tag:blogger.com,1999:blog-56265371304617732882024-03-13T01:50:18.542-07:00Actually, it IS brain surgery!Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.comBlogger58125tag:blogger.com,1999:blog-5626537130461773288.post-29166757404869985552015-05-10T20:23:00.001-07:002015-05-10T20:23:54.650-07:00Expect the Unexpected<div class="MsoNormal">
<i>“Changes all around me
- sometimes I wish that it weren’t so.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>But these changes deep
inside me help me get where I want to go.” <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Little did I realize the significance of those lyrics when I
penned them in 1993.</div>
<div class="MsoNormal">
“Changes”<i> </i>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 <a href="http://www.group20kennywayne.com/">www.group20kennywayne.com</a> –
they’re listed on the Original Music tab on the home page.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Looking back on the lyrics of “Changes” however, I would
rewrite the phrase: “...<u>WANT</u> to
go” replacing it with “…helping me where I <u>NEED</u> to go.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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: </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
< Beckie is working full time now and I’m home alone;</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< We have a
new neurologist, having moved our treatment from <st1:placename w:st="on">Stanford</st1:placename>
<st1:placename w:st="on">Medical</st1:placename> <st1:placetype w:st="on">Center</st1:placetype>
in <st1:city w:st="on">Palo Alto</st1:city>, to Cedars Sinai in <st1:place w:st="on">West Los Angeles</st1:place>;</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< Anticipating
our youngest daughter’s family moving to Northern California this month as a
result of a career change for her husband, Sam;</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< Our oldest
daughter and her husband have connected with a great church group in the <st1:city w:st="on">San Diego</st1:city> area and are
benefiting from that association;</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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);</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< Making new
friends at our 55+ senior apartment complex and at our local Parkinson’s
Support Group monthly meetings;</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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.</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As far as my internal response to that list:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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;</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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.</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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.</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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.</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
< 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.</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal">
<i>“Changes all around me
- sometimes I wish that it weren’t so.<o:p></o:p></i></div>
<div class="MsoNormal">
<i>But these changes deep
inside me help me get where I </i>NEED <i>to
go.” <o:p></o:p></i></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
My friend Francis
Anfuso wrote:</div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
“What response to
a great disappointment will set you on the path of God’s choosing. Expect the unexpected.” </div>
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-left: .5in; text-indent: -.5in;">
<br /></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com15tag:blogger.com,1999:blog-5626537130461773288.post-38634924256218095552014-05-13T10:41:00.000-07:002014-05-13T20:11:51.884-07:00"ADVERSITY HAPPENS"<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i> My thoughts after
reading the New Yorker's article on Parkinson's Disease, April 28, 2014, "Have You lost Your Mind?"</i> ---</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My personal attitude is that </div>
<div class="MsoNormal">
1) it's
not a personal failure - because, as far as I know, I had nothing to do with
acquiring it,</div>
<div class="MsoNormal">
2) and yes,
it's a defect. So What? Does that make me "bad" or
"undesirable"? No way!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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 <u>un-healthy </u>level of pride and independence
(bad news - too much of anything can become
a negative, IMHO.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.)
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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: </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjakrweyorlIl1-I5bS_wzdzmlxrLXGNsshWATZPy0b-DMZUGKRgiwjHRcM2fnWRb7OBxuAjb-P_6DeW2FKn273pQtng7Ne9TShWuurpuQoXTvu0XMMvS1QG_QDyRUWNe5_wXRQjmf7x-0/s1600/Scan0034.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjakrweyorlIl1-I5bS_wzdzmlxrLXGNsshWATZPy0b-DMZUGKRgiwjHRcM2fnWRb7OBxuAjb-P_6DeW2FKn273pQtng7Ne9TShWuurpuQoXTvu0XMMvS1QG_QDyRUWNe5_wXRQjmf7x-0/s1600/Scan0034.jpg" height="200" width="320" /></a></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now, mind you, I'm not a stranger to change - having lived
in numerous locations from: </div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Philadelphia to Anchorage, New York City to Detroit, </div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
North Hollywood to Modesto, Sacramento and Yuba City, CA. </div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
Currently
residing in North San Diego County, in retirement, I look back at the many hats
I've worn since the 1960's: </div>
<div class="MsoListParagraphCxSpFirst" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 1.0in; margin-right: 0in; margin-top: 0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->professional musician,
magician/entertainer; laborer/carpenter
on the Alaska Pipeline; </div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 1.0in; margin-right: 0in; margin-top: 0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->construction superintendant; racquetball and fitness club manager/owner; </div>
<div class="MsoListParagraphCxSpMiddle" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 1.0in; margin-right: 0in; margin-top: 0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->roller skating rink owner/operator; Independent Business Owner with Amway
Global; </div>
<div class="MsoListParagraphCxSpLast" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 1.0in; margin-right: 0in; margin-top: 0in; mso-add-space: auto; mso-list: l0 level2 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "Courier New"; mso-fareast-font-family: "Courier New";">o<span style="font-family: 'Times New Roman'; font-size: 7pt;">
</span></span><!--[endif]-->professional videographer and audiovisual contractor, producer/director. </div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
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. </div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
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 - </div>
<br />
<div class="MsoNormal">
A place where the 'glass is half full' --- always.</div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com10tag:blogger.com,1999:blog-5626537130461773288.post-16882241752866046222013-10-08T11:49:00.000-07:002013-10-08T12:14:41.678-07:00ACCORDING TO CAREY .... OUR FIRST GUEST POST!!<i>Our good friend, Carey, over at <b><a href="http://www.accordingtocarey.com/">AccordingtoCarey</a>,</b> 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
</i><br />
<br />
<br />
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.<br />
There’s nothing more rewarding than being able to pass along knowledge that might help someone on their journey. Through our <b><i><a href="http://www.actuallyitisbrainsurgery.blogspot.com/">blog</a></i></b> 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.<br />
<br />
<b>ADVOCATE FOR YOUR PATIENT</b><br />
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.<br />
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.<br />
So……<br />
<b><i>Join an online support group</i> </b>- these can provide a broad over-view (you will need to use the grocery store method: take what you need and leave the rest)<br />
<i><b>Join a local support group</b></i> -- these people will have invaluable information
on what type of support is available locally. They’ve ‘been there, done that’<br />
<i><b>Ask for reading suggestions </b></i>-- 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.<br />
<br />
<b>ADVOCATE FOR YOURSELF </b> <br />
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?<br />
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.<br />
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.<br />
<br />
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.Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com10tag:blogger.com,1999:blog-5626537130461773288.post-73905262299822909762013-10-01T19:55:00.000-07:002013-10-08T12:00:44.233-07:00Terrance cultivated tomatoes...<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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 <i>WHY</i> I need to practice and <i>WHAT</i> it is I need to practice...synchronizing those muscle groups.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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...</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Terrance -(breath)- cultivated -(breath)- tomatoes and
turnips -(breath)- in his terrace -(breath)- gardens.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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 <i>WHY</i> you need to
practice then the <i>WHAT</i> will make sense.</div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com2tag:blogger.com,1999:blog-5626537130461773288.post-34607458891319393412013-09-28T11:47:00.000-07:002013-10-08T12:04:55.296-07:00Easy to be Hard<div class="MsoNormal">
This week, our Parkinson's Support Group held a potluck.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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!!!
