Easy to be Hard

This week, our Parkinson's Support Group held a potluck.

Our friends, Tom & Jackie graciously picked me up at our house and drove to Bear Creek community - about 15 minutes north of Murrieta.  Beckie couldn't attend because of work.  Bear Creek is a gated community surrounding a golf course with a very nice community center building.  Lorna was hosting the potluck.  Jackie's enchiladas were a big hit, as well as my smoked salmon...both of which disappeared quickly.

It worked out that I didn't sit with Tom &J ackie, but sat with two couples who lived there at Bear Creek:  Roland & his wife and another couple originally from New York City.  Breaking a cardinal rule, I didn't focus enough to remember their names, even though we were all wearing name tags.  I will be more diligent next time.

Without Beckie there to carry the conversation, I felt helpless, because as the discourse continued, it inevitably got  to the point where I couldn't verbalize my thoughts.  And, it was noisy in the room so the louder I tried to speak, the more stressful it became - which in turn caused more anxiety...making it extremely difficult to verbalize my thoughts. It was a vicious cycle and  I found myself shutting down once again into a frustrating, unpleasant and depressing silence.  AWKWARD!!! 

Beckie is such a help to me in those situations when she speaks for both of us.  It gives me time and space to slow down, collect my thoughts and relax.  I get into trouble when trying to say long sentences as opposed to simple phrases.  Mentally multitasking has become a real challenge - they call it Executive Functioning - which I used to be able to do with flying colors.  The more things (thoughts) on my plate, the merrier.  But now - I'm limited to one thing at a time.

I don't know which is worse, physical incapacity or not being able to express myself in conversation.  I think the latter is worse.  It becomes a constant battle to not withdraw and to avoid social situations... much to Beckie's chagrin.  I think the toughest part is knowing that, before PD, I could carry any conversation, anytime, anywhere - with anyone.  And now, half the time, my 5 year old grandson can't even understand me.  THAT is hard.

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.

Questions about DBS...

Jefferson Jones asked some specific questions about the DBS process and I asked Beckie to respond at length.

Here is Beckie's response:

Hi Jeff,

We try to remind people all the time that NO surgery is without risk.  I'm pretty sure that the % of surgical complications in DBS is practically nil - compared to say that of open-heart, etc.  Not to say it doesn't happen.  I always say that when you can't live with the complications of your disease, then you willingly jump onto the DBS bandwagon! 

In retrospect, we now realize that there were questions we didn't even know to ask prior to surgery!  And in our experience, you don't always get told all the details .... I think because those in the medical profession are SO familiar with the details, that they accept all that comes with it as normal process - forgetting that all this is NEW to we patients (and family & friends).  That said, no question is too simple --- that's their job ... to provide the answers.  Your neuro team should be able to tell you what to expect as a normal process of healing.  Severe headache, nausea, fever ..... these are NOT good and should you experience these symptoms, contact your DBS hospital/ER/team immediately.

re:wires ---- I guess it stands to reason that relatively fragile wires can only withstand so much stress.  Everything we've read and heard has instructed us to avoid obvious activities like sky-diving, chiropractic adjustments to the neck, crazy rides @ Disneyland and your grandkids throwing themselves around your neck ..... just kidding about that last one.  But seriously, as Ken mentioned in his previous msg to you, the kids slamming against the IPG can be painful.  As far as the wires showing -- Ken is mostly bald and we have YET to have someone notice his DBS bumps & wires unless we point them out.  Since you have hair, I doubt even your family will notice once all your hair grows back. (good question for DR --- do they shave your whole head or just partial?)

I love that you are asking questions.  It helps Ken & I refresh our memories of our journey and hopefully be a help to others if we use our convos as a basis for future blog posts.  Along the way we have had the opportunity to attend several seminars for PD patients and have found them helpful.  If you haven't already, check out local & regional PD support groups online to see if they post upcoming events, etc.  We also belong to the Yahoo DBS group @  http://health.groups.yahoo.com/group/DBSsurgery/

you can subscribe directly from that page.

This group has a huge database of information -- the only caveat I generally issue is to use the grocery store method when it comes to postings --- take what you need & leave the rest, remembering that there are people posting from all over ---  some who've had great experiences -- some not.  I would add that for the most part, those who've NOT had good DBS experiences typically had surgery done at a hospital that was convenient to where they lived and advertised that they 'do' DBS, but in reality didn't have the history/experience really necessary. This is SOOOOO important to understand and something I ALWAYS  emphasize when encouraging people toward DBS:  the DBS surgeon/team experience/ability is as important as the programmer's experience/ability ---- if the surgeon doesn't place the probes exactly, then no matter how great your programmer is, you are most likely not going to have a great DBS experience and conversely, no matter how well the probes are placed, if your programmer doesn't truly understand what they are doing, you're not going to be happy with the outcome.  Bottom line: the place you choose for your surgery is VERY important.  The Yahoo group has an article in the database of FAQs --- it covers a lot of these types of things.

