Expect the Unexpected

“Changes all around me - sometimes I wish that it weren’t so.

But these changes deep inside me help me get where I want to go.”           

Little did I realize the significance of those lyrics when I penned them in 1993.

“Changes” was the title of that ballad on the FIRED UP album.  Back then, I was very insecure about singing the lead vocal, but today I’m glad I did it…especially with the challenges I’m experiencing with my voice.  Writing and producing each song on the albums “ONE by ONE” and “FIRED UP!” was probably the most rewarding project of my entire life.  Music is the language of the soul…and the emotions of that era are resurrected when I hear their familiar melodies.  If you would like, you can listen to the songs on my personal website at www.group20kennywayne.com – they’re listed on the Original Music tab on the home page.

One thing we can be certain of in this world is change.  Change can be rewarding even when it is painful.  It all depends on our view of life…you know, the glass is either half empty or half full.  We can be a victim or a victor…we have a choice as to our reaction to life’s challenges.

Looking back on the lyrics of “Changes” however, I would rewrite the phrase:  “...WANT to go” replacing it with “…helping me where I NEED to go.” 

Life changes are not always comfortable.  ‘Wants’ and ‘Needs’ are two different animals. This past year has seen big changes inside of me.  I’m sure those internal changes are a result of the many tangible changes that Beckie and I have experienced this past 12 months…for instance – some of the tangible changes: 

< Beckie is working full time now and I’m home alone;

< We have a new neurologist, having moved our treatment from Stanford Medical Center in Palo Alto, to Cedars Sinai in West Los Angeles;

< Anticipating our youngest daughter’s family moving to Northern California this month as a result of a career change for her husband, Sam;

< Our ­oldest daughter and her husband have connected with a great church group in the San Diego area and are benefiting from that association;

< Anticipating outpatient surgery soon to replace my neuro-stimulator battery for the second time in 5 ½ years…much shorter than expected (because of the high voltage settings necessary to keep the symptoms at bay);

< Making new friends at our 55+ senior apartment complex and at our local Parkinson’s Support Group monthly meetings;

< My ability to communicate vocally is a major challenge.  I’ve attempted twice now to videotape a 5 years since DBS surgery (to add to the ‘1-year’ and ‘3-years after’ videos already posted on YouTube on my ‘april13kid’ channel)…and failed to adequately articulate my current situation.  I’m not sure right now as to when or how I’m going to pull that off.

 < We’ve recently been introduced to Young Living Essential Oils as well as some herbal supplements that are very promising in alleviating a number of symptoms I’m dealing with both physically and mentally, and am pleased with the prognosis.

As far as my internal response to that list:

< I’m finally giving myself permission to relax from always having to ‘produce’…and becoming comfortable with ‘retirement’ and all that entails.  Being home alone with limited mobility has been an adjustment to be sure;

< Adjusting to new doctors at Cedars Sinai has been relatively easy.  Dr. Tagliati and Dr. Tan have been a great encouragement to me.  I’m very happy with their abilities.

< I’m learning that with my daughters and their children, I don’t have to ‘speak’ to be ‘heard.’  They don’t need to know what I care about, they just need to know I care…about them.

< The same is true with new friends in the community.  I’ve come to realize that I don’t have to impress people with my words or ideas.  If I will just sit with someone, ask a question once in a while, and listen to whatever they have to say, more goodwill is accomplished than by my eloquence or by trying to impress them with my knowledge.  By being forced to limit my spoken words I’m learning there is much wisdom in “holding one’s tongue.”  ‘Type A’ personalities (like myself) don’t learn this truism easily.  It usually takes a crisis and then it’s still difficult.

< Finally, I want to say how totally thankful and impressed I am with my wife, Beckie.  For the past year, she has been a customer service manager for a large retailer and has weathered some fierce storms (both with physical leg pains and “pains in the neck” so to speak - with customers).  I’ve seen both strength and grace develop in her to the point where she is like a different person.  She is my hero.

“Changes all around me - sometimes I wish that it weren’t so.

But these changes deep inside me help me get where I NEED to go.”        

My friend Francis Anfuso wrote:

“What response to a great disappointment will set you on the path of God’s choosing.  Expect the unexpected.”  

"ADVERSITY HAPPENS"

    My thoughts after reading the New Yorker's article on Parkinson's Disease, April 28, 2014,  "Have You lost Your Mind?" ---

Apparently, many people who have PD are ashamed and/or embarrassed about the diagnosis.   Do they see it as a personal failure?   Or, maybe a defect?