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-64823141089730095772013-07-04T10:40:00.001-07:002013-10-08T12:06:56.757-07:00LOTS HAS HAPPENED<div class="MsoNormal">
LOTS HAS HAPPENED SINCE MY LAST POST...mostly positive.</div>
<div class="MsoNormal">
Good news first - </div>
<div class="MsoNormal">
We've made some new friends, </div>
<div class="MsoNormal">
my garden is growing well, </div>
<div class="MsoNormal">
another granddaughter on the way - due in September (Rachel
& Trevor), </div>
<div class="MsoNormal">
and, after 3 and 1/2 years - the tremor that plagued my right
hand is still gone! </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bad News: walking and
balance are becoming an issue, as well as being able to speak. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Good News: I have a
programming session scheduled at Stanford on Monday that should resolve those. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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!!!</div>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
REALLY GOOD NEWS: I'm
heading to Alaska again! Fishing, Family
& Friends. Can't beat it - salmon fishing at it's best.</div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com1tag:blogger.com,1999:blog-5626537130461773288.post-58870591700183687962013-05-21T08:31:00.000-07:002013-10-08T12:10:38.354-07:00Questions about DBS...<br />
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
Jefferson Jones asked some specific questions about the DBS process and I asked Beckie to respond at length.</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<span style="font-size: 12.800000190734863px;">Here is Beckie's response:</span></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
Hi Jeff,</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
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! </div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
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.</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
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?)</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
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 @ <a href="http://health.groups.yahoo.com/group/DBSsurgery/" style="color: #1155cc;" target="_blank">http://health.groups.yahoo.<wbr></wbr>com/group/DBSsurgery/</a></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
you can subscribe directly from that page.</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
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.</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
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.</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
Be blessed.</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
Beckie Miller</div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.800000190734863px;">
ps: if you'd prefer to email Ken/me directly, pls feel free @ <a href="mailto:ken.group20@gmail.com" style="color: #1155cc;" target="_blank">ken.group20@gmail.com</a> or <a href="mailto:beckie.group20@gmail.com" style="color: #1155cc;" target="_blank">beckie.group20@gmail.com</a></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com2tag:blogger.com,1999:blog-5626537130461773288.post-60098671304922746012013-05-20T10:02:00.000-07:002013-05-20T10:02:25.344-07:0041 and counting<br />
NO... That's not a birthday (I wish).<br />
<br />
It's our Anniversary!!!!<br />
<br />
Today completes our 41st year together. <br />
<br />
I love you, Beckie Lynn Keifer Miller.<br />
<br />
The best is yet to come.Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com1tag:blogger.com,1999:blog-5626537130461773288.post-8883191801319129072013-05-20T09:54:00.000-07:002013-05-20T09:55:58.766-07:00Q & A with Jeff Jones<br />
<div class="MsoNormal">
<span style="font-size: x-small;">Here are 3 good questions sent to me by Jeff Jones</span></div>
<div class="MsoNormal">
<span style="font-size: x-small;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;"><br /></span></span>
<span style="font-size: x-small;"><span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">hi ken, question #1: will I be
bed ridden after the dbs operations?</span><span style="font-family: Arial, sans-serif; line-height: 115%;"><br />
</span></span><br />
<br />
<span style="font-family: Arial, sans-serif; line-height: 115%;"><span style="background-color: white; font-size: x-small;">question #2: do you kinda forget u have wires and
electrodes in your brain eventually?</span></span><br />
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: xx-small; line-height: 115%;"><br /></span>
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: xx-small; line-height: 115%;">and question #3: do u always
have to be careful of infection?</span></div>
<div class="MsoNormal">
<span style="font-family: Arial, sans-serif; font-size: x-small; line-height: 115%;">
<br />
<span style="background: white;">thanx much,<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: xx-small; line-height: 115%;"> jeff</span><o:p></o:p></div>
<div class="MsoNormal">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; font-family: Arial, sans-serif; font-size: 8pt; line-height: 115%;">And my response:<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">Great questions...<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">1) my surgeries
were on two separate days<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">a. on a Friday
afternoon, thy placed the electrodes.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">b. the next Wednesday
they placed the Impulse Generator in my right chest and hooked up the wires.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";">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.<o:p></o:p></span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
My Blog:<span style="color: #222222; font-family: Arial, sans-serif; font-size: 7.5pt;"> </span></div>
