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

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.

THIS BUD'S FOR BILL

In my previous post, I mentioned a “G-Tube” (Gastric feeding tube) and I want to comment on that for a moment.

The lady at the restaurant told me about her neighbor who had reached a point  in his Parkinsons journey where he couldn't swallow ….. so he had a G-Tube surgically placed for nourishment.

I mentioned to Beckie, (my wife) that if I ever reach that point, I DO NOT want to have a G-tube; I’d like you to understand why  I feel that way.  It all comes down to Palliative Sedation.

Ten years ago, in 2003, I was sitting with Bill (my best  friend), his immediate family, Beckie and a lady from the local Hospice organization.  We were in his living room listening to the Hospice representative carefully explain about palliative sedation.

Bill was seated in his wheelchair beside me.  He’d had a G-tube inserted months before, through the skin, directly into his stomach.   He had not been able to speak for quite some time, and the decision to place the G-Tube was made because he had such difficulty swallowing.  Bill was near the end of a 6 year battle with ALS - a terminal illness also known as Lou Gehrig's Disease - and we were discussing hospice care.

At that point in time, I had not been diagnosed with Parkinson's -  didn’t have a clue what was ahead for me.  I thought I was healthy and just wanted to be there for Bill.  I remember telling people that he was Moses and  I was his Aaron - speaking  for him as needed.  We had reached the point where, most often by his body language and his eyes, I could tell what he was thinking  and I knew he was very anxious about this particular gathering.

The lady from Hospice chose her words carefully, as each of us tried to grasp the meaning of what she was saying.  "When we reach the point where Bill is very close to dying, and we know it's only a matter of days or hours," she continued, "and there is nothing else we can do for him, the least we can do is make him comfortable and not feel any pain.  Once we put that in motion, however, it's final.  He will be sedated and in a state of euphoria until he crosses over."  I realized that basically they would put him into an induced sleep - feeling good - until his nourishment was depleted, which typically would only be a matter of days.  He would not know anything after that fist injection.

There was a fly in the ointment, though.  Bill had a G-tube...and according to Hospice protocol,  Hospice personnel can only be involved when all other avenues have been exhausted.  As such, a feeding tube disqualifies the patient because it constitutes life support -  possibly extending his life for a very long time.  The only way Hospice could step in would be for Bill to get rid of the G-tube.  Bill wasn’t ready - at that moment - to go there, so it was a moot issue.

All of that background, hopefully, explains why I told Beckie that I didn't want a feeding tube; I just want to go when my time is up.

I realize that the issue is not a simple one.  We could probably effectively argue both sides all night long...but that's my experience in a nutshell.

Oh yeah, on a lighter note, Bill and I would occasionally each have a beer together before he had the tube inserted.  One afternoon, while visiting with him, G-tube intact, he indicated he wanted a Budweiser.  I looked him in the eye and asked, " In there?"  He nodded, with a big smile on his face.     So……… I grabbed a 16-oz. can of that brown Kool-Aid, popped the top, put a funnel on the tube, and we took turns - a sip for me, a drip into the funnel for Bill...sip for me, drip for Bill...each time the beer hit the funnel I quipped,  "THIS BUD'S FOR YOU!

"And that," as Paul Harvey used to say at the end of every broadcast, "is the rest of the story."

"Good Day!"

D'Nile

Today I had some lunch at Souplantation after dropping Beckie off at work. Halfway through my meal, an older couple entered and proceeded to sit in the booth across from where I was sitting.  The lady was "well-kept" - with meticulous makeup and clothing, poise and grace (like someone you'd see at South Coast Plaza in Newport Beach).

The man was well dressed - looking like he was in his early eighties - but immediately it was obvious something was amiss:  the tell-tale shuffling gait and 'freezing' as he got to the table.  Then the awkward process of trying to slide into the booth (which he navigated by himself while the woman went to get drinks).  Once he was seated, I looked for any kind of tremor, but it was minimal. 

The woman returned and they began eating.  I  watched painfully as he tried to eat his salad with a fork (remembering how big a challenge that was for me before DBS surgery).

His face had the typical Parkinson's mask appearance and he didn't talk...except to blurt out "I have to go to the bathroom."  At which point the lady got up to assist him, reaching out her hand to try to pull him up to a standing position, while reaching down with her other hand to try to swing his legs around so he could stand up.  Watching him struggle to get out of that booth was difficult, to say the least.  (Too many memories of my own)

The lady ( I assumed she was his wife) graciously and patiently walked him arm in arm to the restroom - at which point I got up from my seat and followed at a distance, finally meeting up with her at the pasta bar.  As I approached, I quietly asked, "How long has your husband had Parkinsons's?"

To my utter amazement, she replied, "Oh, he doesn't have Parkinson's.  He has Dementia and Alzheimers!  He's 96 years old!    To which I responded with  "I've had Parkinson's for 7 years, but I had brain surgery to minimize the tremor."

She replied, "Our neighbor had Parkinson's for 17 years.  He passed away this past year - he couldn't swallow anymore so they put a tube into his stomach." 

I tried to keep a pleasant look on my face as I remembered my friend, Bill, in the last year of his battle with ALS (Lou Gehrig's Disease), trying to sustain himself with that G-tube protruding from his tummy.  We exchanged niceties for a moment and then she excused herself saying,  "I have to keep a close eye on him."  That was the extent of our conversation.

That's not the first time I have seen someone with obvious symptoms of Parkinson's Disease who was in denial about it.  Maybe they think because there is no tremor, that  it's just old age.  I don't know.    But it astounds me that someone close to them doesn't drop a hint!  That man had Parkinson's...shuffling, freezing upon trying to navigate narrow spaces, facial muscle droop, no strength in the core muscles, very slow movements, etc., etc.

He is probably too old at 96 to be a candidate for DBS,  but there is no doubt he could benefit by taking carbidopa/levodopa medication for Parkinson's.  But then, I am no doctor.  I am however, in the center of my own battle with continuing debilitating symptoms, and I know one when I see one.

What's the moral of the story?

Never forget that D'Nile is a river in Egypt...and its far, far away!

Denial, on the other hand, is sometimes too close to home.

Kenny Wayne

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.