About Parkinson's
Parkinson’s... so much information is out there. There is Google, Facebook, Instagram, YouTube, scientific articles, books, news articles, conferences, webinars and the list goes on.
Whilst most information is helpful, some of it can be quite hard to interpret. And even if you can interpret, the sheer volume of information can be overwhelming. How then are you to know what the best next steps for you really are? Information overload! Decision paralysis!
Let’s start with the very basics. What do they mean when they say Parkinson’s Disease or Parkinsonism? What do they think causes Parkinson’s? What can you do about it yourself to take back that control and live your life with Parkinson’s in a way that is important to you and your family?
What is Parkinson’s and Parkinsonism?
Parkinsonism is the word used to describe a particular group of symptoms: slowness of movement (bradykinesia), a tremor, stiffness (rigidity) and sometimes changes in walking pattern and balance.
Parkinsonism is a feature of several related conditions, of which Parkinson’s Disease (which we refer to as Parkinson’s in our clinic) is the most common – up to 85% in fact.
The other 15% are the less common conditions. They include Vascular Parkinson’s, Drug induced Parkinson’s, Multiple Systems Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Normal pressure hydrocephalus (NPH), Cortico Basal Syndrome (CBS), and Dementia with Lewy Bodies (DLB).
In Parkinson’s, other symptoms can also be present, but vary between people.
Most websites on Parkinson’s will provide a seemingly never-ending list of symptoms, drawn from perhaps millions of people living with Parkinson’s. This list can be quite overwhelming to read. However, just because an exhaustive list of symptoms exists; this does not mean that you, yourself will get all these symptoms too. Parkinson’s is really different for everyone. What one person with Parkinson’s experiences, may never be experienced by you.
And we really do not know enough about Parkinson’s yet to explain why such difference in symptoms exist. One possible explanation lies in where Parkinson’s starts in the body.
We now know that Parkinson’s can either begin in the brain (brain first), or in the gut (body first) (1). They seem to think that ‘body first’ starts with earlier symptoms of sleep disturbances and autonomic symptoms such as constipation, dizziness on standing up, frequent overnight visits to urinate, even prior to the appearance of Parkinson’s and subsequent diagnosis. With the ‘brain first’, the symptoms before diagnosis can be a bit more silent.
After diagnosis, Parkinson’s of people with ‘brain first’ tends to be more on one side, where the ‘body first’ tends to be a little bit more symmetrical. They think the distribution is about 50/50. However, there are still people who do not completely fit that theory. This again reminds us that we still have lots to learn about Parkinson’s.
What we do know, though, is that in general, Parkinson’s is still falsely associated with older age - probably because of the archaic pictures that are still circulating in books and on the internet. However, Parkinson’s is not a condition which only affects older people.
Yes, the risk increases with age, however, up to 10% of people develop Parkinson’s in their forties or younger (2). The average age of diagnosis is, depending on which studies you read, between 55 and 65 years old.
This means that a lot of people with Parkinson’s still have or are building a career, have families with children to look after, or maybe be even planning a family. And some of them have just started to make exciting plans for early retirement. And every one of them, will experience Parkinson’s differently.
Which brings us to the next topic, what do we think causes Parkinson’s?
What causes it?
Based on research done over many years and from a wide range of sources, Ray Dorsey and Bastiaan Bloem published a position paper, in which they explained that Parkinson’s is predominantly an environmental disease (3). In this paper, they explained the three factors that they propose are mostly responsible for the sharp rise in people living with Parkinson’s. And these things are not the ones we often read about such as ageing/longevity, improved diagnosis or genetics. Instead, these main causes are: certain pesticides (MPTP, paraquat, rotenone, heptachlor, glyphosate), a solvent called Trichloroethylene (TCE which is used in paint removers, carpet cleaners and typewriter correction fluid), and air pollution (with hitchhiking heavy metals and fine particulate matter that can enter our body undisturbed).
Of course, there are other factors which play a role in the development of Parkinson’s; some of them have been conceptualised in a model of triggers, facilitators and aggravators (4). Environmental factors are an example of these triggers. Other triggers described in this model are head trauma, bacterial and viral infections and compromised gut health which is often referred to as your gut microbiome.
Facilitators are things that further contribute to the development of Parkinson’s once the triggers are ‘triggered. Examples of these are higher levels of inflammation in your body, problems with your mitochondria, which is a tiny structure in a cell that produces energy for that cell, a ‘leaky gut’, and of course our genetic makeup. Once you have Parkinson’s, then there are things that can make it worse, the aggravators. Examples of aggravators are excess free radicals, increased neuro inflammation, reduced capacity of the body to clean up cells that don’t work properly, general ageing and the aggregation of a particular protein in your body called alpha- synuclein.
