Mie Maruyama
Japan Parkinson’s Disease Association

When people hear the term “Parkinson’s disease”, they probably have a strong impression that it is an illness from which elderly people suffer, but there are also rare cases in younger people like myself.

Symptoms such as tremors, muscle stiffness, and postural reflex impairment are often cited for Parkinson’s disease but, in fact, there are many more different symptoms. Moreover, the symptoms differ according to the individual, making it very difficult to comprehend, and the reality is that even those of us with the same disease sometimes find it hard to understand each other.

There is a symptom called “acceleration”. As the word suggests, the person breaks into a run and is unable to stop unless they crash into something. They may accelerate forwards or backwards. This symptom is particularly severe for me: every time I start running inside my house, I look for a place to crash, throw myself against it, change direction, and run again. I just repeat these movements over and over.

What acts as a brake for this acceleration is a single tension pole which stretches between the floor and the ceiling. Without this tension pole, my everyday life might have been spent in a series of collisions and falls. It plays a great role in the housewife’s most frequently trodden route, between the kitchen and the living room. When I come running with enormous momentum, I grab the tension pole with my hands, swing my body round 45 degrees, ram into the kitchen sink, and come to a stop. If you have severe acceleration symptoms, please try placing a pole at a key point along your regular route (Photo 1).

Photo 1:  This tension pole helps with “acceleration”

When my medicine runs out, my body stops moving, like a robot whose switch has been turned off. This symptom is called akinesia. Even if it does not go as far as akinesia, I can experience bradykinesia (slow movement), frozen gait or, at any rate, impaired movement of my body. At these times, listening to the click, click of a metronome as I walk ameliorates my symptoms. I set the speed to around 120 or a little faster. It is best to turn the volume up a little. I do not know the reason why, but when I experience this sound and speed with my body, its movements get slightly better (Photo 2).

Photo 2 : The metronome that I take everywhere with me. If I listen to its click, click sound as I walk, my symptoms are ameliorated

There are many things in everyday life which people with Parkinson’s disease become unable to do as their symptoms progress. For example, when they are riding on a train, the action of getting off the train becomes impossible; they cannot get out of a lift when the door opens; even if they want to get onto an escalator, they cannot take the first step; and so on. When I experience such symptoms, I erase that fact from my mind with a huge eraser so that it never happened. I make the decision to turn my train of thought to a positive direction which says that I can ride on escalators and in lifts.

We who have Parkinson’s disease use various types of care equipment in our daily lives. Nevertheless, I think that believing unreservedly in my own power and searching for methods to which my brain will respond is one of the pleasures as I live a day at a time.