The Parkinson’s ‘iceberg’ — what people don’t see
April is Parkinson’s disease awareness month. World Parkinson’s Day falls on 11 April. Why that day? It’s the birthday of English physician James Parkinson, who published the first detailed description of the disease in ‘An Essay on the Shaking Palsy’, in 1817.
Raising awareness of Parkinson’s disease (PD) is crucial, given its prevalence. It is the second most common neurological disease in Australia after dementia. The Shake It Up Australia Foundation provides this brief summary:
- The disease affects 100,000 Australians.
- 38 Australians are diagnosed with the disease every day.
- 20 percent of sufferers are under 50 years old and 10 percent are diagnosed before the age of 40.
- The number of people with PD has increased by 17 percent in the last six years with costs to the community increasing by over 48 percent.
- For comparison purposes, the prevalence of PD is greater than prostate, bowel and many other forms of cancer, and the total number of PD sufferers is four times the number of people suffering with MS.
Over the past few years I’ve done a few bits and pieces of awareness raising and advocacy:
- I founded a young onset support group for Parkinson’s ACT, convening a number of casual get-togethers.
- A couple of times a year my physiotherapist and exercise physiologist have students on placement for a month or two, getting hands-on experience in the latter stages of their respective degrees. I get the opportunity to discuss with them my experience of living with the disease, my symptoms, and what I’m doing to slow the disease’s progression.
- Each year, for the four years pre-Covid, I spoke to second year medical students at the Australian National University about my diagnosis and living with the disease.
- On three occasions, I presented as a ‘complex case’ for medical school fourth year exams. A student has an hour to take my history and examine me, before reporting to the course examiners.
- I am part of a research project team (with ACT Health, Canberra Hospital, and the University of Canberra), examining the needs of young onset people.
- I hosted a ‘come and try’ baseball event, raising over $2,000 for the Shake it Up Australia Foundation.
Essentially, I do what I can to inform people about the disease, particularly its effects on young onset people. And of course, I try to share that information without being an overwhelming pest! There is nothing worse than being belted by unsolicited facts, figures and information. But if you are interested and ask, then I will gladly share.
This April, and for this post, I want to outline and discuss the symptoms of PD. To most people, PD means tremors or shaking. It is an obvious, physical symptom. But tremor is just one of many symptoms!
PD is a debilitating, degenerative, incurable disease. The disease has numerous motor and non-motor symptoms, with quite a few not really obvious to the casual observer.
To raise awareness of PD symptoms, some support organisations have produced various versions of a graphic representation called the ‘Parkinson’s iceberg’. Typically, most of an iceberg is beneath the surface of the water and invisible. Similarly, many Parkinson’s symptoms are invisible to the average person.
I love information graphics, and the idea of the Parkinson’s iceberg graphic is very useful, however quite a few of the graphics out there have been poorly executed. Some have appalling spelling mistakes, some feature words or phrases that are meaningless or need further interpretation/explanation/research/googling.
You understand the whole iceberg idea though, right?! A few PD symptoms are obvious and visible, but most are invisible.
In my discussion below, I have separated the symptoms into what people see and what people don’t see. That is further broken down into motor and non-motor symptoms.
The bottom line is I want you, the reader, to understand that a person living with PD is dealing with a lot of things other than just a shaky hand.
Now, before I get into the symptoms, I’ll specify or clarify a few things:
- I won’t go into too much detail about each symptom. There are many excellent guides to symptoms on various websites should you wish to read more.
- Understand that the disease is caused by the loss of brain cells that produce dopamine, the key neurotransmitter responsible for physical and behavioural functions such as movement, coordination, mood, motivation, sleep, how we feel pleasure, and how we process pain.
- PD is different for everybody. No one will experience the same symptoms in the same way, and progression is highly variable.
What people see
The resting tremor is the classic symptom that most people associate with PD, where the hand laying at rest shakes uncontrollably at four to six cycles per second. Tremors may be mild and barely noticeable, or be seemingly obvious and exaggerated. They may be exacerbated by nervousness and anxiety. A tremor often begins in a hand or fingers, spreading to the arm and foot, and usually on one side of the body. Severe tremor can be in the jaw and lips. Over time, tremor will progress to the other side of the body.
What people see, but may not understand
People may see physical or motor symptoms, but not necessarily understand exactly what those symptoms are and how they impact a person.
Bradykinesia (slowness of movement)
The ability to move is reduced, often to the point of inability to function. It takes more time and effort to do just about anything. Simply turning over in bed can be very difficult.
Stiff or inflexible muscles, where the stretching and relaxing of muscles is reduced or stops, may impact the affected side of the body. A constant resistance to motion throughout the entire range of movement may be experienced.
