#MdDS #ACRONICLE

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

or

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

~

Adjusting

My new normal

Thankful

~

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

Again

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

Thankfully

~

This is the road I choose to travel to arrive

at the place where I must go.

-Mary