Thursday, February 28, 2013

Her brain, my brain, our brains.

Peggy had been shouting out, alot.  Agitated?  Not really, just a big "Hiiiiiiiiirgh" out of nowhere.   And not just when moving or touching her.  "Hiiiiiirgghh" It would startle the heck out of you.  It reminded me of Tourettes Syndrome.  So, I mentioned this to her doctor.  Now she is on Haldol a drug used to treat Tourettes.  Of course we had to experiment with the dosage, but she is reacting really well, and not as agitated or vocal.  Here's the thing.  I don't know anything about Tourette's (like how to even spell it) or Alzheimer's, and if I can make a suggestion that works, don't you think we need a little more research about the whole damn disease.  I wish Peggy was in a lab, under a microscope in an MRI machine all day and night to see exactly what her brain is doing, how it is dying, how and what drugs do to her brain activity.  She wouldn't know, she would be the same, but the world wouldn't.  I've signed her up at USC, but she only goes once a year, and they just kind of look at her and take a few notes.  This year it was over the phone, because it is so difficult to move her.  We could learn a lot from Peggy, and she wouldn't be lying there for no reason.  

Tuesday, February 26, 2013

Obama's Brain Map Proposal

As I said earlier in these musings.  The number one reason I voted for Obama was his attention to Alzheimer's.  He's not kidding around.   I'm very excited about this, and hope that American's see the need to map the brain, just like the human genome project, this could lead to incredible discoveries that will help cure, treat and prevent diseases like our dreaded Alzheimer's.  You can read more about it in the New York Times here.  Human Brain Map
The Tissue is the Issue

Monday, February 11, 2013

10 years

I know it's been at least 10 years, because Sunny my oldest daughter turns 10 today.  Peggy had been repeating herself a lot, we would find notes she made for herself and she just seemed... distant.
Then she didn't come to visit me after Sunny was born. Personality change, that was listed as a symptom on the Alzheimer's Association website, and I knew now not to take it personally and it was time to act upon our hunches that maybe Mom has Alzheimer's Disease.

Ten years ago, I had no idea we would be still be here, and that the disease would still be progressing.  I didn't know I would have two wonderful daughters that would remind me of what a great Mom Peggy was.  As I watched Sunny blow out her candles, I remembered how she helped me plan my 10th birthday party, ice skating and hot chocolate.   I was a brand new Mom ten years ago when I first took my Mom to the doctor, then gently encouraged her to move into an independent living facility, told her she couldn't drive anymore, moved her things into an assistant living center and eventually out here to California with me.  I'm not a new Mom anymore, and have learned how to talk to caregivers and neurologists, exchanged baby diapers for adult ones, learned how to maneuver wheelchairs and still keep her hairdresser appointments.

Peggy, Me and Sunny 2004
Don't get me wrong, I'm not a fool, and don't see that what I've learned along the way are due compensation for this rotten, mind destroying disease.  It's just, that on this happy birthday, I can reflect on the past 10 years and see past her diagnosis, and into the person and mother she is.  This comes  through when I hear Sunny's beautiful song and in the words Gidget said to me on Saturday. We were having a special  "Mom and Gidget" day together and I asked her what she wanted to do next, and she said.  "Let's go visit Nana"
Gidget and Nana