Racing Toward a Miracle

Racing Toward a Miracle
I look for a lost piece of paper in my messy den,
Happen across an envelope of pictures,
A hiking trip to Banff five years previous,
Rush downstairs to reminisce with my wife, Mary Ellen –
– A treacherous hike along a rocky streambed,
– Clicking rocks noisily together, avoid surprising a grizzly bear,
– Climb along a steep canyon wall, a rushing waterfall at the top,
– Her picture with a surprising little chipmunk,
– Met halfway up, feeding it peanuts,
– The two of us standing side by side, Banff far below us,
– Taken by a friendly European couple on another trail,
– And, lounging on a log, a gorgeous blue-green lake backdrop.
I relive details, now become foggy in her mind,
Still we share a pleasant hour, reliving those days.

A poem, by Dante, sums up what’s happened:
“Midway upon the journey of life,
I found myself within a forest dark,
For the straightforward path had been lost”.

Our planned future together has drastically changed,
We used to talk and laugh about passing into the eighties,
When we’d be sitting side-by-side in our rockers — but,
After 56 years together, she now has Parkinson’s Disease (PD),
And, closely related, Lewy Body Dementia (LBD).
Three years ago tremors began in her right hand,
Additional symptoms soon disrupted her everyday tasks:
– Paying and balancing the checkbook
– Cooking with well-practiced recipes
– Difficulty driving and navigating
– Conversational skills gone
– Her bouncy, smiling personality disappeared
A University of Michigan specialist prescribes,
Helpful Sinemet pills plus Aricept,
Advises daily exercise, physical and mental,
To slowdown any future declines.

I recall a now poignant song from the fifties:
“Those were the days my friend,
We thought they’d never end,
We’d sing and dance forever and a day —-“

Our active lifestyles, now forever left behind?
Travels, outdoor activities and socializing with friends –
Vigorous tennis games,
– Club Med, Captiva Island, Kauai,
– Australia’s Barrier Reef, Palm Springs —-
Challenging hikes —
– Mount Manadnock, top of the Breckenridge chairlift, Canada’s Banff,
– Summer Vail, Sedona red rocks, New Mexico mushroom hunting —-
Downhill skiing —
– Alpine Valley, Snowmass, Vail, Steamboat, and Tahoe,
– Winter Park, Jackson Hole, Whistler/Blackcomb —-
Collecting her 200 plus magnets from our travels,
And much, much more.

Beatle’s lyrics express it so well —
“Yesterday, all my troubles seemed so far away,
Now it looks as though they’re here to stay,
Oh, I believe in yesterday”.

Our yesterdays were calendar driven,
Targeting the above experiences,
Now, driven by health considerations,
We plot new directions in our lives,
Emphasize fighting to maintain her capabilities,
New kinds of physical exercises —
– Water aerobics
– Group stretch and strength hours
– Yoga trials
– Dumb-bell workouts
– Bicycling, now peddling a tandem
We add a mental exercise program —
– Learning poetry
– Reading passages out loud
– Spelling words frontwards and backwards
– Gin rummy and puzzles
Private moments of fun, despite her limitations —
– Casual walks in the sun
– Laughing about our poetry mistakes
– My struggles at replacing her cooking skills
– Visits with our four kids and 14 grandkids
I choke up several times a day,
Seeing her as she is; and how she used to be,
Thankful for what we still have.

I hold onto the hope of an anonymous piece of prose –
“Hope is a dream, one that never ends,
Hope is a friend, one never leaves,
Hope is love, sweet and fragile,
Hope is a door that never closes,
Hope is you and me, what we want our life to be”.

I begin a hopeful Internet search for a medical miracle,
Learn more about Parkinson’s disease –
Basic research now finds two separate Parkinson networks,
One for movement, one for cognition,
With similarities in Parkinson’s with dementia (PDD),
Alzeimer’s (AD) and Lewy Body Demntia (LBD),
All sharing problems with amyloid plaques in the brain;
A cancer drug reverses those amyloid plaques in mice,
A first trial with humans about to begin;
A synthetic version of curry spice also effective on mice,
More human trials yet to begin;
A new drug improves blood flow in stroke victims,
May halt the progression of brain plaques,
Human trials two to three years away;
New gene therapy, injected directly into the brain,
Bypasses the blood-brain barrier, mild initial improvements;
Eli Lilly/Medtronic combine to deliver a chemical,
Directly into the brain; potential use years away;
Medtronic’s markets a “brain pacemaker”,
Wired into the brain, eliminates hand tremors;
Photostimulation, a future better approach –
How soon might such miracle solutions appear?

Patti Davis has written a book about her dad,
Ronald Reagan, and his long bout with Alzheimer’s,
Titled “The Long Goodbye”, referencing a Dylan Thomas poem:
“Do not go Gentle into that good night,
Old age should burn and rage at close of day,
Rage, rage against the dying of the light.”

We, like millions of others, join a race — one of worry versus hope,
I worry about a future of gradually deteriorating symptoms:
– Increasing stiffness; a shuffling walk
– Worsening tremors
– Symptoms spreading to both sides of her body
– Difficulties eating and swallowing
– Medications losing effectiveness
– Her mind gradually deteriorating
– Till she forgets who I am
Remaining positive, I also hope for a timely medical breakthrough –
– A pill that attacks those nasty tangles in her brain
– Her neurons magically restored
– Much of her memory returns
– She regains bubbling personality
– We laugh that “she’s just been away for a while”
– We move ahead, resuming old activities
This powerful, important race regarding her health,
The winning decision – years of waiting ahead.

I listen to Time in a Bottle by Jim Croce,
Which so well captures my feelings for her –
“If I had a box just for wishes,
And dreams that had never come true,
The box would be empty,
Except for the memory,
Of how they were answered by you”.

Mary Ellen’s brother, Bud Moore, died after 12 years with PD,
My heart goes out to other Central and Red River alums,
Patients with PD, LBD or AD, and their hopeful caregivers,
I look forward to a day when survivors of these diseases,
Celebrate their recoveries, like cancer survivors –
Mary Ellen among them.

Jim Haugen

Jim Haugen

Jul 10, 2012