<div class="MsoNormal" style="background-color: white; background-position: initial initial; background-repeat: initial initial; margin-bottom: 0.0001pt;">
<span style="color: #222222; font-family: "Arial","sans-serif"; font-size: 7.5pt; mso-fareast-font-family: "Times New Roman";"> <span style="color: #1155cc; mso-bidi-font-size: 11.0pt;"><a href="http://www.actuallyitisbrainsurgery.blogspot.com/" target="_blank">www.ActuallyItIsBrainSurgery.blogspot.com</a></span></span></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com2tag:blogger.com,1999:blog-5626537130461773288.post-20150488680957049472013-05-19T20:05:00.000-07:002013-05-19T21:01:10.933-07:00"Better"<br />
<div class="MsoNormal">
<o:p> </o:p> </div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Let me explain...</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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, </div>
<div class="MsoNormal">
<u><br /></u></div>
<div class="MsoNormal">
<u>I would do
it again - no question.<o:p></o:p></u></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The bottom line:
Don't fear this procedure. It
will bring a sense of normalcy into your life. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As for me...I'm doing "BETTER!"</div>
<div class="MsoNormal">
<br /></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com1tag:blogger.com,1999:blog-5626537130461773288.post-51453904963336416082013-05-17T16:14:00.001-07:002013-05-17T16:28:00.101-07:00Go Ahead and Comment!<br />
I have two new friends: Jeff Jones and David Opdycke. <br />
<br />
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.<br />
<br />
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.<br />
<br />
In our conversation, Dave said that he (and others) have tried posting to this blog and couldn't do it.<br />
<br />
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.<br />
<br />
To Jeff and Dave: It's great to know some fellow warriors in the battle against PD.<br />
<br />
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." <br />
<br />
My life is better today because of DBS.<br />
<br />
<br />Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com5tag:blogger.com,1999:blog-5626537130461773288.post-8265951263948807292013-04-21T20:40:00.000-07:002013-04-21T20:40:52.790-07:00THIS BUD'S FOR BILL<br />
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">In my previous post, I mentioned a “G-Tube” (Gastric feeding
tube) and I want to comment on that for a moment.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">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!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">"And that," as Paul Harvey used to say at the end of
every broadcast, "is the rest of the story."<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 10pt; line-height: 115%;">"Good Day!"<sub><o:p></o:p></sub></span></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com2tag:blogger.com,1999:blog-5626537130461773288.post-60688074717578088022013-04-16T08:15:00.002-07:002013-04-16T08:24:37.176-07:00D'Nile<span style="font-family: Times, Times New Roman, serif;"><br /></span>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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 <st1:placename w:st="on">South</st1:placename> <st1:placetype w:st="on">Coast</st1:placetype> <st1:placetype w:st="on">Plaza</st1:placetype> in <st1:city w:st="on"><st1:place w:st="on">Newport
Beach</st1:place></st1:city>).<o:p></o:p></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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). <o:p></o:p></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif;"><span style="font-size: 12.0pt; line-height: 115%;">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. </span><span style="font-size: 12pt; line-height: 115%;">Watching him struggle to get out of that booth was
difficult, to say the least. (Too many
memories of my own)</span></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: 12pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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?"<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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."<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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." <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif;"><span style="font-size: 12.0pt; line-height: 115%;">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. </span><span style="font-size: 12pt; line-height: 115%;">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.</span></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">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.<o:p></o:p></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">What's the moral of the story?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">Never forget that D'Nile is a river in <st1:place w:st="on"><st1:country-region w:st="on">Egypt</st1:country-region></st1:place>...and its far, far away!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;">Denial, on the other hand, is sometimes too close to
home.<o:p></o:p></span><br />
<span style="font-family: Times, Times New Roman, serif; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><span style="font-family: Times, Times New Roman, serif;">Kenny Wayne</span><span style="font-family: Lucida Sans Unicode;"><o:p></o:p></span></span></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-22820982092837694292013-01-30T10:40:00.001-08:002013-04-16T08:24:09.115-07:00A Battery-Operated Brain<br />
<div class="MsoNormal">
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</div>
<div class="MsoNormal">
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). </div>
<div class="MsoNormal">
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!"</div>
<div class="MsoNormal">
