What actually is Parkinson’s Disease?

I have written a PD blog for a while and I very often get asked the obvious question – What is Parkinson’s Disease…It is important people understand it and are not lost in a world of confusion.

A few people have asked me this basic question in recent days, and others have admitted they have no idea. Most people simply don’t know. I find myself blogging about how I am coping, reacting to, and dealing with it. But… that obviously assumes some knowledge of what it is.

The truth is I had no idea at all when I was diagnosed, except for knowing that Michael J. Fox had it and that it involved tremor.

I am going to give an answer that is probably incorrect on so many levels but will try to keep it in plain English and devoid of the heavy language and terminology that is so often attributed to it. I will also talk a little about how it differs in so many people.

Dopamine

Most people have heard of dopamine or expressions such as a ‘dopamine rush’. It is sometimes called the “happy or pleasure chemical”. As the website at Harvard puts it, “Dopamine is most notably involved in helping us feel pleasure as part of the brain’s reward system. Sex, shopping, smelling cookies baking in the oven — all these things can trigger dopamine release, or a ‘dopamine rush.’ This feel-good neurotransmitter is also involved in reinforcement. That’s why, once we try one of those cookies, we might come back for another one (or two, or three).”

That unfortunately is not the whole story… the exact same article goes on to say:

“The darker side of dopamine is the intense feeling of reward people feel when they take drugs, such as heroin or cocaine, which can lead to addiction.” It adds:

“Dopamine also plays a role in these functions: learning and attention, mood, movement, heart rate, kidney function, blood vessel function, sleep, pain processing, lactation.”

An Inability to Produce Dopamine

Parkinson’s disease takes place in the brain, in its nervous system (jargon alert: for the budding scientists, it is in a key place called the ‘substantia nigra’), which is a network of nerve cells that control many parts of the body, including movement, emotional responses, and other functions.

These nerve cells die or become impaired, losing the ability to produce an important chemical called dopamine, as well as attacking other similar “neurotransmitter systems” in the same parts of the brain and also other brain regions.

Movement and Non-Movement

It is because of the impact on the central ‘transmission’ part of the brain and the loss of dopamine, which I described above, that it has an effect on so many areas of the body.

An Example

When I was being diagnosed, I had some real issues with my eyesight, and the hospital sent me to their eye clinic. I pretty much did every eye test over a half-day period, and their summary was basically stated as: ‘The good news is your eyes are fine, it is just your brain’. In simple language, the eye hardware is all good – the signals being transmitted from the brain are not. Overall – not so good 🙂

So Many Symptoms

As a result, there are simply so many downstream impacts as it is basically the communication system from the brain that is degraded/weakened.

One of my fellow Parkies said to me in response to a blog I wrote a few days ago: “Inspired by your above post Ben, I sat down and listed the ever-growing ways in which I am affected by PD. By the time the list was finished, I had in front of me 50 different symptoms, which was quite a shock! I think the only part of my body to have escaped the Parkinson’s hit list is my hearing!” He then followed up: “And, having realised that I don’t always appreciate that I’m speaking quietly, I think my list will now extend to 51!”

This seemed ridiculously too many when I first read it, but on reviewing the 23 categories provided by the American PD Association (below and linked here), I am scoring on 17. Due to the centrality of the nervous system and dopamine, it does damage to both motor and non-motor abilities.

Each of Us Has a Different Recipe and Speed

The transmission errors I mentioned manifest themselves differently in each one of us, at different times and at different speeds. For me, the balance, freezing, and slow movement have set in fast, the tremor much less so. This sadly disproves my daughter’s joke when I was first diagnosed. She asked me: “Daddy – what is your favorite drink?” Answer was “Milkshake”. She should have asked me my favorite movie… Answer… Frozen.

It is Progressive

The brain currently knows no way of repairing this loss of ability to make dopamine, and it progresses. Scientists are working incredibly hard to uncover the cause of this and try to reverse it, but it is an ever-worsening phenomenon.

So What?

This blog doesn’t pack a massive ‘so what’ value – it is largely boring facts, but it is important that people with PD, caring for people with PD, and those around them understand, I think, three things:

It is a fact that the disease takes root at the core of the brain’s wiring of its nerve and transmission hub – in a probably horrendously incorrect analogy, it is akin to a prolonged and ever-increasing cyber-attack on the core communication network of a country.

It is also important, I think, to know it hits the ‘happy chemical’. The emotional side of the disease is as important as the physical one. It causes people physical pain for sure, but it hurts emotionally – causing apathy, depression, despair, anxiety – it is a loss of dopamine.

The medication is basically an attempt to manage the symptoms (as opposed to curing them) by increasing the level of dopamine in the brain – either by pills, pump, or surgery. The rest of the medication treats the knock-on symptoms (e.g., the impact it has on the bladder, sleep, etc.)

Awareness is part of the battle. I felt it important in my own way to explain the basics of PD because it is something people dealing with patients need to know.

List of Symptom Categories

• Tremors
• Rigidity
• Bradykinesia (Slow Movement)
• Vocal Symptoms
• Oral Dysfunction
• Postural Instability
• Walking or Gait Difficulties
• Cognitive Changes
• Depression and Anxiety
• Disturbances in the Sense of Smell
• Eye and Vision Issues
• Fatigue
• Gastrointestinal Issues
• Lightheadedness
• Melanoma
• Pain
• Personality Changes
• Psychosis
• Sexual Concerns
• Sleep Problems
• Sweating
• Urinary Issues
• Weight Loss