From a 7 to a 1

Dad called me yesterday at 4 p.m. crying.  He said he didn't feel right.  He said he'd called Dr. Warnock.

I rushed over to the house with Morgan.  Mom was asleep as she has been recovering from shingles.  As sweet as he is, he didn't want to wake her up and worry her.  He was shaky and jittery and looked lost and scared.  He said he felt like his insides were shaky.  I worried about his heart or if he was having a panic attack and felt like he was going to die.  He couldn't explain it.

I woke mom up and told them Dr. Warnock would be over when he got off work to check on him.  After a few minutes of visiting with him and letting him talk, he calmed down.  He said it was the worst he has felt since this battle with LBD began.  

The crazy thing is, the last few weeks have been amazing.  My brother and I had even been speculating that maybe he was healed.  Dad wondered the same thing.  Then, B-A-M, just like a nightmare that sneaks up on you, the LBD is back.

That's the nature of this ugly disease...it's a roller-coaster ride of ups and downs, loops and twists, good days, and bad days.  Patients can go days, weeks, or months seemingly normal and then have days, weeks, or months where the LBD is obvious.

Dad said he felt like he went from a 7 (on Monday) to a 1 (on Tuesday).  

He said he couldn't remember his phone number earlier in the day when he left a message with someone, and he had trouble getting his words out when he called his doctors for some information.  He had trouble verbalizing how he felt to me.  His voice was weak and muted like it was just prior to his diagnosis.  His tremors were worse, and he even had several whole-body jerks.  Quite frankly, it was a crappy day.  A day that scared him...a day when he caught a glimpse of what a future with dementia could hold.

How scary would it be to be told "You are losing your mind....you will lose your mind" yet to be fully aware of that fact?  It's one thing to lose your mind and not know it; it's another to consciously watch yourself slip away.  It's devastating.

He says that next time going from a 7 to a 1 won't be so hard because he knows what to expect.  But, who knows on a day like that if he will be able to process and remember that information or if he will feel like a lost, scared little boy all over again.

October is Lewy Body Dementia Awareness month.  Will you help us spread the word about this disease that is little known but all too common?  Visit www.lbda.org and read about this condition.  If you have end of the year charitable donations to give, consider giving to this organization.  The more research and education we have, the sooner we will have a cure. 

Going from a 7 to a 1 is not acceptable.  We have to end this.