Life is good.</div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com3tag:blogger.com,1999:blog-5626537130461773288.post-2854107148090444722012-10-17T19:50:00.000-07:002012-10-17T19:50:55.396-07:00Three Years and Counting<div>
Hey, Y'all!</div>
<div>
</div>
<div>
I'm celebrating almost 3 years of tremor-free life since DBS surgery.</div>
<div>
Anniversary date is November 13. Thank all of you for your encouragement, support and prayers. </div>
<div>
</div>
<div>
</div>
<div>
Life is a gift...cherish it.</div>
<div>
Life is short...grab it.</div>
<div>
Life is good...enjoy it.</div>
<div>
Life is tough...learn from it.</div>
<div>
Life is a training ground...get ready.</div>
<div>
</div>
<div>
</div>
<div>
Someone told me a long time ago: "It 's not what happens to us that is important, it's how we respond that matters."</div>
<div>
</div>
<div>
</div>
<div>
It's a great day.</div>
<div>
</div>
<div>
use this link: <a href="http://www.youtube.com/watch?v=17ch1guvoLA" target="_blank">www.youtube.com/watch?v=<wbr></wbr>17ch1guvoLA</a></div>
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-25570355276275795892012-08-17T08:47:00.000-07:002012-08-17T08:47:16.176-07:00Still Going!It's the middle of August, 2012.<br />
November 13 will be the 3rd anniversary of my DBS surgery.<br />
<br />
<br />
Bottom Line: <br />
GOOD NEW FIRST - Tremor is Gone. Associated aches Gone. Meds down 75% from before DBS. Very significant. No real signs of PD when I'm in public and ON.<br />
<br />
BAD NEWS - Talking and normal communication (other than simple hello's and quick phrases) is bad. My wife get's SOOOO frustrated. Voice is soft, articulation is minimal, and if I get frustrated, it only gets worse.<br />
<br />
When I had my first psych testing at Stanford, the doc asked me, "if you had to choose between opitmizing the tremor and being able to talk well, which would you choose?" Not really understanding the significance of the latter, I said that optimizing the tremor was most important.<br />
<br />
Today, I still stand by that choice, but must admit that verbalizing my thoughts is a far greater issue than I realized.<br />
<br />
When I type like this, letter by letter, I can correct my typing, take my time, and appear articulate. In person, it can be a disaster. I feel like a total social misfit.<br />
<br />
Sometime between now and November 13, I'll re-visit my "turning off the pulse generator" like I did on my first DBS anniversary. This time, I'll leave it off longer... I want to see if my speech process will improve with the unit OFF. We'll see.<br />
<br />
Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-2038159399282187702011-11-13T20:59:00.001-08:002011-11-13T22:06:34.593-08:00TWO YEARS AGO...Many, (many) years ago I played a lot of Racquetball. Charlie Brumfield's name comes to mind for those of you who like to time travel...<br />
<br />
I remember when I got a new Ektelon composite 250G racquet. <em> </em>I didn't realize how great that racquet was until one day I forgot it at home and had to play with my old racquet. What a difference!<br />
<br />
Two years ago, today, - at 9pm - I was in the recovery room with my wife and daughters after having brain surgery at Stanford Medical Center. The nurse had just given me some "night, night, sleep tight" meds and Beckie and the girls were getting ready to go back to the hotel. Tomorrow I would go home with Zippers on my bald head (check out the photo) They call it, Deep Brain Stimulation Surgery. <br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3UBrbsl459zxO8oWoEABe4t18jqqlrnshpuIyY2RjzKm_Mm-0-VpvGtEwgHx6FBIJdAh1x30lZbhBBnoCaUQKBSgTc7WUFxefWH4zaT5cDYAhy8A0oM_MFvHx5xBUUPCEzLrvE_KXyR0/s1600/Kens+head+Zippers+from+blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3UBrbsl459zxO8oWoEABe4t18jqqlrnshpuIyY2RjzKm_Mm-0-VpvGtEwgHx6FBIJdAh1x30lZbhBBnoCaUQKBSgTc7WUFxefWH4zaT5cDYAhy8A0oM_MFvHx5xBUUPCEzLrvE_KXyR0/s1600/Kens+head+Zippers+from+blog.jpg" /></a></div>
<br />
Today is November 13th, 2011. A few minutes ago, Beckie came running up to me with a great big smile and said, "Happy Anniversary". My first thought was, "we got married in May." She looked at me quizically and repeated: "Happy Anniversary". I'm thinking, "what's today? what's the date?' She repeated again, "HAPPY ANNIVERSARY!!! It's November 13th - two years ago... your surgery!" Sherlock Holmes I am not. Probably closer to Dragnet: remember the theme song (you have to kind of hum it), 'Dum, de dum dum... dum de dum dum, dumb!'<br />
<br />
It's just like the new racquet scenario. It's easy to forget about the old racquet when you play everyday with the new one. In spite of the challenges I face today, DBS changed my life. I don't shake - and haven't had any tremor on my right side for TWO years. Thank you, thank you, thank you - everybody who helped make this possible.<br />
<br />
I love my battery operated brain... Two years and counting.<br />
Life is Great!Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com1tag:blogger.com,1999:blog-5626537130461773288.post-60016512788348118912011-11-03T07:26:00.000-07:002011-11-03T09:46:01.747-07:00Talk to Me, Please!Yesterday, I ran into a friend I hadn't see for months. She mentioned that she had been following my (this) blog. I realized that there are many people I don't know who are reading. <br />
<br />
I'd really like to know who you are - if you're following my journey. (It would highly motivate me to post more often.) I don't fully understand how the system works, so, if you are unable to post a comment here, go directly to my personal email and let me know: <a href="mailto:ken.group20@gmail.com">ken.group20@gmail.com</a><br />
<br />
Thanks a Bunch and thanks for caring. Sometimes the road can be lonely.<br />
Kenny WayneKenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com4tag:blogger.com,1999:blog-5626537130461773288.post-88487700116738755432011-10-29T02:55:00.001-07:002011-11-03T09:47:38.042-07:00"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 ......<br />
