Dear reader, I have occasionally weaved strands of others' experience of Parkinson's Disease (PD) into my own Blog posts. So, although I have an idea of a post's content when I start, I seldom have a view of its end, as illustrated in the picture above. I connect the dots so a clear picture emerges. Well, the spark for this story was created by a friend (thanks, RobinT) who wanted specific info about PD. While researching his "dot" a few others jumped out and post 52 was created.
PD impact
According to the Parkinson's Foundation, USA, the following PD statistics are significant:
- Men are more likely to develop PD than women;
- There are almost 1 million people in the USA with PD;
- Annually, nearly 90,000 US people are diagnosed with PD;
- Worldwide, over 10 million people are living with PD;
- The annual US cost of PD (including lost income) is about $52 billion per year; and
- PD medication is an average of $2,500 (±R50,000) per person per year in the USA.
I have shared these statistics because some countries, like the USA, value the health of their workforce more than some others do. And what the US has achieved for people with PD through the Michael J. Fox Foundation (MJFF) programme is extraordinary: acute PD awareness at public and government level and a billion dollar fund to support and drive PD research and development. Take many bows, Michael J. Fox!
But, not all countries have a PD research and development initiative the size and commitment of the MJFF. For instance, Parkinson's issues requiring chronic treatment in South Africa, point one in the direction of a neurologist at either a public hospital, private practice or to some form of holistic health practitioner. National statistics or support is not easily accessible or available and I would be surprised if local clinics could assist. Also, little appears to have been done to dispel the stigma attached to those with PD in some South African communities. Based on US statistics, the cost of PD treatment per person in South Africa would be between R25,000 and R50,000 if you knew where to go and could afford it.
PD: some causes & treatment
A cynical side of me believes that any pesticide research will result in minimal consequences but greater "resistance" by those manufacturers and more work for their legal staff. There could also be opportunities for what I regard as the PD over-the-counter "treatment industry" and anecdotal evidence, especially where there are multiple applications, such as with CBD oil. Surgical 'treatment options', however, are more complex and validated through research.
For example, I could have surgery involving deep brain stimulation (DBS), where implanted electrodes in my brain and a connected neurostimulator in my upper chest area, together, attempt to regulate some of my movement disorder symptoms. Whether my 'treatment option' is invasive, such as deep brain stimulation or non-invasive, such as ultra-sound therapy, the outcome may be similar: I may have to supplement my 'treatment option' with pharmaceutics, that may have side-effects on me and my PD. Sigh!
On a positive note from the DBS research world, a recent (2024) analysis that is entitled Revolutionizing Treatment: Breakthrough in Brain Circuit Mapping... reported the following and here is an excerpt.
"By analyzing data from the 534 DBS electrodes implanted in 261 patients across the globe, researchers have pinpointed the dysfunctional circuits within the frontal cortex associated with each disorder. This meticulous mapping has not only revealed the optimal networks for therapeutic targeting but also demonstrated partially overlapping circuits across these conditions. This suggests that interconnected pathways are disrupted, underscoring the complexity of brain disorders and the need for precise treatment approaches."
Impressive! The above observation and analysis on "pathways [that] are disrupted" is useful because of the broad scale of their sample (261 patients worldwide) that has led to a valuable outcome. In the same analysis is the further observation in which the DBS treatment analysis has been refined. It is cited below.
"Initial findings from this study have already led to significant improvements in patients, including a young woman with severe OCD. These outcomes highlight the transformative power of understanding the brain's circuitry in developing more effective and personalized treatments."
Obsessive compulsive behaviour (OCD) and even Attention Deficit Hyperactivity Disorder (ADHD) are mental health conditions resulting from "dysfunctional circuits" that are costly to treat. I cited the Parkinson's Foundation statistics and the astronomical costs at the beginning of this post: the annual cost of PD treatment in the US is "$52 billion" as well as mentioning the sophisticated levels that DBS treatment and analysis have reached. But let's explore another connection: one between ADHD and PD and their respective treatments.
A significant 'treatment option' for PD in adults is the use of Ritalin (also known as methylphenidate or MP) prescribed primarily for ADHD in children. One research study (2004) on the use of Ritalin to treat Parkinson's Disease indicates that it may improve "cognitive, affective and motor deficits in PD". Another 2009 study (...Ritalin may improve Parkinson's Symptoms), indicates that Ritalin "bolsters the effects of levodopa". The Davis Phinney Foundation newsletter in 2018 states that Ritalin could be "use[d] for fatigue in Parkinson's", the latter being significant as fatigue is a serious issue amongst people with PD! This provides a useful 'treatment option'.
Concluding thoughts
Dear reader, realistically, I cannot really conclude anything constructive except to offer this observation. If finding secondary applications for some pharmaceutics (such as MP/Ritalin) with which to treat PD is the job of PD research, then how is that information supposed to filter down to a clinic healthcare worker or holistic medicine practitioner in South Africa. There is no national infrastructure for movement disorders (like the MJFF) and little national support for us people with PD. I am reliant on the goodwill, support and expertise of South African non-profit organisations such as Parkinsons ZA (weekly meetings) 👍 and Movement Disorders Support (online support) 👍.
So, if 'treatment options' such as Levodopa or an Ayurvedic substance or a photobiomodulation patch work for us, then we should stick with it and be grateful for the benefits, right? If it doesn't, then we ought make detailed personal notes before changing our medication/neurologist/diet/lifestyle/exercise/pet/😐/etc. No-one is really sure about how to treat me, an individual person with Parkinson's, bar applying their general, specialist knowledge, involving a "gold standard" of some sort touted by some company watching their profit margins.
Till next time, dear reader...
Ari Naidoo
BORN: 30 March, 1952
PD DIAGNOSIS: 2013
2020: started this blog
2024: struggle to type/walk/dress/bathe/balance (Sigh!)