Phew!!!! that was long-winded!!  Hope you don't mind .... but there's nothing more important than getting all the info you can when making life decisions.

Be blessed.

Beckie Miller

ps:  if you'd prefer to email Ken/me directly, pls feel free @ ken.group20@gmail.com or beckie.group20@gmail.com

41 and counting

NO... That's not a birthday (I wish).

It's our Anniversary!!!!

Today completes our 41st year together.

I love you, Beckie Lynn Keifer Miller.

The best is yet to come.

Q & A with Jeff Jones

Here are 3 good questions sent to me by Jeff Jones

hi ken, question #1: will I be bed ridden after the dbs operations?


question #2: do you kinda forget u have wires and electrodes in your brain eventually?

and question #3: do u always have to be careful of infection?

thanx much,

 jeff

And my response:

Great questions...

1)  my surgeries were on two separate days

a. on a Friday afternoon, thy placed the electrodes.

b. the next Wednesday they placed the Impulse Generator in my right chest and hooked up the wires.

the Friday surgery took about five hours.  I stayed overnight and went home at noon the next day.  No pain.  I slept for almost 3 days, though.

the Wednesday outpatient surgery was uneventful - I woke up starved & convinced my wife to take me out for dinner!  From that point on I was back to a normal at-home routine.  I did not have any event work scheduled during the 6 weeks surrounding my surgeries, so that really helped a lot.  Don't think I could have done 8 hr days.  Any surgery seems to take its toll & some find themselves really affected by the process of the body ridding itself of anesthesia.

2)  Yes, except when one of my grandkids bump my IPG or the bumps on my  head.  I have never had the sense of electrodes being in my head ..... occasionally in the winter I'll feel a tightening of the wires that run up my neck to the top of my head under the skin - so I'll wear a hat.  But I'm bald - so maybe I'm a bit more exposed.

3)  You really only need to be concerned while healing from the surgical incisions -- both on the head & on your chest.  Once healed, it doesn't seem to be an issue.... at least that was true in my case.

My Blog: 

 www.ActuallyItIsBrainSurgery.blogspot.com

"Better"

  

My dad passed away four years ago.  I remember vividly, when we'd ask him how he was doing, he'd almost always say, "better!"   Now it's my turn to carry that torch. 

Let me explain...

When people watch some of my videos or they read from this blog, then see me in person, they typically say, "hey, you're lookin' good!"  In many cases, I think they expected to see a decline in my physical appearance and ability because of the disease. 

Others, after spending time with me, have the opposite reaction - if they're honest.  Usually these people are individuals who have Parkinson's and are hoping that DBS has totally cured me of all symptoms.  They'll remark something like this.  "Man, I was hoping you'd be doing better than you are.  Your balance isn't too good, and you speech is pretty bad."  At which point I can only shrug my shoulders and nod my head in agreement.

Why am I telling you this?  Because if you have PD and are considering DBS, I want you to know the truth.   I'm doing BETTER!  Better than I'd be without it.  And if I had to do it all over, 

I would do it again - no question.

It's easy to forget how things were and think that the irritations I'm experiencing today are bad.  But in reality, without DBS, it would probably be intolerable.  I  remember the incessant shaking of my right hand, and the accompanying ache - it about made me crazy.  After almost four years of cover-up with implanted electrodes, I've almost forgotten what that was like.

The bottom line:  Don't fear this procedure.  It will bring a sense of normalcy into your life.

As for me...I'm doing "BETTER!"

Go Ahead and Comment!

I have two new friends:  Jeff Jones and David Opdycke.

Jeff responded to a youtube video and we've emailed back and forth a couple of times. He is a fellow musician - playing the guitar and singing.  (at least he could do both a couple of years ago) and hoping that after his DBS surgery in June, he'll be able to strum again.  I hope so, too.  His songs - Chasing Rainbows and Calling All Angels are really good.  I don't think he would mind if I were to tell you to check out his Youtube channel. It's  Jefferson1111.  Thanks, Jeff for your email interactions.

David Opdycke is a friend of a friend of our in-law relatives in the San Diego area.  We talked a bit on the phone last week (Beckie spoke to him most of the time) and we're planning to meet with him in person soon.  Dave is planning to have DBS next month, also.

In our conversation, Dave said that he (and others) have tried posting to this blog and couldn't do it.

Thanks, Dave, for the head's up!  We've hopefully fixed that issue. Now anyone can post comments and it should work.  Give it a try - either Beckie or I will answer you back.

To Jeff and Dave:  It's great to know some fellow warriors in the battle against PD.

And for those of you following this blog, the first question Dave asked me was, "Would you do it again?" (DBS, that is)    My response was - and continues to be - "Yes.  Without hesitation."

My life is better today because of DBS.