Tuesday, October 25, 2011

The Ticking Meter

My head feels like an old depot,
Worn by time and tears,
No more locomotives passing through,
Café filled with tales and baggage,
The old depot’s barren now,
There has been a great brain robbery.

“One cool spring day in 1971, the kind that makes New Englander’s smile at each other, I was driving with my husband down the main street of a small coastal town south of Boston.  I spotted a parking space in front of our destination, a café where we dined frequently, sharing chowder, fried clams, giant iced teas, and dreams of the future.
              I told my husband, ‘Look there’s a parking space.  Not only that – there’s money in the meter.’
              ‘I’m glad’,  he murmured, seeking my eyes through his sunglasses.   ‘But I think my meter is running out.’
              His metaphor fell on deaf ears.”

- From the first page of the opening chapter of “Learning to Speak Alzheimers” by Joanne Koenig Coste
And so begins an important book for both early AD sufferers and more importantly, for their caregivers.
It contains many useful checklists that explain the progression of AD and the behavioral changes associated with each stage... a checklist to know when to stop driving for example... and many other useful tips.   Most important, it discusses  "Habilitation"  a new approach for caregivers in understanding and dealing with the frustrations that AD sufferers undergo.

- I must remember to give it to Mindy to read...  it's a good thing she reads my blog entries, in case I "forget" ... ha ha ha...


On another level,  the metaphor  Ms. Coste's husband unintentionally spoke does create a realization of time ticking away.   One good thing from the book was Ms. Coste's statement which reinforced what my neurologist, Dr. Flitman, had said... and that was that the progression of the disease can take 3-10 years to progress from one stage to the next.

The problem is ... every person is different, and none of us really know how much "reality" time is left on our individual "meters"  do we?

I remain hopeful that the new drugs I am taking to slow the disease's progression will be like dimes to buy me a little more time in the real world.    But I also remain hopeful that, in the real time I have left, that AD research will turn up some quarters to turn the meter back a bit for all of us...

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