LOTS HAS HAPPENED

LOTS HAS HAPPENED SINCE MY LAST POST...mostly positive.

Good news first -

We've made some new friends,

     my garden is growing well,

         another granddaughter on the way - due in September (Rachel & Trevor),

              and, after 3 and 1/2 years - the tremor that plagued my right hand is still gone! 

Bad News:  walking and balance are becoming an issue, as well as being able to speak.

Good News:  I have a programming session scheduled at Stanford on Monday that should resolve those.

Friends:  We had a nice lunch with Tom & Jackie from our local Parkinson's Support Group.  I really like them.  Tom had DBS a few years back, and it's good to be with others to compare notes.

Garden:  Everything in pots - no dirt in the back "yard"... but they're growing well, tomatoes, cukes, basil, zucchini, rosemary, kale, brussel sprouts, and other edibles keep me busy.

Granddaughter:  Last I heard, her name is Olivia Lynne, aka Vida's little sister.  Our Miracle Girl - Rachel didn't think she could have any more kids after her massive cancer treatments, but Ta Dah!  We're excited!!!

REALLY GOOD NEWS:  I'm heading to Alaska again!  Fishing, Family & Friends.  Can't beat it - salmon fishing at it's best.

A Battery-Operated Brain

On January 9th I had out-patient surgery at Stanford to switch out my impulse generator.  The battery was running out of energy and needed to be replaced.    A week later, here at home, I was changing the dressing on my chest incision

My grandson asked, "Grandpa, what's THAT?" I replied, "I had a little operation."  Leo exclaimed, with a look of horror on his face, "The doctor cut you?  WHY?  (Leo is 5 years old).

My response was limited by my inability to speak in long sentences,  "I have a battery powered brain."   He quipped, "Grandpa, you're a robot!"  and proceeded to run around the house yelling,  "Mommy, mommy, did you know that Grandpa is a robot?  He has batteries!"

Life is good.

"My Final Answer..." (at least 8 - 10)

I know that's a lame title for this post, but it's 2:50am - I'm awake, my fingers are working, but I'm not certain my creativity is up to par.  Continuing with the Q&A ......

Q8):  What is the battery life of your IPG?
A8):  Three to five years relative to the amount of voltage output.  November 13th is my surgery anniversary ( since 2009 ), and I noticed that my remote control readout says my IPG is at 2.90v as opposed to the 2.96v it's been registering, until about 4 months ago.  What does that mean?  I'm not quite sure, but my doc at Stanford didn't seem worried about it during my last visit.

Q9):   What is the hardest thing to deal with about Parkinson's - physically?
A9):  Actually, over the past 6 months, I've noticed having difficulty swallowing, more coughing, and most obviously, the speaking issue.  My current inability to communicate effectively has taken a toll on our quality of life, and Beckie, my wife and caregiver finds herself isolated and frustrated.  I feel quite helpless most of the time, like Cher, my sentiments are, "If I Could Turn Back Time."

Q10):  My (relative or friend) has Parkinson's.  Could he/she qualify for DBS surgery?
A10):  Age, general health, mental stability and attitude all play into the  process of qualifying for DBS.  I was 55 when first diagnosed, had DBS surgery at 58 and have been quite healthy until diagnosis.  My attitude has been optimistic and my cognitive abilities intact.  If I were 75, with physical complications, I might not qualify.   Depending on your friend's situation, they may or may not qualify.  In my opinion, they should definitely check into the possibility -- sooner, rather than later.  **Beckie adds a footnote:  it's been our observation and personal experience that many neurologists drag their feet (big time!) in even suggesting - let alone being proactive - that the patient pursue the possibility of DBS.  YOU may have to ask for a referral --- and not take no for an answer.  What do you have to lose?

Bonus Q:  Is it true that smokers have a very low incidence of Parkinson's?
A: Yes.   They aren't sure exactly why, but it's true.  However, if you have PD, smoking won't make it go away.  (Even though some say it possibly extends the "ON" time in patients)   I've never smoked more than a handful of times in 60 years.  However, if it does give relief and less side effects than traditional PD medication, maybe................. What would you do?  Like I have often said if Parkinson's doesn't get you, the medications will.   (See my post from a year ago, Oct 13, 2010 about why I feel strange most often.)

And, Ladies and Gentlemen, on that 'positive' note, I'm going to try to go to sleep.  It's 3:58am and all is well.  (It's not, but let's say it is). 

"Night, night" he whispered - with visions of Peter, Paul and Mary on a late night infomercial singing distant strains of 'Puff the Magic Dragon..." followed by the Beatles reminiscing with "Yesterday."  (go ahead, sing along with me:  'yesterday....... all my troubles seemed so far away'  ....fading, fading, f a d i n g  ,  f   a   d  i   n   g  ..........  G' night John Boy.

It Never Rains in California...

Those lyrics and melody echo in my brain: "but girl, don't they warn ya - it pours, man it pours."

When it rains, it pours...the perfect mental picture of our journey this past month.

Drizzle, Drizzle: A six-month programming session at Stanford on January 11th...kicking up the voltage in the right side of my battery powered brain to 4.1 milliamps - helping to minimize recent difficulties on the left side of my body...

Downpour: My ability to speak and speak clearly has been severely impacted for quite some time now. Two things are going on simultaneously - the first can be compensated for by speaking from my diaphram and making an effort to articulate and ennunciate each word. The second challenge is more disturbing, at least in my mind, because for some reason there is a disconnect between my thought process and actually saying the words... especially when I try to multitask and explain something. As a result, talking on the phone is quite futile these days - and face to face is almost as bad (unless you can read lips).

Deluge: Moving out of our house of 11 years (including our home business) and relocating to southern California with a 'forced' retirement was taxing to say the least. Without the help of some dear friends, Barry and Sandy Barnes, we'd still be trying to get out of there. I'm totally amazed that Barry still likes me - I don't know how many times he had to say 'huh?' or how many times he pretended to understand what I just asked him to do-especially when I was tired, which was most of the time.

That goes for my wife, Beckie, too. There were moments during our move that I pushed her to the limits of her ability to tolerate my physical and mental inabilites. The fact that she didn't walk out on me is a testimony of God's grace.

In our 39 years together, I've never seen her so stressed out - especially the morning of the day we were to pack a truck with the things we were going to take with us. The night before, we received a phone call from our son-in-law informing us that he, Jenna, Leo and Tesla (who will arrive in late March) will be moving to Philadelphia to take a new position with the Dept. of Defense. The home we had planned to live in would no longer be there come April.

We drove the 9 hours to Murrieta, anyway, as planned - just not with the rental truck, but our minivan loaded to the gills... not really certain of our final destination.

We had either sold - or given away - almost everything we owned by the time we headed down the highway with those belongings we just couldn't part with. Beckie's analogy of the Beverly Hill-billies in their overcrowded vehicle bouncing down the road wasn't too far off the mark. Looking in our mirror, the view of the road behind us was obscured by piles of loose clothing stuffed to the ceiling of our Toyota minivan...with plasic bags of socks and underwear filling in the few spaces that were left. I can hear that hill-billy banjo playing now...

Over our lifetime we've made signicant moves numerous times, but the circumstances on this venture were VERY different. In the past, it was always a joint effort - now, the ball was in BECKIE'S court. I was probably more hassle than help this time. Correction -- I WAS more hassle than help this time. Consequently, my hat is off to my wonderful wife who definitely bore the brunt of the pressure. For a short time, I was praying earnestly that she wouldn't crack. Thank God, she didn't. Frankly, the more I stayed out of the way, the better it was for everyone concerned.

And Now, for the rest of the story ..... you'll have to wait until it's written.

KW