Clothing and The Freeze Phenomena in Parkinson's Disease

For People with Parkinson's, there is something very strange about the feedback between our brains/bodies and our immediate environment. The choice of clothes, in particular, can affect symptoms. In this article, I cover why consideration to clothing is an important part of living well with Parkinson's.

We people with Parkinson's Disease (PwP) have an unusual sense of our nearby environment, and also may be hyper-sensitized to anything touching us. In essence, both our exteroception and proprioception can get "fritzed" in some way.

For example, many PwP, especially as the disease progresses, will experience feet getting stuck to the floor - just as if we had superglue on our soles! Our brain is telling us we will fall - and simply doesn't let us move.  Sometimes, due to the balance issues, we may actually often begin to topple over, and automatically reach out hands to the nearest surface, in order to catch ourselves from falling. But then, in the resulting half-toppled position, our hands also may become "superglued" onto the surfaces. Again, brains won't let us move because it senses we will continue to fall over. This can be terrifying, because now both hands and feet are well and truly stuck! And the terror feeds a very vicious circle...

Indeed, most people have heard of "flight or fight" mechanisms - the natural responses to external stress stimuli or perceived threat. There is actually also a third response, called "freeze". It is our experience that PwP begin to develop the condition as a habitual response to environmental factors or stressors which we have no control over. Our whole system starts to inhabit this "freeze" mode in a negative feedback cycle. We begin to enter freeze states on a hair trigger in response to our stressors. And we can end up permanently frozen, unless this vicious circle is broken. Our work on Out-Thinking Parkinson's is actually largely about interrupting the habitual patterns of "freeze".

As a definite, physically manifest example, I would like to present a real problem, and how by "Out-Thinking", we have arrived at solutions. Many PwP also get stuck in doorways. Importantly, in this case, it is even without touching anything that we still freeze. It seems our minds are acutely aware of the doorway and we just, simply... stop. We stand in that doorway like a statue, frozen in place. Why? I believe it could be due to some sense of fear of walking into a room. Perhaps it is because we cannot see what's inside from the doorway, and this triggers our brains into a defence mode, triggering the "freeze" stress response.

In this video, you will see how I've turned doorways around into an advantage in living with Parkinson's myself:

However, if I lie on a sofa when my Parkinson's symptoms are pronounced then, if my arm touches both my body and the upright back, that arm becomes immobile, trapped. If I sit in a chair with armrests, backrest and headrest,  it is as if someone had superglued me into the chair!

The very same responses can come into play with the choice of clothes that people with Parkinson's wear! These choices can make or break whether we can operate functionally through the day. Tight clothes, heavy clothes, coarse fabric clothes, overly warm clothes, restrictive clothes can really do strange things to us. These aggravate or trigger that freeze response.

If you follow my video diary entries through from January 2016, you will see how my own choice of clothing evolves with my understanding. I now wear loose, light clothes made of cooling fabrics. This has made a tremendous difference to my quality of life.

But not to my appearance, nor "feel good"  factor when out-and-about.

There are tens of millions of people worldwide who are diagnosed with Parkinson's, and very many thousands of newly diagnosed PwP each year. Most will not have come to the self-realizations we now have about how impactful the choice of clothing has. However, this means small changes will have immediate experiential benefits for PwP. A well designed brand or collection of clothes aimed specifically at providing solutions would make a massive difference to our Quality of Life.

We are therefore highly interested and passionate about highlighting to designers and manufactures the need to come up with the optimal solutions for clothes designed specifically with PwP in mind. This includes the all important "look" and "self-confidence" factors alongside that of functionality, something which is currently sorely missing from the market.

I, for one, would love to look good again, while being as free as possible from symptoms. Indeed, walking proud and standing upright is also actually massively beneficial in itself. Self-confidence is not to be under-estimate either in its impact on symptoms. Similarly, we would be highly supportive and willing to self-test or trial clothing lines which may be well suited to meeting these needs too.