My personal attitude is that 

1) it's not a personal failure - because, as far as I know, I had nothing to do with acquiring it,

2) and yes, it's a defect.  So What?  Does that make me "bad" or "undesirable"?     No way!

I've had a lot of personal success over the past 60 years, creating a strong self-image  (good news) - but, also strong enough to foster an un-healthy level of pride and independence (bad news -  too much of anything can become a negative, IMHO.)

Actually, I want people to know that I have PD.  I want people to know 'why' I look and respond the way I do.  Most of the time I'm smiling inside - something  desperately lacking in my demeanor.  (I've tried to notify my face, but unfortunately it doesn't respond to my mental commands  very well.) 

Because I had DBS surgery, My Parkinson's tremor is gone -- however, my speech has been extremely impacted.  I recently made a calling card to help break the ice with strangers:  

Today, at age 63, Parkinson's is not a 'career buster' for me, but rather a journey to a new place - mentally, physically, emotionally and spiritually. 

Fortunately, my diagnosis came at a time in my life when my vocation was morphing into a technological rat race.  I had been pleased with my accomplishments by age 55, but not necessarily excited about chasing the learning curve of the tech/video future.    (Maybe that apathy was a non-motor symptom of PD -- undetected at the time)   I was ready for a change - but not necessarily Parkinson's

Now, mind you, I'm not a stranger to change - having lived in numerous locations from:

               Philadelphia to Anchorage,   New York City to Detroit,

               North Hollywood to Modesto,  Sacramento and Yuba City, CA.  

Currently residing in North San Diego County, in retirement, I look back at the many hats I've worn since the 1960's: 

o   professional musician, magician/entertainer;  laborer/carpenter on the Alaska Pipeline;

o   construction superintendant;  racquetball and fitness club manager/owner; 

o   roller skating rink owner/operator;  Independent Business Owner with Amway Global; 

o   professional videographer  and audiovisual contractor,  producer/director. 

To be certain, I've had a very full life and my bucket list is small.  I'm sure there will be some surprises yet to come, but I have learned that  adversity happens.  How we respond to adversity determines our well-being in this life...and potentially, it determines our status in the next life to come. 

I don't like Parkinson's Disease.   It has grossly altered the dynamics of our lives - Beckie, our children and grandkids have been negatively impacted.  It has forced us into a place of pain and emotional trauma - a place, in some small way reminiscent of the trouble encountered by the ancient patriarch, JOB...a place of psychological and philosophical drama...a place,  however, where I am learning about faith and hope.  A place  where I'm connecting with my Creator -

A place where the 'glass is half full' --- always.

ACCORDING TO CAREY .... OUR FIRST GUEST POST!!

Our good friend, Carey, over at AccordingtoCarey, invited us to guest post for her October 31-day challenge: Surviving Chronic Illness. It's a privilege to share some hard-earned thoughts on the journey with her readers and with you. Sooner or later, you or someone you know will face an unexpected health crisis - this series could help with the process. Check it out and share, share, share! Beckie 


     If I were to list for you all the people in our life who have faced chronic or life-threatening illness you’d probably start running in the opposite direction. Suffice it to say, we know a few …. including ourselves. The one positive about this is, when meeting people for the first time who are facing a medical diagnosis, our personal story and experience give us some credibility.
     There’s nothing more rewarding than being able to pass along knowledge that might help someone on their journey. Through our blog we have the opportunity to connect with people from around the world. We find ourselves repeatedly talking about certain issues that I refer to as my “soapboxes” ….. one of them being advocacy.

ADVOCATE FOR YOUR PATIENT
     It’s pretty easy to find yourself overwhelmed in the medical process. There’s not just physical stuff going on, but the emotional side gets kicked around pretty well too. That’s why, as a patient, having an advocate is so very important. NO ONE should EVER be in hospital or attending doctor appts by themselves -- there's just too much room for error in the process ... especially when the patient is struggling physically or mentally, or is in pain. I’d say it’s next to impossible for the patient to advocate for themselves and a second 'ear' is always good when interpreting what the Doctors or other medical professionals might share with you. We often take my sister-in-law along with us to Ken’s neuro appointments. Many times she has been the ‘voice of reason’ for us, both during the appointment by offering pointed questions and later, as we attempted to piece together all the new information that had been offered.
     We live in amazing times and most likely the first thing most of us do when handed a medical diagnosis is to RUN to Google, so it may seem trite to remind you of some basics. But utilizing the ‘basics’ will eventually give you a strong foundation for understanding and analyzing everything that may come your way on this journey.
     So……
Join an online support group - these can provide a broad over-view (you will need to use the grocery store method: take what you need and leave the rest)
Join a local support group -- these people will have invaluable information on what type of support is available locally. They’ve ‘been there, done that’
Ask for reading suggestions -- and don’t worry if it all seems like gibberish, it will eventually begin to make sense. It’s a lot like learning a new language.

