Thank you, God -- how can I help some other way???? YAAARRRGGGHHH

I had volunteered for the Groundbreaking NIH-supported study expands, seeks new volunteers and felt really good about it. This project gave me a sense of meaning and purpose around the diagnosis. But the folks running it made a mistake.

Actually, they've made a number of mistakes along the way, but up until today, no big deals.


They did not tell me (confirmed by my sister, who has been with me at each appointment) that I was NOT to start any new medications during the initial part of the study. They did not tell me to wait JUST 30 DAYS (which I would have gladly done). Both my sister and I heard them say I must report any changes in medications, but not that I wasn't to change or start any. YAAAAARRGGGHHH!!!

My neurologist (whom I trust) started me on generic Aricept two weeks ago. He believes early, aggressive use of this and Namenda MAY (maybe maybe maybe) slow down the progression.

So I'm out of the study for now. I could begin the study again if I put off taking Namenda, and there's a chance I could start the study again later this year, but my son and I are going to Ireland to celebrate his birthday in October.

So here are the choices:

1. Following my doctor's recommended medication schedule (which may, or may not, slow down the AD progression) and standing in the soft Irish rain with my son celebrating his birthday. Perhaps writing an article "Traveling with Cognitive Impairment -- So What If You End Up On the Wrong Train -- Ireland Will Love You Anyway"
2. Not following my doctor's recommendations due to someone else mistake and participating in a study (for which I am only one of many volunteers) which may not even be relevant one year from now, considering other research that is underway.

...I'm going for what feels like more fun. And ask God to help me find another way to be helpful.

Roses and Julia Child help with technical difficulties.

Limitation is such a neutral word. I had to change the batteries in my car and home alarm fobs. The last time I did this, I probably had the TV on, was engaged in a conversation, with food cooking on the stove -- and I changed the batteries with no problem.

Not so the other day. I got completely lost. Spent 10 minutes trying to open one of the fobs, then realized it was already open. Put the wrong size battery in each fob. Mixed up the new with the dead batteries. Started to feel the tears coming on.

So I went out in the garden.
Had a talk with God, via roses (Julia Child yellow variety) that are still blooming.
Went to Walgreens and bought another set of batteries.
Came home, fixed some chai tea.
Thought about roses and Julia Child.
Took everything veeeerrrryyy slowly.

Both fobs now have new batteries.

I think it was the roses that did it.
Or maybe Julia Child.

St. Francis and Alzheimer's? Yes!

I have this sign on the inside of my front door to help me remember what I might need when I leave the house...and to remind me who is in charge.

The picture is from the labyrinth at the San Damiano Franciscan Retreat Center in Danville, so this sign also reminds me that as my brain becomes a labyrinth, in the center of the maze is always a loving God.










On the outside of my front door is a plaque I bought at the Basilica of St. Francis in Assisi, Italy. It reminds me and my friends "Peace and All Good", the Franciscan greeting.

This is the Tau cross of St. Francis. And here is God's paradox: "Tau" is also the name of a protein in the brain that, when defective, can result in Alzheimer's disease.

So I will wear my Tau cross to keep on the loving side of that paradox, and I bet it will work better than any medication I might end up taking.

..and this is the cherry tree in Assisi I rested under after a hike to the place where St. Francis and his followers went for retreat (and that day was the most beautiful day of my life, other than the day my son was born). I describe how Francis led me on that hike here:
St. Francis leads the way 

It's official...what the neurologist said

The bad news first:

After giving me some more cognitive tests (I drew a clock with time at 11:10 correctly except for the short/long hands -- I resisted the urge to go digital) and neurological tests (I can walk a heal-to-toe straight line -- another blessing of sobriety), the UC Davis Alzheimer's Disease Clinic neurologist stated that my Mild Cognitive Impairment (MCI) is the variety that is the precursor to Alzheimer's and that I may "need more assistance in the near future." The official lingo is Amnestic Multiple Domain MCI.

He recommended I drive only short distances to familiar places. He recommended I put a sign on my stove -- "Use the Timer" -- and use microwave meals whenever possible.

..now the good news:

I will be taking part in the groundbreaking Alzheimer’s Disease Neuroimaging Initiative (ADNI) which is so waaay cool -- not run by Big Pharma, and they will advise all the latest research.

More important -- I absolutely insist upon enjoying life..."we will see where our experience can benefit others" -- and as 1 out of 8 baby-boomers will be joining me on this road, I want to demonstrate how you can lose your mind AND have a good time doing it. WHY NOT?? I want to turn this around from the "long good-bye" to the "long hello to something COMPLETELY different"...where is Monty Python's giant foot when I need it?..oh...here it is:

In truth, my future will probably be a lot harder on my beloveds (if you're reading this, you are one of them) than on me. And I don't want to minimize that this is serious stuff...but no person, place, thing, or illness gets to define who I am, and I am (and will continue to be)

-- meganthemegan.

Spell 'World' Backwards

It took me two tries before I realized the pruning shears wouldn’t unlock the front door;
I panicked when I couldn’t remember my son’s name;
At first I laughed when I started the car and saw I was wearing pajamas and a sweatshirt;
And saying ‘bingo’ when my friends come up with a word I can’t remember is happening so often,
I should probably get over my aversion to the game.

So when the doctor asked me to spell ‘WORLD’ backwards,
I wanted to say “That should be easy given what I’ve been going through.”
But instead, I closed my eyes tight shut, saw the blackboard,
And spelled ‘WORLD’ backwards correctly.

And now I pray he will find something in the five vials of blood
That will give me some option other than coming to a time
When I will not know how to spell ‘WORLD’ backwards.

In the meantime, I learn to cope and
Printed out a sign I can read on my way out the front door:

“Where are you going?
Is God with you?
--Spell ‘WORLD’ backwards--”

(This was written 3 years ago when symptoms first appeared. More on the awful experience I had with doctors at that time BECAUSE I AM A WOMAN in some later blog when I feel like kvetching.)

Maria Shriver - A Woman's Nation Takes on Alzheimer's