Chapter 88 - A Moment of Enlightenment

This morning I experienced a revelation. This morning so many pieces fell into place. This morning I realised how she may feel in motion, in contact, in collision, in orientation. All those quirky sensations; going too fast, things not level, surfaces sloping, objects too close, spaces too cluttered, spaces too confined. In almost 16 years I have never looked at all the pieces as a whole. Until this morning.

Her reticence to make use of her scooter in the manner she dreamed before we bought it has been bothering me; why won't she use it? why won't she take it onto our village bus twice a week for shopping trips? why does she still want to supermarket shop (if at all) during off-peak hours? why won't she drive the thing into shops? around the malls? along the strip shopping of our main street? Where is the Independence that she dreamed of?

This morning, prompted by all the clues above I searched on "spatial disorientation parkinson" and received the small number of 27,200 hits. In the first ten some academic waffle, then "Resources - The shopping experience: Is it really fun?" at

http://www.brisinst.org.au/resources/brisbane_institute_adkins_smith_shop.html

Please read it when you have time. Although the article speaks about the negative aspects of supermarket design I can identify that it describes how she must react to motion, congestion, moving objects, dimensions in all circumstances.

I have treated her problems as whims, new experience discomforts, shyness, eccentricities and any other reaction to be expected from a "normal" person. Do the people in suits who prescribe pills understand these things? If so I wish we had been advised; perhaps we were, yet not understood.

We know that stress aggravates her PD symptoms. She is stressed by the following situations that readily come to mind; roundabouts, my driving too close to other vehicles, confined within cars allowing her no leg room, her bed must seem to be level, her bed must be square to the wall, bed clothes which have slipped off the bed onto the floor must be picked up for her to walk, people & objects approaching quickly, walking through narrow aisles in shops, entering clothes shops over-filled with display racks, confined toilet rooms in motels & many homes, overly large toilet rooms lacking suitable grab rails, stairs & steps, unfamiliar homes, frail chairs, chairs without arms, deep soft lounges, congested restaurants, irregular walking surfaces, some patterned tile floors.

Today we attended our local PD Support Group at which people from the big city up north spoke about PD symptoms & issues. Mainly for the benefit of recent diagnosees. All others in the room had been diagnosed in the last 5 years. As someone said "Does he want us all to become hypochondriacs?" I think that's humorous in a gathering of Parkies & their carers! She was diagnosed in 1991 (perhaps 1990?). I feel we know enough about symptoms, yet do we really? We do need to know how to deal with them.

I think I'll suggest a walk around our village.