October 2, 2012 – Charades, Sleep and Save the Date!

I’ve never enjoyed playing charades, mostly because I’m not very good at it.  Marcia’s speech has turned what used to be normal conversations into a modified version of Charades.  While she tries to say the word or words, she relies on gestures constantly, and will point to/show us what she’s trying to say when the words aren’t clear.  Sometimes my kids and I get Marcia’s point, but not without a lot of effort, clarifying questions and guessing.  And sometimes we can’t figure out what she’s trying to say.   

                                       

I’ve written often about how Marcia inspires me (and others).  People with Primary Progressive Aphasia and Alzheimer’s often battle depression.  While Marcia has had many moments of sadness, frustration and feelings of isolation, she quickly rebounds and shows flashes of spunk.  I’m still amazed at her will and perseverance.  She is engaged with us, wants to be part of the conversation and rarely shows frustration.  She goes to soccer and lacrosse games and sits with friends, still teaches her classes, enjoys running errands and absolutely loves the company of all those who drive her to and from classes at the YMCA, and HealthQuest.  She always tries so hard, still laughs and smiles.  And she lights up when she see’s people she knows. 

But she knows she can’t do what she used to do.  There are things I see that are typical of Alzheimer’s patients, but very atypical of Marcia before AD.  Withdrawing from social situations is one of the big changes I’ve seen in Marcia.  This will be the first year in as long as I can remember that we will not be attending a Halloween Ball to support our friend’s Autism charity event.  Marcia can’t handle the noise (she can’t process conversation well when there many sources of noise) and she told me she “can’t talk”, or carry on a conversation.  While she loves seeing people, she tires quickly and can take only so much watching vs participating in conversations.  Marcia hasn’t lost her love of social opportunities; she just doesn’t maintain the adrenaline rush very long.

And she sleeps more than ever.  Marcia has always been a fan of the eight-hour-a-night sleep concept.  She gets at least 9 hours a night now, many nights she gets 10.  She also naps most afternoons.  Our evening schedules are always pretty busy, especially when one or both kids are playing one or more sports.  Soccer, lacrosse, fencing practices and games have us running around central New Jersey.  Usually Marcia and I would “wind down” around 10:00 by watching something on TV we both liked.  Before 10:00, Marcia would get her computer time in, either doing email, working up music routines for her fitness classes, scrapbooking, etc…  She hasn’t really done any scrapbooking in months and rarely looks at email anymore.  Sleep has really replaced her computer time, and we rarely watch TV together in the evenings.  She is generally asleep by 10:00. 

After 10:00 is when I write here, read, take care of bills and write thank you’s to the many that we have been blessed to have in our lives, making an awful situation as comfortable as possible.

I’ll close this entry with some exciting news on the fund raising front.  In the two weeks since Marcia’s “Tribute Page” has gone live, we’ve raised more than $20,000.  Those that have donated have been very generous.  And just today, October 2^nd, my daughter and her friend Mike were given a date for our 5K run for Alzheimer’s for next spring.  SUNDAY, JUNE 9 at White Oak Park in Branchburg. Much more to come here, but I’m proud of Riley and Mike for the idea and for doing the permits and everything else required to get this started.