<br />
<strong>Q8): What is the battery life of your IPG?</strong><br />
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.<br />
<br />
<strong>Q9): What is the hardest thing to deal with about Parkinson's - physically?</strong><br />
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."<br />
<br />
<strong>Q10): My (relative or friend) has Parkinson's. Could he/she qualify for DBS surgery?</strong><br />
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?<br />
<br />
<strong>Bonus Q: Is it true that smokers have a very low incidence of Parkinson's?</strong><br />
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.)<br />
<br />
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). <br />
<br />
"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: <em>'yesterday....... all my troubles seemed so far away' ....</em>fading, fading, f a d i n g , f a d i n g .......... G' night John Boy.Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-40813997451328985002011-10-25T07:58:00.000-07:002011-10-29T10:05:35.641-07:00Miracles DO Happen!The fact that I'm posting again within a week is truly (well, kinda) a miracle...<br />
<br />
Actually, I wanted to pick up where I left off:<br />
<br />
<strong>Q4) How does DBS work?</strong><br />
A4)
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="line-height: 115%;"><span style="font-family: Times, "Times New Roman", serif;">A
battery-pack (<em><span style="font-family: "Calibri","sans-serif"; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-latin;">impulse generator or IPG</span></em>) was
surgically placed under the skin beneath my collarbone. The 2 wires from the
IPG are threaded together up the side of my neck and continue to the top of my
head where they split off and connect to the 2 'Leads'.<span style="mso-spacerun: yes;"> </span>(I had bilateral DBS-both sides - so the
IPG feeds both.) The leads are wires, each containing 4 electrodes, which were
strategically placed with the help of GPS signals (yes - really!) into a kidney-bean-sized
structure deep in my brain called.... the Substantia Nigra.<span style="mso-spacerun: yes;"> <span style="font-family: Times New Roman;">Specific 'voltages' (from the IPG) are applied in milliamps to various combinations of electrodes to get varying results. Too much voltage can cause localized 'pins & needles pain' - or a number of other unpleasant side effects. BUT.... just the right amount can optimize tremor and other symptoms. </span></span>All the wires on the outside are tunneled
under the skin - so most people never even notice - unless I point them
out. That's amazing, considering I'm bald.<span style="mso-spacerun: yes;"> </span>I guess people just think I have a bumpy
head!</span></span></div>
<br />
<strong>Q5) Do you have any negative side-effects?</strong><br />
A5) Yes, I do.<br />
When I had my first neuropsych test before surgery, the doc asked me this question: "If you had the choice between being able to speak clearly, OR get rid of your tremor, which would you choose?" My response was, "Do I have to choose?" "Well," he answered, "there is a 60% chance of the surgery affecting your speech center in a negative way."<br />
<br />
My answer to him was, "most of my life, I've been on stage - entertaining people with my voice. If those days are over, no problem. As long as I can play with my grandkids and hold them close, it doesn't matter if my speech is affected."<br />
<br />
Today, I can play and intract with Leo, Vida and Tesla. Unfortunately, I cannot carry a normal conversation - even with my wife. The grandkids are too young to notice..... yet. But I must admit that Leo (almost 4 years old and going on 14) looks at me very strangely when my words get all confused. We're working on that. It a long, long road.<br />
<br />
That said, however, I'd have DBS surgery again in a heartbeat - even with the speech challenge.<br />
<br />
<strong>Q6) Why doesn't Michael J. Fox have this surgery?</strong><br />
A6) I don't know the answer to that question. He may not be a candidate because of prior surgeries performed. I'm only guessing at this point.<br />
<br />
<strong>Q7) Is DBS reversible?</strong><br />
A7) Yes! When a cure is found, I'll turn my system off with no regrets.<br />
<br />
As Porky Pig used to say, "That's all Folks!" at least for today. <br />
I'll process more Q & A when I've recover from this round of typing.<br />
<br />
Popeye put it more succinctly, "I've had all I can stanz ...... and I can't stanz no more." (the backspace key, that is.)<br />
<br />
It's a great day. :-)<br />
<br />
Kenny Wayne <br />
<strong></strong>Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-77985498178644412062011-10-21T10:05:00.000-07:002011-10-21T10:15:09.013-07:00TOP TEN??I can hardly believe that my last post was in April. So much has happened since then.<br /><br />I don't want to bore you with the details, so I won't. Suffice it to say that on my most recent flight, I met a lovely young woman who asked me a lot of questions about Parkinson's Disease and DBS surgery and it prodded me to post today.<br /><br />I realized that there are, what I call, "the top 10 questions", most people ask right off the bat. I'll list some of them in this post, but remember - I'm not an expert. I'm just a normal person who has early onset PD and on 11/13/09 had Deep Brain Stimulation Surgery (DBS).<br /><br />Here are some - in no particular order:<br /><br />Q1) "I've seen interviews with Michael J. Fox. He really flails around a lot. Is that typical of Parkinson's symptoms?"<br /><br />A1) Actually, MJF's movements are called 'dyskinesia" and are primarily a side effect of the key drug prescribed for PD called L-Dopa...generic for SINEMET.<br />The opposite is "bradykinesia" which is a true PD symptom where your muscles become rigid and stiff and you can hardly move at all. The choice is: take no medication and be 'paralyzed' or take L-dopa and put up with dyskinesia.