"Mr. Miller, remember you have Parkinsons..."

When my doctor at Stanford uttered those words, the hair went up on the back of my neck. (If I had any hair on the top of my head, I'm certain it would have reacted, too.) I have never liked someone telling me that I CAN'T do something. Strong willed. (God's currently working on that personality trait)

Dr. Bronte-Stewart made that comment in response to my frustration that the DBS surgery didn't fix EVERYTHING, even though it optimized the tremor in my right arm and hand. I know I was whining a bit. I had told her that I was hoping after the surgery that I'd be able to get back to my old regimen. She asked me what that was, and I told her I worked 14 hours a day - 7 days a week. At which point, she asked "Why would you want to do that?" My response was, "Because I like what I do. I don't consider it work." That's when she said, "Mr. Miller, remember - you have Parkinson's. You won't be able to do that anymore."

I thank God everyday for the benefits of DBS surgery. All I have to do is turn my battery powered pulse generator OFF for a few minutes, and believe me, it's not pretty. Thank you Dr. Henderson (my surgeon), Dr. Bronte-Stewart (my movement specialist) and Wendy Cole (my system programmer). With everything working properly, I have a reasonably normal life. However, that ugly PD monster is lurking in the background and raises it head often.

People see me around town and almost everyone says, "Ken, you look great! How are you doing?" My stock response is and has always been, "Great!" (Nobody really wants to hear negative, right?)

The real truth is, Parkinson's sucks. It's a Good News - Bad News deal... The good news is - I can hold a video camera VERY still (which means I can work again). The bad news is - I can't manipulate the mouse on my computer to edit (which means I CAN'T work again.) Under pressure, my fine motor skills are next to worthless. What make's matters worse is my brain doesn't process quickly - and conversations are extremely difficult.

For two months after my DBS system was turned on, I was excited. My thinking was sharp and quick and talking was not a problem. All that has changed.

Sooooo, the real answer to people asking, "How are you doing?" is "I'm really glad I had the DBS surgery, my hand is steady as a rock, but Parkinson's is taking its toll, physically and mentally. I can't even imagine that I'll have to endure this the rest of my life (and it will only deteriorate without a cure.)"

If I try to explain myself, my brain goes nuts and I can't even complete a whole sentence. Things become very uncomfortable and it goes downhill from there. That's why I usually say, "I'm doing good... hangin' in there."
Okay, Okay, Okay. Enough negative already. I had to get that out on paper. I feel better now.

I want everyone to know that my wife, Beckie is an amazing woman. This ordeal is harder on her than it is on me... and her (our) daughter is dealing with cancer, her sister's husband has FTD (Frontal Temporal Dementia) and has been forced to retire, and Beckie has some health challenges, herself, etc,etc,etc.

Angels have to be lifting her up. Over the past months, her patience with me has been extraordinary. She is certainly a woman who walks with God. Thank you honey, from the bottom of my heart. Love has many faces and you wear them all very well.

If you are a praying person, pray for mental and physical strength for Beckie and pray for our daughter, Rachel. I know that they can benefit from your prayers. Thanks for reading this post. (and yesterday's post, too)