MdDS a chronicle of an invisible neurological balance disorder

Empathy & raising awareness

Pease no pity


Try living with & attempting to

Walk with severely altered balance,

Sensations of constant rocking, bobbing, swaying, tumbling,

Balance affected

Disequilibrium, & unsteadiness,

as if walking on a suspension bridge, water bed, trampoline


a stormy ship in high seas.

Moving floor sensation earthquake beneath ones feet

severe & noticeable while walking, standing, sitting.


Associated considerable fatigue.

Life altering

Require support for walking, standing, holding on to walls.

Clumsily handling objects – dropping things


G forces gravitational pulling downwardly at my bodily being

Brain fog lingering


Unceasing internal movement sensations as I read



My new normal



Thus began my eight year journey with MdDS

Neurological testing, CAT scanning, ENT & VNG testing

Ruling - rare disease finding

Less than 20,000 victims world wide


Life altering

Car driving untenable


Currently 78 years of age

Still ticking


Eight years with an invisible neurological balance disorder complicating my life.

Pain & imbalance

Accompanying my ever movement.

Walker, wheelchair, impoverished movement

All constant, unrelenting & goading companions.


Yet I find joy in my most important realities,

My children, grandchildren, great grandchildren, family, journaling,

my memoir sharing group, audio-book reading, computing, viewing

Photo scanning for my family’s visual memoir,


I pursue multitudes of other delightful endeavors. 


You see I press on

with this inwardly twisted tangled body trailing relentlessly on. 


This is the path I am on

This is the road I must travel to get to the place I must go.

Life is still precious

Even when partnered with unwelcomed companions.


This Is Me - This Is My Life



This is the road I choose to travel to arrive

at the place where I must go.