SO YOU'VE BEEN DIAGNOSED WITH PARKINSON'S DISEASE! WHAT DOES THAT MEAN?
Diagnosis (from the Oxford Dictionary online):
1. the identification of the nature of an illness or other problem by examination of the symptoms.
2. the distinctive characterization in precise terms of a genus, species, or phenomenon.
late 17th century: modern Latin, from Greek, from diagignōskein ‘distinguish, discern’, from dia ‘apart’ + gignōskein ‘recognize, know’.
When a doctor or specialist (neurologist, movement disorder specialist, gerontologist, or similar) looks serious and says, “You have Parkinson’s disease”, this is simply an estimation or classification based on examination, observation and, in some cases, a few tests.
Like all medical diagnoses, it is a “best guess” based on observable symptoms and experience. Nothing more. Even with recent advances in diagnosing Parkinson’s via voice apps, smell or bowel function, the aim is to diagnose a “disease” rather than causes of illness. It is still just a diagnosis.
However, our society, encouraged by the medical and pharmaceutical industries, has imbued this diagnosis with a great depth of complexity and prognostication that includes many, primarily negative, implications that are, in fact, not part of any diagnosis.
The words, “You have Parkinson’s disease” are immediately expanded to include:
1. This is an incurable disease;
2. We don’t know the cause;
3. I will inevitably get worse;
4. There are some drugs to help control the symptoms but they all have adverse effects;
5. I might need brain surgery because the medication stops working after a few years;
6. I can’t do anything to help myself;
7. The best I can hope for is some new, expensive drug, to suppress some of the symptoms;
8. There are all these famous people who are desperate for a “cure” and they can afford “experts”, so I know there is no hope.
All these horrid inevitabilities and more are seen as part of the diagnosis with Parkinson’s disease. But they are NOT part of a diagnosis. These are estimated outcomes based on very old experiences and stories, suppression of current knowledge and proven strategies, and denial of the real causes of Parkinson’s symptoms and ways to reverse them.
In modern terminology, we can call them a “prognosis”; that is, a forecast or estimation of the likely outcome of the diagnosed disease. However, Parkinson’s disease is not really a disease at all 1, but a group of symptoms gathered together in one little box and called a disease for convenience of treatment (if it has a name, there is a drug that can be applied and funds allocated). Therefore, there can be no accurate prognosis.
The so-called prognoses are really prognostications – that is guess work and witch-doctor predictions that are far from inevitable if people diagnosed are given appropriate advice, support, encouragement and treatment.
Some of these prognostications could be compared with the “pointing the bone” ceremonies used by Australian First Nations people to punish wrongdoers. If a person was told that they were the subject of “pointing the bone”, they would become ill or die.
These days, a diagnosis with Parkinson’s disease, combined with the socially/medically acceptable prognostications, is a form of “pointing the bone”. People diagnosed EXPECT to get worse, EXPECT to take ever-increasing doses of drugs, EXPECT to suffer adverse effects from the drugs, EXPECT to have to cease many enjoyable activities.
This is simply not good enough. It is not good care. It is not even honest.
We know many, if not most, of the causes of neurodegeneration. Parkinson’s is known as a neurodegenerative disease. 2
We know most of the causes of systemic inflammation. Parkinson’s is known to be an inflammatory disease. 3
If the research and support organisations working with all neurodegenerative and inflammatory disorders combined their efforts to trace, recognise, publicise and reverse the CAUSES of neurodegeneration and inflammation, no one would need to hear a diagnosis of Parkinson’s disease. Instead, we could be told that we have signs of neurodegeneration and inflammation, there are ways that we can find the causes and, once those have been identified, we will be able to develop strategies to reverse the illness process.
With cooperation, honesty and control over drug cartels, no one would have to go through what I and many millions of others have had to face – a diagnosis with a hopeless prognosis.
There is, of course, one enormous hurdle to overcome before this utopian health dream can be realised – Greed. Medications for specific diseases (approved by FDA, TGA and similar authorities) contribute $billions annually to the bottom line of Big Pharma, separate disease-specific support organisations provide employment for highly-paid executives, disease-specific research provides career pathways and funding for many senior academics and PhD candidates.
I have no doubt that many, perhaps the majority, of those involved in support groups, fund raising and non-drug research are sincere in their desire to improve life quality for those diagnosed and assist in finding a “cure”. Many doctors diagnosing and treating those diagnosed with Parkinson’s truly believe in their craft and do their best to alleviate misery. I am certain that many involved in research are sincerely searching for a “cure” for a disease.
I am equally certain the Parkinson’s is not a disease as explained above, there will never be a “cure”, and that information about the causes of neurodegeneration and systemic inflammation is ruthlessly suppressed by those who profit most from treating illnesses.
So you’ve been diagnosed with Parkinson’s disease – what does that mean? It means that you have symptoms manifesting from known causes and for which there are reversal strategies. It means that you have to take control of your life and health, be prepared to make significant changes, be persistent, determined, open to adventurous ideas and curious about innovative ways to improve your health.
A diagnosis with Parkinson’s disease means it is up to each individual to find their symptom-causes and get well.
1 Coleman John C; Rethinking Parkinson’s Disease, page 10; Hybrid Publishers, Melbourne, 2020
2 Coleman John C; Rethinking Parkinson’s Disease, page 35; Hybrid Publishers, Melbourne, 2020
3 Coleman John C; Rethinking Parkinson’s Disease, page 35; Hybrid Publishers, Melbourne, 2020