The trial drug is working and my life is before me

TauRx trial -- ain't nothing but the real thing, baby

I am not on a placebo. I am on the real LMTM, because so much is more clear. I still can't do math above 20, still can't read music, still can't multi-task, still get confused, still can't find common words -- but I have an absolute solid sense that WE ARE ONTO SOMETHING HERE!

I know I am not on the placebo because the clarity with which I see/perceive has changed radically in the last six weeks -- as if running the windshield wipers and realizing how dirty the windshield was.

For the first time in 3+ years since the diagnosis, I have not just hope, but a deep inner sense that the rest of my life is before me.

Tau. Wow.

Thank you, God, how can I help?

Yes!!!! I am scheduled to begin the Phase 3 trial of LMTM next week. I'll be on a placebo or the real drug for 18 months, followed be an offer for the real drug. If my hunch about tau (St Francis??) is right....wow....Thank you God, how can I help!

Latest news

Time to get off the river of denial (again) and admit that life is more difficult. The last 4-5 months I have had more moments of complete confusion merging on panic at times, but so far, I can pause when agitated, breathe deeply, slow down, and get myself oriented. But it does mean I need to continue to slow WAAAY down. I also bought a labeling machine, which I will set aside a day to learn how to use and get on it.

I have to be very careful about tidying up. I've never been a neat freak, nor have I been a slob, but my ability to live in a state of 'messiness-light' -- those days are gone. I need clarity, structure, lists, labels -- so I need to find and nurture my inner neat freak (if she exists!)

I'm now on 20 mg Donepezil (generic Aricept) and after a couple of miss-starts, have titrated up slooowwwly to 20 mg Namenda -- both 10mg, twice daily.

Turns out my sense that chewing nicotine gum helps is true according to a recent study, and I'll check with Dr. Starkey re the nasal insulin, as I suspect glucose is an issue.

The latest report from NIH -- reasearch is ridiculously slow (IMHO), but promising

2011-2012 Alzheimer's Disease Progress Report

Groceries and thinking outside the box

Last Tuesday, I bought four bags of groceries and put them in the trunk of my car. The next day, I recall looking in the refrigerator, noticed missing items, felt something was 'not quite right' -- no recollection of the groceries in my trunk. Thursday I noticed my car smelled really strange -- again, no recollection of the groceries in my trunk. Then suddenly Thursday night, an image of me picking up a carton of a dozen organic eggs at Raley's flashes into my mind, and I remember the groceries (which had to be thrown out). It's as if the brian cells responsible for remembering groceries in trunk knew they were dying, sent out SOS signals which were picked up by other brain cells -- "OK, give us a few days to learn the program, but we got you covered!" The good news: My brain can still adapt and I can still create some new reminder notes to put on my dashboard.

Yesterday, my friend Kika gave me a nightlight she had picked up for me in Hawaii. After taking it out and admiring it, while Kika was in the kitchen getting some tea, I put the nightlight back into its purple container (success), then put the purple container into the white box (wrong), and then tried jamming the white box into the brown box on the left (should be the other way around). I kept struggling with it and could NOT figure out what was wrong. Kika returned and I asked her for help and was shocked when she easily put it all back together. The good news: Today, I don't have any problem with this; friends will  help if I ask them; and I have a whole new perspective on 'thinking outside the box.'

President Sarkozy speaks at AAIC (with English translation)

Disappearing acts

Today I discovered:

• I had filed the latest Grapevine in my tax return folder (whaaaaa???),
• put my Blackberry away where I keep phone books (that kinda makes sense), 
• my gardening gloves ended up in the cupboard with the cat food, 
• some cheese ended up in the freezer...
• and I have NO idea where my Yoga DVDs disappeared to...

........BUT........

• I read the Grapevine, 
• the Blackberry is getting charged, 
• I fed the roses, 
• the cheese wasn't that great anyway, 
• I've signed up with a private Yoga teacher,

...and I had a good laugh
...and I was reminded once again that multitasking meganthemegan has left the planet.
Time to sloooooow down.

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.