<br /><br />Q2) Are there any options for avoiding dyskinesia?<br /><br />A2) Only one that I'm aware of - DBS. In my case, I experienced a significant tremor in my right hand before DBS. Stopping that tremor was the key reason for having the surgery - with the hope of delaying the onset of drug-induced dyskinesia at least for a few years. (I'll have to check into it, but I don't think dyskinesia is ever a symptom of PD. Ironically, since my last program session, I'm experiencing some intermittent dyskinesia in my right foot and leg and it's not clear to me, yet, why that's happening.)<br /><br />Before surgery, I was taking generic SINEMET 50/250 6 times a day. (That's a bunch!) After DBS, dosage dropped to 25/100 5 times daily - 60% reduction. Since my last checkup in Septmber, I've cut that in half! However, the voltages in both sides of my brain have been stepped up significantly - from the original 2.2v to 4.1v and back to 3.6v after powering up a third electrode in the last program session.<br /><br />Q3) What are the symptoms of PD and do you have any pain?<br /><br />A) Not everyone with PD has tremor. I did. It's not cured, only masked. If I were turn OFF my system, it would come back with a vengence, within 20 seconds.<br />I don't have any pain per se, just muscle aches.<br />Other symptoms include:<br />Moving slowly. (If I intentionally try to hurry, my body actually resists and goes even slower. That is NOT fun when I'm in line at a security checkpoint at the airport!)<br />Fatigue. (also a side effect of meds)<br />Muscle weakness. Especially core body strength. Ask anyone with PD how dificult it is to turn over in bed. (I feel like my body is covered with Velco.)<br />Impacted Gait and shuffling. (Navigating the hall and doorways in the middle of the night can be daunting - especially if trying to hurry because I have to go to the bathroom.)<br /><br />There are more, but I'll save them for the next post. I've reached my limit for typing for the day and I'm weary from correcting all the typing errors.<br /><br />Later, Gator.<br />Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com1tag:blogger.com,1999:blog-5626537130461773288.post-16205455309465700412011-04-14T09:32:00.000-07:002011-10-29T10:11:12.637-07:00Hey, I'm 60!<strong>April 13, 2011</strong> <br />
This morning I woke at 7:23am with the Beatles version of "Happy Birthday to You" playing over and over in my head. That was, until the proverbial phone call came from the kids singing the traditional version - our family tradition. I think I heard Leo singing the loudest - all the way from Philadelphia! Whew! what a day it was. Check this out: <br />
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7:23 am - Woke up with the usual Parkinson's muscle stiffness, slowness, shuffle across the floor and 'freezing' at the bathroom door. Don't worry I finally made it through that mental barrier just in time.<br />
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7:45 am - Levodopa kicks in, I can take a shower now. <br />
8:00 am - Prepared one last box for shipping for Jenna that I missed last night. <br />
8:30 am- Loaded up the van with 7 boxes to ship to J & S in Philly. <br />
9:00 am - Headed out to Oceanside... Took the scenic route on Route 76 instead of 78. <br />
9:50 am - Arrived at the Oceanside pier. Thought about the first time my brother-in-law, Pete was here. <br />
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10:15 am - Walked to the end of the Pier just in time to visit the boy's room at Ruby's Diner. I know, TMI, but they tell me that's the way it is when you hit the big 60. <br />
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10:20am - Sitting in Ruby's diner with a 270 degree view of the Pacific Ocean waiting for Ra Ra. <br />
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10:30 am - Ra and Little Vida arrive for breakfast. As usual they were both all smiles. But Vida still isn't sure about Granpa Ken. She'll warm up to me soon. I bribed her with tiny pieces of my waffle. It worked! <br />
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11:14 am - After a scrumptious breakfast (I had homemade corn beef hash with 2 poached eggs and a malted waffle. Rachel splurged with the Cinnamon Roll French toast and 'burnt' bacon while Vida munched on the tiny pieces of everything we set in front of her) and watching the men trying to fish for scrawny little fish <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheTKWfm43MPy2GzYnAUfovR8UorPf8HLtrRVDHU67Vy1vPIIkHaZc2ENDLS-ZfOagSOEPFlDvLW0FiClZbfQu8Q7bjhcTsWPT_rfZrW_tDInIS2Bk801cwGGoLoku9ca5bqD0MsJ0b6Fs/s1600/kenfishwheel-webedit.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5595488178155752802" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheTKWfm43MPy2GzYnAUfovR8UorPf8HLtrRVDHU67Vy1vPIIkHaZc2ENDLS-ZfOagSOEPFlDvLW0FiClZbfQu8Q7bjhcTsWPT_rfZrW_tDInIS2Bk801cwGGoLoku9ca5bqD0MsJ0b6Fs/s200/kenfishwheel-webedit.jpg" style="cursor: pointer; float: right; height: 134px; margin: 0px 0px 10px 10px; width: 200px;" /></a><br />
(I had visions of Alaska when I was 13 years old holding a 30 pound Copper River King Salmon caught in the fish wheel) Yep. That's me in the picture!<br />
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We hiked back to our vehicles just as the meters ran out of money. That was an example of EXERCISING WITH PURPOSE... not exercising just to exercise (like on a treadmill at the gym) but walking the length of the pier and back for BREAKFAST. Oh yeah. Now you're talkin! <br />
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11:40 am - Ra changed Vida in the back of her Chevy van, then they headed back down to San Diego... while I hoped in my van and headed to the Amtrak station. 12:05 pm - Yeah. I found it! (I don't have a GPS yet :-( ) The six small boxes were fine for Amtrak Express Shipping, but the big box with the stroller in it had to go by Greyhound. They were in the same complex. <br />
