2018/3
For many people living with Parkinson’s and their families the non-motor impacts of the disease often exceed the very real impact of the motor deficits. I would like to share an additional insight that formed for me around how best to describe these non-motor effects that were so impactful in my own case.
I was sitting on stage with my back to the screen as Norman was running one of my little video clips. While observing their reactions I turned to check which bit was showing at that moment. It was of me moving in my lop-sided, very slow fashion, with no arm swing, no facial expression etc. It struck me that at that moment I was moving more like a slow and dysfunctional ape than a healthy human – which was all about the motor dysfunctions.
Thinking about that later it struck me that the core of the significance for me of these motor and non-motor deficits is that they struck at the heart of my humanity. The motor issues are usually readily apparent – all can see that the movements are not normal. The less apparent non-motor effects can be more obscure.
The diminution of cognitive abilities (even if only slowed down); the diminution of one’s capacity to both feel/experience and control emotion, the depression and anxiety, all reduced my ability to function as an adult human. The lessening of my capacity to love and be loved was perhaps most poignant. These effects undermine the very things that differentiate us most clearly from our forebears on the evolutionary tree. For me these non-motor issues were the most difficult to live with and often impacted those around me.
While I was at Dr Mark Rogers’ clinic in Adelaide one of the devices that used light to treat my inflammation was a Vielight Neuro; a device able to be used easily at home. During this treatment in Adelaide my partner Marjorie had arrived at the completion of an assessment by a Clinical Psychologist. The results indicated that there was a high probability that she already had diagnosable Alzheimer’s. I had been aware that she was having cognitive and memory issues for some time, but it was not until I was free of the Parkinson’s that I was able to see how significant the issues were for her. Her GP indicated that if it was verified that this was Alzheimer’s there was very little available conventionally to be done about it. The deterioration would continue inexorably. I purchased a Vielight Neuro primarily for her but also for my own use. We did not follow through on a visit to a Dementia Specialist as a diagnosis would have provided a label and little else; I knew there was a lot that could be done but all of it remains outside of the “Standard of Care”.
I need to also emphasise that Marjorie has not been diagnosed formally and that a Geriatrician who I have a great deal of respect for has suggested that her case may have involved very severe depression rather than Alzheimer’s. In both cases light therapy provided a useful intervention that did not involve the side effects of any drug regimen that may have been offered.
I was adopting the therapeutic use of the near infra-red light (Photobiomodulation) to provide greater assurance that I would remain Parkinson’s free. For Marjorie the imperatives were possibly far more urgent. She began to use the light in the hope that it could empower her system to fight off any degenerative process that was underway.
Within a couple of months Marj showed dramatic improvement in memory and in cognitive functioning generally. She began to “live” again.
Marjorie progressed very well in the first 8 to 10 months after beginning to use light daily, however, after that she appeared to be regressing somewhat. We have found an Integrative Medicine Practitioner in Hobart who has been trained in the Bredesen ReCode Protocol for identifying casual factors for neurological degeneration specifically involving Alzheimer’s. Each patient is assessed using the protocol and an individualised response developed.
In Marj’s case this involved considerable changes to her diet and using a number of carefully selected supplements – no pharmaceuticals.
She continues to function at a level greatly higher than before. Our understanding is that we must continue with these interventions or risk regression.
For any reader interested in understanding more about Alzheimer’s and where leading research has taken us in recent years, I recommend the book “The end of Alzheimer’s – The first program to prevent and reverse Cognitive decline” by Professor Dr. Dale E. Bredesen MD. I believe that while this work has been directed at understanding Alzheimer’s Disease much if not all, applies similarly to other Neurological conditions.
In December 2015 I was able to see my Neurologist, Dr Andrew Evans, and he was amazed by what he saw. We had been in touch through the period post recovery but seeing me face to face was significant. He could verify that I had not exaggerated my status in my communications with him. He called it a “remarkable story”. He could detect no evidence at all of the disease!
Later, after almost two years of disease free status and no medication, Andrew bravely documented his belief that I had RECOVERED. Amazing to have a Specialist Movement Disorder Neurologist confirm what I had believed myself for so long. How wonderful! Thank you Andrew. The document from Andrew is dated 25th May 2017. I have been remiss in that I have not yet had it framed.
While he is very interested in my progress over time, he can’t justify the precious clinical time which needs to be focussed on those still living with Neurological conditions, so I no longer see him.
That led me to ponder even more on the enormity of my achievement; very few people worldwide have recovered or arrived at a state of remission of their Parkinson’s symptoms. One thing is for sure – although extremely difficult, it is possible! I have read the story of John Coleman, another Australian who has recovered. He did it very differently and is now approaching twenty years of disease free living.
A remarkable story – look it up!
How I beat my Parkinson's Disease 