ADVOCATE FOR YOURSELF    
     The patient in your life gets a lot of attention …. as well they should. But if you find yourself in the position of caretaking or advocating, you can’t forget yourself. There have been plenty of articles documenting stories of caretakers who actually pass before their patient. It’s very easy to focus, focus, focus on taking care of everyone else but you. Guess how I know this?
     I’m still learning to give myself permission to address my physical and emotional needs. My sister has been such a good example to me in this. Her husband has Frontal Temporal Disease and most of their life together, as they knew it, has disintegrated. She has found ways to nurture her heart and her body that allow her to gather her strength. She gets therapeutic massages for stress, she walks to and from work through all four seasons, she bought a kayak and spends quiet, restful moments on the lake, she surrounds herself with people who are encouragers in word and deed, and when she’s having a really hard day she makes Apple Dumplings. She’s practically world-renowned for those things! She takes care of herself, because no one else can.
     I’m learning from her. I also try to remind myself not to hold my breath figuratively. I’m trying not to put ‘life’ on hold as we walk out this process. It’s a really easy thing to do -- put your life on hold. Then you look back and realize you haven’t enjoyed the little, everyday moments that make up a life. I want to fully appreciate those moments -- reading out-loud from my mother-in-law’s journal as we complete yet another holiday round-trip drive, having the patience and time to let my grandkids ‘help’ prepare meals and together, work on a puzzle …. for the 10th time that day , and getting lost in the eyes of our 3-week-old newest grandgirl, knowing therein lies an ocean of love.

Facing down illness is a tough road, full of twists and turns with always challenging and ever changing terrain. The goal is to travel as gracefully as possible. Together, we can help each other do that.

Terrance cultivated tomatoes...

Whenever I write and post something that is critical and negative about Parkinson's Disease, I run the risk of sounding like I'm whining.  To the contrary, I don't believe there is anything more significant to a person with this insidious condition than empathy - identifying with someone who is experiencing the same feelings and frustrations. That's why I write...for you who have PD.

For those of you who don't have PD, but are still interested, this is a look "inside the Parkinson's Brain" - figuratively speaking, of course.

Up until two days ago, I had mixed feelings about the speech therapy process.  In my analytical  world, I don't like to be told to do something without knowing WHY I'm doing it.   Initially, I was told to say "aaah" as loud and as long as I could in a mid-range tone.  They were testing my capacity for breathing with my diaphragm.  It also became a benchmark to assess progress or decline over the course of time.  There are some other exercises we do, also, but frankly, I tolerated these in hopes that we would go deeper into understanding the problem and maybe finding acceptable solutions.

A light went on when my therapist answered a question I had asked about why I couldn't read aloud a long sentence...one that any 5th grader could tackle with ease.  In so many words, she said my problem was physical not necessarily mental.  What I  am attempting to do (what I used to do without effort) is to synchronize my tongue, jaw, lips and vocal chords with my lungs and diaphragm until my air supply is used up, take another breath and repeat the process.  "No problem," you say.  Except in the case where none of the above muscles are working properly.  I run out of air after four or five syllables.  This is where I need to focus my attention and practice.  Now I understand WHY I need to practice and WHAT it is I need to practice...synchronizing those muscle groups.

Here's an example:   "Terrance cultivated tomatoes and turnips in his terrace gardens."  When I try to read that at a volume of about 80 dB (so people can hear me), I quickly run out of breath.  I have to break it up into manageable phrases...

Terrance -(breath)- cultivated -(breath)- tomatoes and turnips -(breath)- in his terrace -(breath)- gardens.

Try that for yourself - aloud, breathing  in deeply at each break.  Now, try it without reading words from a page, but rather think a thought, visualize the words - with breath spaces - then say them.  If the person you're addressing, can't hear you, say it again - louder...one sentence at a time.

How did you do?  For a guy like me that is used to doing everything at warp speed, it can become very interesting.  My perception at this moment in time - is that asking me to try harder, is not unlike asking a person with Cerebral Palsy to try harder to sit up straight.

Hopefully, with time and practice, my talking will improve.  Practice, practice, practice.  If you are considering speech therapy:  Don't discount it early on.  Hang in there - find out WHY you need to practice then the WHAT will make sense.

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