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1:10 pm - Mission Accomplished. Decided to drive back to Murrieta. <br />
2:30 pm - Back home. Was going to take a nap, but decided to go get a massage since it WAS my birthday. <br />
3:00 pm - massage and foot massage (that's my favorite) walking on clouds for a while. <br />
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5:00 pm - went to dinner. Nope, not at Hometown Buffet. I reserved a table for one at Sam's Club! Mmmmmmm! The secret to surviving a trip to Sam's Club is to have a hot dog combo, a slice of pepperoni pizza and a drink FIRST. Then I'm not tempted to buy every carbohydrate I encounter on my tour of that facility. Not bad, only bought a few items of food, a bunch of batteries and some kitchen items for the new home. Yes, it's true. I had my 60th birthday dinner alone at Sam's Club. <br />
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Don't feel sorry for me. I enjoyed it. That Beatles version of Birthday was back, looping over and over in my brain. (Must've been some sinister implant when they performed the Deep Brain Stimulation) I sat there for a half hour watching the passing parade that was almost as entertaining as the Rose Parade in Pasadena... then I paraded up and down the aisles of the store, myself, like a Treasure Hunter on a mission. <br />
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An hour and a half later, I emerged into the balmy Southern California evening as if I had just exited the Pirates of the Caribbean ride at Disneyland. Ahhh, life is good. I must admit that, for a fleeting moment, I wished that I wasn't alone right then, but frankly, the current symptoms of inability to communicate verbally make my interactions with others so frustrating that I really wouldn't fare well with a 'party' going on. I think the clinical term for it is Social Avoidance. <br />
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8:30 pm - (Back at the ranch) At any rate, I really enjoyed today and I'm exhausted. Time for bed. No more late nights for this old man. Maybe I'll visit Hometown Buffet for lunch tomorrow and try out my new status of SENIOR CITIZEN and get a 50 cent discount! <br />
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I told Rachel at breakfast, that if I had to do it all over again for the past 60 years - I wouldn't change a thing. It's been an excellent journey. <br />
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However, now that I've had some time to ponder that statement, I must say there are two things I would change... one of which I can still change and one I can't: <br />
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1) I want to spend more 'romantic' time with my wonderful life partner. And I resolve to do that as we enter this next phase of our journey. We kind of have a new lease on life here in Southern California and I want to capitalize on this opportunity to do things with Beckie - like we did when we moved here in 1972 (Ironically from Philadelphia). I know my personality has changed with the onset of Parkinson's, but my love for her has only grown. It's easy for 'stuff' to get in the way of relationship. <br />
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2) Too late to change this now, but after the amazing experience of being with Rachel and Jenna and their husbands and children, I wish we'd had 4 or 5 kids. If I had only known how rewarding and fulfilling it is to sit in a room full of grown kids and busy grandkids, I would have had more. Now that I can't see what I'm writing -through the happy tears- I think I'll stop and go to bed. <br />
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No sleeping pills tonight. I'm tired from a great day- my 29,100th day on this earth. Lord, grant me thousands more, or come back soon. I'm good with either option!Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com3tag:blogger.com,1999:blog-5626537130461773288.post-44232193395933542912011-02-24T13:04:00.000-08:002011-10-29T10:14:24.636-07:00Celebrate, Celebrate - Dance to the Music!In 1970, our band opened our shows with those lyrics - a medley from Rare Earth and Sly and the Family Stone. How fitting for this day 40 years later: February 24, 2011... "I just want to celebrate another day of living, I just want to celebrate another day of life." This one is for my daughter, Rachel.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgULM8hxxlFEC84fcmyZOi18-axTVLJKeoTtBkCVauk2A-W_4JSRJozPUTQ_9C3gaCv2WaFwCs59r6467G8NSe0l0J-lwqDl4RHexYq4BT69ibV7molheQ4O2oAmLNPma3VdNNYH-ZBtzU/s1600/IMG_1501.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577367580581826306" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgULM8hxxlFEC84fcmyZOi18-axTVLJKeoTtBkCVauk2A-W_4JSRJozPUTQ_9C3gaCv2WaFwCs59r6467G8NSe0l0J-lwqDl4RHexYq4BT69ibV7molheQ4O2oAmLNPma3VdNNYH-ZBtzU/s320/IMG_1501.JPG" style="float: left; height: 214px; margin: 0px 10px 10px 0px; width: 320px;" /></a><br />
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Rachel is celebrating her LAST DAY OF CHEMO TREATMENT!<br />
Ta Da! Four -four day sessions spread out over two months (after some very rigorous Radiation treatments) and look, she's still smiling - drugged, but smiling.<br />