Bradykinesia and rigidity are two of the main symptoms of PD and are essentially responsible for the symptoms below. Significant levels of fatigue result from both.
A person’s posture may be stooped. The stereotypical picture of a PD sufferer is a stooped old man.
There are several significant and observable gait symptoms, including:
- Freezing of gait, where a person cannot easily initiate a first step to get moving.
- Shuffling, where a person’s step length is vastly shortened and the foot is barely lifted off the ground.
- Loss of balance.
- Reduced arm swing, which happens when the impacted side slows down (essentially part of Bradykinesia). This can often be an early sign of the disease.
Loss of fine motor skills
A person’s fine motor coordination can be reduced. Handwriting may become smaller, it can be harder to do up buttons, tie laces, or simply get coins out of a purse. Keeping peas on your fork is hard at the best of times, but nigh on impossible when your left hand doesn’t work!
Hypomimia (loss of facial expression)
People with PD may have reduced facial expression or masking. You could call it ‘bulldog face’ or ‘resting bitch face’! Many people have a reduced blink rate. It’s a simple case of not having control of those muscles anymore.
This is a movement disorder in which a person’s muscles contract uncontrollably, which may cause body parts to twist involuntarily, resulting in abnormal postures. The condition can affect one muscle, a muscle group, or the entire body.
This last one is not directly related to slowness of movement or rigidity, but it is an obvious physical symptom of the disease nonetheless. Dyskinesia is uncontrolled, involuntary movement that Is associated with long-term dopamine replacement therapy (levodopa), and indeed over-treatment with levodopa. It is often seen in latter stages of the disease.
What people don’t see
Right, we’re at the invisible part of the so-called ‘Parkinson’s iceberg’, the symptoms that usually do not have physical manifestations obvious to the casual observer.
Motor symptoms that people do not see or may not notice include musculoskeletal pain, radicular pain, and also muscle spasms and dystonia (which may also be obvious as described above).
This is going to be a substantial list. I’ve tried to group them. Again, if you want more details check some reliable web sources, or get in touch with me!
The impairment of a person’s cognition impacts the brain’s ‘executive function’, and varies widely in severity. Often, the symptoms are exacerbated by fatigue. The symptoms include:
- Difficulty in thinking quickly, including word finding
- Loss of ability to multitask
- Difficulty with planning, organising and problem solving
- Shortened attention span
- Short term memory loss
- Affected visuospatial function
An early sign of PD that quite a few people experience is the onset of REM sleep disturbance. The impact can be severe, with people violently lashing out and vocalising in their sleep. People may also experience symptoms such as insomnia and excessive daytime sleepiness. The days of getting seven or eight hours of good sleep are long gone.
Depression and anxiety
Often experienced after a person is diagnosed, these symptoms are part of the disease as the body chemistry changes. Depression is an early indicator of the disease and can increase after the diagnosis news.
Chuck in stress and panic attacks on top of depression and anxiety for a miserable cocktail of emotional difficulties. The body uses dopamine to make adrenaline, which is a key chemical used to cope with physical and mental stress.
Dopamine controls everything, including a person’s motivation. Basic tasks like doing the washing may be difficult to start and complete. Apathy has a wide range of impacts. It may lead to reduced physical activity, which can worsen already impaired mobility. Apathy can also lead to reduced social interaction, which in turn can lead to depression. And apathy can put a significant strain on personal relationships.
Below is a collection of the odd or unusual symptoms, some of which may come as a surprise. Several of these symptoms are related to the loss of muscle control:
- Loss of smell
- Orthostatic hypotension
- Excess saliva production
- Hyperhidrosis (excessive sweating)
- Speech difficulties
- Swallowing difficulties
- Urinary urgency
- Sexual dysfunction
Loss of smell is a common but generally unnoticed symptom that can occur many years before any other symptoms arise. But, of course, loss of smell does not mean a person will get PD [if you have loss of smell, see your doctor].
Impact of medications
The following side effects can arise through the use of certain medications developed to help control PD symptoms:
- Impulse control disorder
- Delusional behaviour
That’s a long, complex list of symptoms, many of which are just not obvious to the casual observer. I hope you now have a better understanding of PD, noting that it is a complex condition with multiple symptoms, that those symptoms may be present for some and not others, and that they vary in intensity. So, when someone tells you they have PD, keep in mind that there might be a whole lot going on for that individual than you can’t see. Remember the ‘Parkinson’s iceberg’!
Further quality information on PD can be found at the Parkinson’s Victoria website, and the Shake It Up Australia Foundation website. And while you’re there at Shake It Up, please make a donation (tax deductible). Note that 100 percent of your donation goes to internationally coordinated research.
Thanks for reading.
Originally published at http://eclecticantics.com on April 11, 2021.