All these things seem to play a part in who develops Parkinson’s, at what age, and who doesn’t.What we can conclude, is that although we are learning more and more about Parkinson’s and its origins with each study, managing Parkinson’s is not as straightforward as we would like it to be. We need to keep an open mind as to future directions, research studies and management. Which brings us to the next point: if we still don’t understand Parkinson’s fully, what can you do about it yourself?
What can you do about it yourself?
With all the symptoms so variable between people and no one the same, what are the next steps? How do you know how fast or how slow your Parkinson’s will develop? And can you make a difference yourself? Over the years, there has been a lot of research aimed at finding ways to slow down Parkinson’s. And while there is still a hesitancy in being officially able to say that we can slow down the rate of Parkinson’s progression, a number of potential modifiable variables have emerged. Unsurprisingly, these are all lifestyle factors. Maybe these lifestyle factors are the first pieces of a puzzle, a puzzle for which we don’t know how many pieces exist. Living well with Parkinson’s has once been compared to being an elite athlete (5); you need to get everything right to perform at your best; your sleep, your bowels, your diet, your exercise, your stress levels etc. So read on for an overview of the lifestyle variables that we know can make a difference in how you experience Parkinson’s.
Exercise
The most researched factor over the past 20 years, is exercise. Exercise, exercise, and exercise. There are well over 2000 studies on exercise and Parkinson’s that show that exercise is beneficial. We know that high intensity exercise is relevant (where you get your breathing up or your heart rate around 80% of your maximal capacity), but also the amount of exercise that you do in a week. We also know that being active in daily life has a positive effect on the symptoms of Parkinson’s. And of course, working on the things that are starting to become harder because of Parkinson’s, is going to benefit you too -balance, walking, running, playing the piano, ping pong, tennis, rolling in bed, getting up from the ground or a chair etc, you name it. Anything that you are not able to do as well as you used to, is something you need to work on.
Diet
The other lifestyle factor that has seen a spike in interest in Parkinson’s research, is the role of diet. Fresh fruit and vegetables, fish, legumes, small amounts of meat and plenty of olive and coconut oil seem to take a central role. Both the Mediterranean diet and the MIND diet have shown fewer reported symptoms over time (6).
Sleep
We know sleep is important too. For some people, sleep can be affected. Some people find it difficult to fall asleep, or stay awake during the day, and others find they can fall asleep, but wake frequently through the night. We now have interesting research that looks at targeting sleep and the circadian rhythm to improve symptoms and perhaps even modify the progression of Parkinson’s (7).
Social Health
Social health is equally important but one that we seem to forget about often. Indu Subramanian (8) and Laurie Mischley (9) have done interesting research on loneliness within Parkinson’s. They found that social isolation actually has a negative effect on health and was a risk factor for worsened health outcomes. In Dr Mischley’s Modifiable variables PD study (9), it was also found that good social health within a Parkinson’s setting, predicts a good quality of life. Even more than having a tremor; even though a lot of people feel tremor is stigmatising. And in this same study, the impact of loneliness was big. It basically undid all the good effects that you get from exercising. So, if you feel lonely often, then regard this as an important sign to get out there and get involved in your community; because as it stands now, you can’t exercise your way out of loneliness.
Stress
Both acute and chronic stress can have an effect on Parkinson’s. Acute stress may worsen motor symptoms and chronic stress increases the risk of depression and anxiety. Chronic stress may even accelerate Parkinson’s progression; this was seen in an animal based study(10). In a survey amongst 5000 people living with Parkinson’s(11), it was found that people with Parkinson’s can perceive high levels of stress; higher than someone without Parkinson’s. They found that stress worsened all studied symptoms: tremor, sleeping problems, depressed mood, bradykinesia, dyskinesia (involuntary movements), walking and freezing. Other symptoms that were negatively affected by stress were memory, focus, confusion, decision making, speech, pain and emotional symptoms such as anger, frustration, anxiety, nervousness and apathy. Situations with conflicts, time pressure, social stress and concentration also worsened symptoms. In stark contrast, situations where people were enjoying something, actually improved symptoms of Parkinson’s according to this survey. Besides being in enjoyable situations, various other strategies exist to reduce stress and with this it’s symptoms. Some examples are relaxation techniques -mindfulness, breathing, yoga and tai chi, progressive muscle relaxation, regular exercise, lifestyle changes – improving sleep, healthy diet, limiting caffeine, nicotine and alcohol- increasing your social support network and cognitive techniques such as practicing gratitude, reframing negative thoughts etc.
