Oligo Woe Is Me

Greetings!  Been a little while since I’ve posted.  The days seem to just slip by.  That’s a good thing up here in Northern Vermont.  It snowed a little yesterday.  And the day before.  Today, and this weekend, hopes to see maybe a leap into the very low 60’s. 

Anyway…today’s blog title is pretty accurate on how I’m doing.

As “they” say, I’ve got good days and I’ve got not so good days.  Actually I thnk “they” call them bad days.  But I like to keep my glass half full if you know what I mean.  When I first wake in the morning, it’s hard to get out of bed.  But with a little prodding from the kids I roll out, take my morning cocktail of meds, and it can then go either way.  I’m either feelin’ alright, or I’m nauseous and fatigued.  But push through the pain and I can shine it on for most of the day.  The weird symptoms with coordination continue, and I’ve got some weird “ticks” in my appendages.  They almost seem to be “nano-seizures” because it’s my body doing something I’m not consiosly intending.  I can really not suspect or blame it on medication, which was a theory before.  But I’m off of anything that would cause the loss of coordiantion.  So either my brain rewires itself, or it’s permanaent.  Either way, it’s ok.  I’m nimble.  I can adjust.

Who misses the Captain and Tennille?  The Captain played some funky keys.  Not like Billy Preston or anything, but for someone having to split his time between playing the keys and being the captain of some vessel…he’s pretty OK.

I still don’t drive.  I still can’t focus on more that one thing at a time.  I’m easily confused by seemingly simple tasks.  I walk into rooms and forget why I went there.  But as long as I’ve got the Captain and Tennille and Billy Preston around I’ll be fine.  I’m still Rob.

~R

Home, home again

I like to be here when I can.

And when I come home cold and tired

 It’s good to warm my bones beside the fire.

Yes…I am home!  And I apologize for the delay in getting this blog entry posted.  The problem is the I’ve lost some cognitive coordination, and even worse, coordination of my fingers.  I say worse because given a choice I’d rather be a little wacky upstairs than struggle with something I’ve done for 30 years super-hero style.  Figure something like clicking a mouse with your index finger, but your middle finger clicks instead.  Or forgetting where the keys on a keyboard are.  I hope it will come back.  Crazy, huh?   I think I’ll need a personal secretary to dictate my blogs to.  Oh yeah…I have a personal secretary already.  Thanks Kasey!

I will post again soon.  I promise.  I’d like to share the post-treatment effects I am experiencing.  As well as my “Flock Of Seagulls” hair style.

Peace and love,

Rob

…by the friendship and support from everyone around me.

A bunch of friends have put together a raffle where someone will win an iPad 2.  The proceeds will go towards helping us out in a couple of ways.  They have also setup and way for others to get involved with selling the raffle tickets within their own circle of friends. 

See the details on the link at the right under “Want To Help?” 

Thank you friends.  Thank you.  Thank you.  Thank you.

Peace and love to all,

Rob

(Posted from an iPad)