My friend Karen Scott suggested I write more about what Parkinson's Disease is like "on the inside". At the same time, I was researching the different senses of the human body, and the problems which can occur with these in PD. In this article, I attempt to to tie these two threads together.
The Senses of the Human Body
Our full range of senses actually extends far beyond the standard five we were taught about at school, and include:
- Exteroception - sense of the state of the outside world (vision, hearing, smell, touch, taste, external temperature);
- Interoception - sense of the state of the internal organs (aches and pain, hunger, organ motion, internal temperature, etc);
- Proprioception - sense of movement and relative positions of the parts of the body;
- Equilibrioception - sense of balance under dynamic conditions;
- Nociception - sense of damage to nerves and tissue;
- Chronoception - sense of time;
- Neuroception - the nervous system's sense of whether situations or people are safe, dangerous, or life threatening.
It would seem to me, from standard lists of motor and non-motor symptoms, such as those provided in
that virtually all these different senses can, at times,be malfunctioning in people with PD. Smell, taste, touch, balance, motion, body temperature, carbon dioxide in blood (which determines breathing rates) are all standard issues with Parkinson's. Through being very mindful of the fuller spectrum of "senses", I am seeking to better internally diagnose exactly what has gone wrong in my body, in order to develop approaches for fixing myself. This kind of self-diagnostic is, of course, very hard when the senses themselves have been significantly diminished, but I am slowing but surely bringing them back online.
What's It Like to Stand Still with Parkinson's Disease?
I now feel in a better position to try to address Karen's suggestion. So I thought carefully about what it's like for me just standing on the spot when my symptoms are pronounced. I realized that it feels as is if another one of our more exotic senses - the sense of gravity - is also malfunctioning in my body. We know from the experience of astronauts that the body's sense of changes in gravity can result in major physiological alterations.
So, what it is like for me just standing still when my Parkinson's Disease symptoms are pronounced is exactly like standing in an increased gravity field! It feels as if a weight is crushing down, and the worse the symptoms, the more mt body seems to be feeling that crushing force. I feel like I am being inexorably pulled towards the floor: my knees buckle; head drops forward; arms hang heavy by the sides, and it is an incredible effort to lift my feet off the floor. If you've ever been on a fairground ride which exerts centrifugal force on your body, then you will have experienced similar feelings. As an aside, such fairground rides always did make me very ill. Looking back now, I do not believe this was co-incidental.
When my symptoms are really bad, it is difficult to stand for long under this malfunctioned sense of gravity, which I now do believe has also gone haywire, just like so many other senses do in PD, and virtually the only thing I can do is lie down. But, even then, breathing is hard and it is difficult to inflate my stomach or chest: my body is then concave, with the stomach in collapse, just as if a great weight is still bearing down, pushing me down into the bed.
When I first shared these thoughts, a number of friends with PD agreed or gave their own similar analogies:
- "I have always said that it feels heavy, like I have cement mixing in my body."
- "A feeling of heaviness is definitely a big thing for me. Love the cement mixer analogy. Another term that's useful is density. Not just carrying or lifting a weight, but more like every cell in my body has its weight doubled by its cavities being filled with cement rather than water"
- "I always tell people I feel like gravity changed and I'm dragging myself through sand now."
- "I also feel a constant tension of my body trying to resist that weight."
An Explanation Why it Feels Like This
It is useful to consider the Fajardo Method of Biomechanics to help us understand what's going on inside the body in terms of internal pressures (water, blood, air, oxygen, etc). In particular, this framework for understanding teaches us about the physiological changes in the pressures throughout the body, and the outcomes of these changes, under different degrees/types of stress. Indeed, I wrote an article based on this myself and noted the very direct correlations with these physiological changes and the advancing symptoms of PD:
These changes in internal pressure under stress would also explain the feelings of heaviness/being crushed expressed above, since if the internal pressure forces in the body aren't sufficient to overcome the external force of gravity, it would stand to reason that the body would start to adopt concave shapes, like the classic stooped posture of PD. This is easy to understand with a simple analogy of a balloon. If we pump up the balloon to a high pressure, the balloon would be perfectly round. However, if we then started to deflate it again, decreasing its internal pressure, then the sphere would begin to collapse under gravity: the balloon becomes more rugby ball or american football shaped. This is because the internal pressure pushing outwards is no longer sufficient to completely overcome the external force of gravity. As we keep deflating the balloon (analogous to making the Parkinson's symptoms worse), the balloon will continue to flatten out on. Indeed, eventually it will be just be a flat pancake of rubber on the floor, of course.
Just as anyone can intuitively understand what we mean by the "heaviness" of PD by going on a fairground ride which spin in some way to create a strong centrifugal force on the body, conversely, perhaps a way for people with PD to intuitively remember what a healthy body should feel like could be through buoyancy (underwater diving) or zero-g experiences like skydiving. I would therefore be interested to hear from anyone with PD who has had such experiences while symptomatic. How different did your body feel? What was the therapeutic value?
In summary, it would therefore seem to me that very many "senses" have gone haywire in PD, beyond those which we normally consider, including many of the less familiar senses which come under extero-, intero-, proprio- and neuro-ception. Since most of us have never been taught about these, we don't even have the language to even begin internally diagnosing our own health. Nevertheless, by learning about our fuller spectrum of human senses, this will help us to understand what is actually happening in a person with PD's body - and hence begin to able to answer Karen's question "What's it like?" it more beneficial ways.