How I beat my Parkinson's Disease

2018/5

Ever since I achieved my own freedom from the strictures of Parkinson’s I have felt compelled to inspire others living with neurological conditions to do whatever they can to essentially “stick their finger up” to whatever it is they face.  This has brought criticism from some quarters initially; it has often been said that I am attempting to provide “false hope”. 

My take is that I was more likely to have the best possible quality of life while I still had Parkinson’s if I gave myself at least a fair chance (in fact I was certain) of defeating it, provided of course that this hope was based firmly in science – even if therapies flowing from that science were not yet accepted as part of collective “Standards of Care”.  My stance is that any hope in the mind of someone living with these conditions gives that person a reason for getting up each day and for making an effort; surely much preferable to the status quo in which those diagnosed with degenerative conditions are set on a path of progressive decline largely without hope.  I believe strongly that the latter is a self-fulfilling mindset, and ‘mind-set’ is key to quality of life for sufferers and their families.

For more insight into this I recommend a viewing of a short TEDx video clip by Dr Libby McGugan titled “Intentional Medicine – shifting the focus of healthcare” (https://www.youtube.com/watch?v=JEpEb0ztJOY).  It focuses on a case of a wonderful woman who was able to recover from Locked-in Syndrome.  The inspirational case studies discussed in Dr Doidge’s books also provide beautiful examples of people who don’t accept the inevitability of outcome normally associated with many diagnoses. 

My first attempts to provide hope to people and to encourage them in finding ways that worked for them to build a better quality of life were directed at talking to Parkinson’s Support Groups in Tasmania as well as to a number of Community Organisations.   

I also managed to facilitate John Pepper coming to Tasmania and talking to many people in the North and South of the State.  He is a remarkable person who makes huge efforts to pass on his knowledge.  In order to function normally, John has still to remain mindfully involved in the techniques that allow him to overcome the effects of his Parkinson’s.  I remain in awe of his ability to do this for what is now approaching two decades.  I only had to use this mindful approach for a few years, and now no longer need to.  John’s own book (Reverse Parkinson’s – see John’s website) and chapter 2 in Dr Doidge’s “The Brain’s Way of Healing” speak for themselves; I commend them to you. 

I now talk to many individuals and couples living with Parkinson’s and other neurological conditions, rather than to larger groups.  I have been able to get to know many wonderful people who desire to explore the possibilities of red and near infra-red light therapy (for more information on therapeutic use of light – Photobiomodulation – check out Chapter 4 of The Brain’s Way of Healing) and Integrative / Functional Medicine.  I am grateful to find that my own achievement with Parkinson’s provides opportunities to inspire others. 

I want to emphasise just how difficult it was to defeat my Parkinson’s; my wish is that I could translate my personal outcomes easily to others.  Realistically, in the case of Parkinson’s, at this stage, this is not easily done.  However, there is every opportunity to make a difference in lives by focusing on approaches in addition to appropriate medication that have a capacity to improve day to day living. 

I now often get requests from people to talk to them about my story and the possibilities for improvement that are usually not available if they constrain themselves to mainstream medicine.  Many of them are dealing with neurodegenerative disease and some with non-degenerative albeit devastating conditions like brain injury and migraine. 

In the case of Parkinson’s, light therapy is showing real capacity to make a difference.  Don’t look for large double-blind placebo-controlled studies – it is too early for that yet, and at best it will be years before that level of information is available.  There is a growing body of experience and some empirical evidence that supports the efficacy of this approach.  

Many of the improvements from Photobiomodulation for Parkinson’s are subtle but family members often see the return of a spark in their loved ones along with improved function.  For anyone interested in pursuing light therapy as an adjunct to medication for Parkinson’s I recommend two sources of information. 

A Canadian company Vielight makes a range of devices with their model the Vielight Neuro Gamma being recommended for Parkinson’s and other neurodegenerative conditions like Alzheimer’s.  They are not cheap but have been able to help many people.  See their website “vielight.com”. 

I also recommend a blog https://redlightsonthebrain.blog/.  It provides information on red light therapy, including instructions for assembly of a home-made device using a modified bucket as a holding device for red LED light strips.  If you are interested and are either handy yourself or have someone who is, the blog provides a means of getting to use light therapy at an affordable price.  Early indications are that light provided by either the Vielight or home-made devices can help. 

Some documented improvements (yet to be published) are: 

• Reduced REM Sleep dysfunction 
• Improved ability to socialise 
• Improved gait 
• Reduced tremor, and 
• Statistically proven improvement in handwriting. 

I have helped a few people with significant impairment of both physical and cognitive / psychological functioning post stroke to access and use light therapy.  One individual has recently been able to return to full time work as a tradie after a number of years at a level of disability that made even walking without falling problematic. 

I am fortunate to be a means of bringing information and inspiration to people with significant neurological problems and for whom in some cases, little is currently able to be offered through our health system.  I commend a paper by Professor Michael Hamblin who is generally seen as the guru on Photobiomodulation worldwide.  His paper “Shining lights on the head: Photobiomodulation for brain disorders” is very informative as it summarises the current understanding of how the observed therapeutic effects happen and offers predictions about how this therapy may progress in the years to come. 

Chris Lacey
7 May 2018