Supplements
What about supplements then? We know that Parkinson’s is characterised by increased inflammation in our bodies, more free radicals and a reduced functioning of the mitochondria (the energy producing bodies in our cells). Should we start supplementation then with so called ‘nutraceuticals’ to help the above? There seems to be a rationale for it, but unfortunately, we do not yet have evidence from good quality studies to be able to recommend any of them. The only supplements we are more certain about are Vitamin D (12), probiotics for some gastro intestinal issues like constipation, although we are still not sure which strains are best (13), some vitamins B’s to offset the byproducts from levodopa metabolism(14) with higher doses of levodopa, and melatonin for certain sleep issues. This does not mean that you should never add supplements if you wish to do so; it is just that we simply can’t recommend any at this stage because of lack of good quality studies. Dr Laurie Mischley explains this topic well in her education series via the very worthwhile Parkinson-School.com.
Medication for Parkinson’s
And what about prescribed dopaminergic medication such as levodopa (such as Madopar, Kinson or Sinemet) and the dopamine-agonists (eg pramipexole or ropinirole)?
These dopaminergic medications are most effective at improving what we call motor symptoms, eg walking, stiffness, speed of movement, facial expression etc. However, for some people they also help with mood, fatigue and anxiety. What they cannot do though, is change the progression of Parkinson’s. However, their effect can be more than just the addition of levadopa.
In general, dopaminergic medications help you move better.
The better you can move, the more effectively you can exercise and the more benefits you get from an exercise session, which will benefit you in the long run.
And other medications which help you to manage mood or your sleep, can have a similar indirect contribution to your Parkinson’s. The better your mental health, the more inclined you may be to get out, exercise, eat well and/or work on your social health. Feeling reenergised after a night of good sleep, can be of similar benefit.
What we are saying here is, even though medication does nothing to slow down Parkinson’s progression, it may amplify some of the effects of the above mentioned lifestyle factors. This way, it may actually contribute to you being able to manage Parkinson's better. This might be something for you to consider when you decide on yes/no taking dopaminergic medication for PD.
References
(1) Brain-first vs Body-first Parkinson’s Disease: an update on recent evidence; Horsager and Borghammer, Parkinsonism and Related Disorders, March 2024
(²) Ending Parkinson’s Disease; a prescription for action, Ray Dorsey, Todd Sherer, Michael S Okun, Bastiaan Bloem, first edition March 2020
(³) Parkinson’s Disease is predominantly an environmental disease, Journal of Parkinson’s Disease, vol 14, no 3 pp451-465 2024
(⁴)Triggers, Facilitators and Aggravators: redefining Parkinson’s Disease pathogenesis; Johnson, Stecher, Labrie, Brundin et al, Trends neuroscience Jan 2019.
(⁵) No Silver Bullet for PD Series, what type of exercise is best for people with PD, Bas Bloem on www.nosilverbullet4PD.com
(⁶) Comparison of associations between MIND and Mediterranean Diet Scores with Patient Reported outcomes in Parkinson’s Disease; Fox, Jaehwa Park, Mischley, Nutrients Dec 2022
(⁷) Targeting sleep and circadian rhythm as a novel treatment strategy for Parkinson’s Disease; Feigl, Lewis & Rawashdeh, Journal of Neurology, Nov 2023
(⁸) Social Prescribing in Parkinson’s Disease; Indu Subramanian, Moving along 2022, Volume 26, Issue 4, Dec 2022
(⁹) Modifyable Variables in Parkinsonism study, Dr Laurie Mischley
(¹⁰) Stress exacerbates experimental Parkinson’s Disease; Hemmerle, Dickerson, Seroogy. Mol Psychiatry 2014
(¹¹) Stress and mindfulness in Parkinson’s disease – a survey in 5000 patients; Van der Heide, Speckens, Meinders, Rosenthal, Bloem,1 and Helmich. NPJ Parkinson’s Disease Jan 2021
(¹²) Understanding the role of ‘sunshine vitamin D’ in Parkinson’s Disease: a review; Behl, Arora, Singla, Sehgal, Makeen, Albratty, Meraya, Najmi, Bungau. Frontiers in Pharmacology Dec 2022
(¹³) Probiotics and Parkinson’s Disease, Dr Gilbert, American Parkinson Disease Association, Oct 2022.
(¹⁴) Dietary approaches to improve efficacy and control side effects of Levadopa Therapy in Parkinson’s Disease
(¹⁵) a systematic review, Keun, Arnoldussen, Vriend, van de Rest, Advances in nutrition, Nov 2021
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