What were you told when you were first diagnosed with Parkinson’s disease?

I was diagnosed with Parkinson’s disease in 2018, but had many of its symptoms years before that. The first was loss of the sense of smell, but the symptoms that most affected my quality of life came in the 5 years before diagnosis: fatigue, daytime sleepiness, poor sleep, apathy, bad moods, confusion, urinary urgency, constipation, sensitivity to heat or cold and leg pain. All of these symptoms were initially attributed to something else. Apathy, sleepiness (laziness) and bad moods were personality problems, so my own fault. Urinary urgency was a prostate problem. Constipation was due to bad diet. Fatigue was just getting old…

The expert opinion changed with my first visible movement problems. My left leg was dragging behind and my left hand started trembling. I became stiff and slow. In 2018, my neurologist said I had Parkinson’s disease and many of the symptoms I had endured over the last 5 years were now attributable to Parkinson’s disease! Strange how expert opinion can change. At this point you might be tempted to ask your doctor: – “What can you do to control this disease?

– “Well, your brain cells that produce a neurotransmitter called dopamine have been dying off for years. You may have already lost up to 70% of these neurons”.
– “70% lost, like, well … lost at sea ? You mean dead, Doctor?
– “Yes, it’s a neurodegenerative disease and you will lose more each year.

And what causes these brain cells to die?
“The cause is unknown…” your Doctor may reply. “and there is currently no therapy to slow or stop it progressing.

Look it up on the internet. All the big Parkinson’s web sites say the same thing.
It’s all so simple and logical. It’s not the Doctor’s fault. Just bad luck really.

Your doctor may have prescribed some pills to help replace some of the lost dopamine. They will help with the symptoms, well, some of them, for a while.
“Your next appointment will be in 6 months, have a nice day”.

What your Doctor really meant is that he or she doesn’t know and cannot be bothered to look into the possible causes” and since there is no approved therapy”to slow progression, you are on your own.

So let’s just think about this for a moment. We started out with about 400,000 dopamine-producing neurons, so we have already lost about 280,000 which leaves about 120,000 still alive. If this is right, Parkinson’s disease is just a lottery. It’s like losing pennies through a hole in your pocket. You didn’t notice it happening and now you’re nearly broke.

Now, Dear Parkinson’s disease experts, with all due respect, “Do you really expect us to swallow that?”

The Patient Researcher is not an expert in Parkinson’s disease, but for many years he was an expert in another field of science. His very first task, as a research student, was to question established knowledge from a previous era, still printed in the best text books. It didn’t seem right, like the sun going round the Earth, but there wasn’t an obvious alternative. It was an enigma waiting to be solved.

It took him 2 years of measurements, calculations and creative thought to solve that enigma before an elegant solution was published in “Nature”. That solution then became the model for new established knowledge. It is often cited to this day, although the present interpretation is even more elegant. So, one of the first lessons I learned as a young scientist was to question what the experts say. And it doesn’t matter who the expert is, myself included. If the established wisdom doesn’t stand up to logical analysis, then whatever the experts say, it is probably wrong.

So, now think about the Parkinson’s neuron number’s game above. Does it add up? No, but it’s a great way to avoid the next question:
“What is the alternative explanation?”

If it were simply a game of declining numbers of neurons over time, wouldn’t that simply lead to a regular decline in health over the years without all these highs and lows, good days and bad days that Parkinson’s patients fear so much? Why would sleep, diet, stress or exercise make any difference?

“Could an alternative explanation be that neurons somehow get sick or damaged long before they die? Wouldn’t that be more reasonable? And if that were the case, maybe some of the 70% “lost” neurons might still be alive but simply too sick to function properly? Wouldn’t that make more sense?”

As their host ages, neurons, unlike many other cells, are not regularly renewed, but also grow old. Neurons carry with them the scars of a lifetime of service”.

A quick look at the research going on to understand neurodegenerative diseases reveals many possible causes. One that stands out above the others is that neurons are constantly being damaged by aggressive chemicals produced as by-products of cellular function, because the system that should normally eliminate them is not working properly. These chemicals are called free radicals and Reactive Oxygen Species (ROS) or Reactive Nitrogen Species (RNS). They are highly aggressive oxidants… just like like bleach! The system that is failing to eliminate them uses a process that activates gene expression which produces antioxidants right inside the cells. In neurons of people with Parkinson’s disease, this system, which I call the Redox Balance System (RBS) is no longer working properly. The ROS and RNS then cause oxidative stress which damages various cell components, especially mitochondria. This causes inflammation and eventually cell death.

Can we do anything to reduce this oxidative stress or repair the system that should normally take care of it? Well not officially, remember there is “no approved therapy.” However, many researchers agree that there are ways to repair the Redox Balance System and so slow down the progression of PD. They also know which type of medication is likely to be effective. One of the most promising substances is called sulforaphane, an isothiocyanate that can easily be made from broccoli seeds or sprouts. It has been tested in laboratories and on animal models of Parkinson’s disease and has been shown to be effective, but has not been clinically trialled on humans with Parkinson’s disease, so it remains “not approved”.

In the last 3 months of 2020, a small number of pioneering Parkinson’s patients decided to test whether sulforaphane would do the job. They purchased their own seeds and equipment and followed the same method to make and ingest a broccoli seed tea containing sulforaphane and record their PD symptoms. The results of this self-supervised test showed very clearly that their non-motor symptoms were strongly reduced in just 6 weeks, whereas their motor symptoms remained almost unchanged. Remember that non-motor symptoms of Parkinson’s disease are those that other people do not see, like fatigue, sleep problems and urinary incontinence.

So what happened? Does this suggest that some dysfunctional neurons were beginning to function better? “Perhaps they were not all dead after all?”

Now, the beneficial properties of sulforaphane have been known for more than 10 years, but it remains “not approved” and is unlikely to get approval because it is very cheap to make and cannot be patented. Maybe it’s about time for Parkinson’s patients to get angry and question what the experts are telling them.

You can read more about this in other posts and documents on this site.

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Research scientist with Parkinson's disease exploring transcription factor Nrf2 activation to stop PD progression. See patientresearcher.com for more details.

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