scientific studies, we can see that positive lifestyle changes can indeed help with disease progression and quality of life. We are blessed to have the support and experiences of some incredible international medical professionals who openly discuss this direction in tandem with a medication regimen.
Listen to our latest WeHaveAVoice Radio Shows:
Dr. Bird (University of Washington), and Dr. Lange (George Huntington Institute - Germany)
"What in the environment can be influencing or impact the disease...alcohol, and drugs tend to have earlier onset... If you are raised in a dysfunctional environments, or social environments...that can impact the disease."
BDNF - Brain Derived Neurotrophic Factors, was also discussed within the context towards a non-pharmacological approach.
We truly thank Dr. Bird and Dr. Lange for discussing the importance of a healthy lifestyle and environmental factors.
To further this subject matter, I believe it is essential that every Huntington's disease medical professional read Dr. Bird's book: "Can You Help Me? Inside the Turbulent World of Huntington Disease"
Among the many beneficial topics within this book is a special chapter called: "Enjoy the Moment," which provides hope and inspiration for patients with Juvenile Huntington's disease.
"...just because you have the diagnosis of this disease doesn't mean you can't do enjoyable things." Dr. Bird
Also, take the time to visit Dr. Bird's Nest. Dr. Bird's fantastic Blog is so inspiring!
In June 2020, writer, Larry Luxner of the Huntington's Disease News, published the following news story on Dr. Herwig Lange: German Researcher Promotes Non-drug Alternatives for Treating Huntington's. The news article highlighted the scientific views of Dr. Herwig Lange on the importance of a healthier lifestyle.
"Lange said that he cannot overestimate the importance of a happy and healthy lifestyle for people with the disease. This means maintaining a healthy body weight, doing moderate physical and mental activity, getting enough sleep, reducing stress, and using relaxation techniques and psychotherapy — as often and as much as the patient is willing to do."
WeHaveAFace has also been in communication with an outstanding researcher, Dr. Travis Cruickshank (PhD - Research Fellow), of Edith Cowan University, Perth, Australia. Dr Travis Cruickshank is a neuroscientist and exercise scientist within the Collaborative Genomics and Translation Group and Exercise Medicine Research Institute (EMRI) at Edith Cowan University. He also leads the Huntington’s Disease Research Group and the Lifestyle Enrichment Division of the Collaborative Genomics and Translation Group at Edith Cowan University. Dr Cruickshank is also a principal investigator on the Systematic Profiling in Neurological Disorders Trial. Dr Cruickshank’s research is dedicated to the design, delivery and evaluation of novel non-pharmaceutical treatment strategies as well as the validation of novel clinical endpoints for individuals with chronic neurological conditions and cancer. In addition to his clinical research, part of Dr Cruickshank’s research portfolio is dedicated to examining predictors of performance in elite tennis players.
In speaking with Dr. Cruickshank, and Dr. Lange, we understood and agreed that a healthy lifestyle (as mentioned throughout this article) could provide benefits to disease progression and provide vital research data that would further explore a non-pharmacological approach for Huntington's disease. As per our conversation, Dr. Cruickshank mentioned critical components from this future research program: Exercise Training, Cognitive Training, Dual-Task Training, Healthy Lifestyle Guidance, and Socialisation.
WeHaveAFace sincerely looks forward to this educational partnership and collaboration with Dr. Cruickshank, and our fellow lay organizations in Australia. Dr. Cruickshank has agreed to be our guest on future episodes of WeHaveAVoice Radio, and WeHaveAFace TV to discuss his research initiatives.
Stay tuned for more information! WeHaveAFace will continue to roll out an educational platform for this very integral, non-pharmacological approach with Huntington's disease.