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When we walked in today with balloons and bagels for Ra Ra, one patient commented: "She lights up the room when she walks in."<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimnku7A_-cN5F_B2MJ3bPHFXZMnciTLJlO1rVY1Kq-9PVCcA2qqvrBgCZotA_h6JsQ8IymkD5uVKD7jF241men7zRA29RLLsrIWlU9aeBD721XIvbhRT7ouEqDUYR8no_UhIgRDsqGWVo/s1600/IMG_2301.JPG"><img alt="" border="0" height="320" id="BLOGGER_PHOTO_ID_5577381607027065538" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimnku7A_-cN5F_B2MJ3bPHFXZMnciTLJlO1rVY1Kq-9PVCcA2qqvrBgCZotA_h6JsQ8IymkD5uVKD7jF241men7zRA29RLLsrIWlU9aeBD721XIvbhRT7ouEqDUYR8no_UhIgRDsqGWVo/s320/IMG_2301.JPG" style="display: block; height: 200px; margin: 0px auto 10px; text-align: center; width: 134px;" width="214" /></a>Here's to RA RA:<br />The Place... <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG6kSTPgEuhyphenhyphen5MCvF8mQT02SNIswutS3pJmcmMXxd83J6eEzjzzvS8uK0K-4LYV5ciyXdQlQq9Dwqo2xsEBtuEvCfzMesPCtiFZ_PBNwF3zjoPcItVSuoj7i0rh8j2RzXelxLANS13Tlc/s1600/IMG_1492.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577372775412558498" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG6kSTPgEuhyphenhyphen5MCvF8mQT02SNIswutS3pJmcmMXxd83J6eEzjzzvS8uK0K-4LYV5ciyXdQlQq9Dwqo2xsEBtuEvCfzMesPCtiFZ_PBNwF3zjoPcItVSuoj7i0rh8j2RzXelxLANS13Tlc/s200/IMG_1492.JPG" style="display: block; height: 134px; margin: 0px auto 10px; text-align: center; width: 200px;" /></a> The Stuff... (called 'RED DEVIL")<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWqmYTiEe0V3yv-Da-kl_tYv7wKabH8_G92rmQgFv2Bh6fTtehfjPdSCTwoZUpiAK8OZhPxDq_jfcnJnS3eI9-yfh0HVaTQcaKHP8tBvlC3AMOho6z-r0atlG2l6VaQi1b3awk8gsl-Fc/s1600/IMG_1475.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577372794235047874" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWqmYTiEe0V3yv-Da-kl_tYv7wKabH8_G92rmQgFv2Bh6fTtehfjPdSCTwoZUpiAK8OZhPxDq_jfcnJnS3eI9-yfh0HVaTQcaKHP8tBvlC3AMOho6z-r0atlG2l6VaQi1b3awk8gsl-Fc/s200/IMG_1475.JPG" style="display: block; height: 134px; margin: 0px auto 10px; text-align: center; width: 200px;" /></a> The Process...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLMZAM4TrhrMP1ff_oGLCP7kp2NX-fnuCpV0utSeYJHNwdy_d8e079FFqJiNJoKDFtxKPXShHMXIQ2WyhyD4BJz-TgCCD_9V6Oflcs990Jrt5wVJ5wpeLyGwWHEspVEMN4XpSqFbTcxmw/s1600/IMG_1468.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577372785574802754" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLMZAM4TrhrMP1ff_oGLCP7kp2NX-fnuCpV0utSeYJHNwdy_d8e079FFqJiNJoKDFtxKPXShHMXIQ2WyhyD4BJz-TgCCD_9V6Oflcs990Jrt5wVJ5wpeLyGwWHEspVEMN4XpSqFbTcxmw/s200/IMG_1468.JPG" style="display: block; height: 134px; margin: 0px auto 10px; text-align: center; width: 200px;" /></a> Letting it do its thing...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOrBGUSZfLMB5kZZDgqYAG4DxXzdIQdYwf92hWmfV6r0TTuzDV_aRU3X9gOM1maAwkzQD8ZG00pYzjZBhRHOZ6ctm4huyPFovKCXe6n7TU_1hJIwjZ1Svb10yHoN3BfcCXZPx-v3alaz8/s1600/IMG_1454.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577372781946297938" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOrBGUSZfLMB5kZZDgqYAG4DxXzdIQdYwf92hWmfV6r0TTuzDV_aRU3X9gOM1maAwkzQD8ZG00pYzjZBhRHOZ6ctm4huyPFovKCXe6n7TU_1hJIwjZ1Svb10yHoN3BfcCXZPx-v3alaz8/s200/IMG_1454.JPG" style="display: block; height: 134px; margin: 0px auto 10px; text-align: center; width: 200px;" /></a>Twins...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgffGqSqnIWdzoRepeNGjRnSvVV9Pqv2Z7vUf6BaQjDBCjX0h8f7tfLZX7Dkpmy-9LNIipX2A6RaNfZEYNkzpe7HqzmrZKuXLswwTBP1OheAHggoI9i6Tz0_VDDDwFXGK5QuykZzBuWUvg/s1600/IMG_1503.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577374866815479426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgffGqSqnIWdzoRepeNGjRnSvVV9Pqv2Z7vUf6BaQjDBCjX0h8f7tfLZX7Dkpmy-9LNIipX2A6RaNfZEYNkzpe7HqzmrZKuXLswwTBP1OheAHggoI9i6Tz0_VDDDwFXGK5QuykZzBuWUvg/s320/IMG_1503.JPG" style="display: block; height: 214px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a> Mimi & RA...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4-EI1QIYn2uEejhGBn91BARJUk2GhyphenhyphenmuDMxXa0RBc4trVI-x76M8u8CfimdOceUr9Cm3iM4le2j4R2bIt8GIC0_gX3NfgZHJyKI7gf0G8RUI6nzr4n21-nKIzrCQf6z1cfABEyrkkbmI/s1600/IMG_1497.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577374869002827698" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4-EI1QIYn2uEejhGBn91BARJUk2GhyphenhyphenmuDMxXa0RBc4trVI-x76M8u8CfimdOceUr9Cm3iM4le2j4R2bIt8GIC0_gX3NfgZHJyKI7gf0G8RUI6nzr4n21-nKIzrCQf6z1cfABEyrkkbmI/s320/IMG_1497.JPG" style="display: block; height: 214px; margin: 0px auto 10px; text-align: center; width: 320px;" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqc04RGm1aCI9D-aygo7v44vr0QlYqdArTYs6OcG2Vg-NBMezpgaO2UX6Bv2vPwXTzoHo0whS_-fSSLqZ8FZmIWVojL_7ODDsHbsxlAgDvKm2Xa1ff5CpnSVIv607h051ipNnzaqytagY/s1600/IMG_2309.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577384194912370386" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqc04RGm1aCI9D-aygo7v44vr0QlYqdArTYs6OcG2Vg-NBMezpgaO2UX6Bv2vPwXTzoHo0whS_-fSSLqZ8FZmIWVojL_7ODDsHbsxlAgDvKm2Xa1ff5CpnSVIv607h051ipNnzaqytagY/s200/IMG_2309.JPG" style="float: right; height: 134px; margin: 0px 0px 10px 10px; width: 200px;" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjegQU1o3Wohokgr-XA0TvjtfXdx8d6_gLNtVPUs2U-6pz6pqgwlydnW_JT3F0aYRY9e0lP1bGCZ48d6Phv9qM7EfeyPfYCx81GtLTr-u19O7spXnV72J-jXMa_r4PX2GwYzHGOEXgkmo/s1600/IMG_2299.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577384194270679074" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjegQU1o3Wohokgr-XA0TvjtfXdx8d6_gLNtVPUs2U-6pz6pqgwlydnW_JT3F0aYRY9e0lP1bGCZ48d6Phv9qM7EfeyPfYCx81GtLTr-u19O7spXnV72J-jXMa_r4PX2GwYzHGOEXgkmo/s200/IMG_2299.JPG" style="float: right; height: 200px; margin: 0px 0px 10px 10px; width: 134px;" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCmRGA2EtRPyN5HEsOP44x385PFwI1M1SSn9Em2U3gjOV5WxzN3MOPgLkGu24bUSivxsdZ3HbzPvSbIfwAzg9ufxqxbOQdZNL0y3Iil7kY6DUhr5I8Uc9REz1XdxMN6LLC9jy8Vm-n-iA/s1600/IMG_2306.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577384187132053922" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCmRGA2EtRPyN5HEsOP44x385PFwI1M1SSn9Em2U3gjOV5WxzN3MOPgLkGu24bUSivxsdZ3HbzPvSbIfwAzg9ufxqxbOQdZNL0y3Iil7kY6DUhr5I8Uc9REz1XdxMN6LLC9jy8Vm-n-iA/s200/IMG_2306.JPG" style="float: right; height: 134px; margin: 0px 0px 10px 10px; width: 200px;" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQo5yvraXBm7VJYpebfuO5Y-0VB3c-f16QoV_PlhT98tbb_jV97EuOfH_KeHJg16Dj7H2wlK77fuLPxhXvqHmKCU25fvYaVOABcV28qe97ZPxDc0Pdf0UvSeJQTgU-fdqmjFVaqITturk/s1600/IMG_2301.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5577384184639209826" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQo5yvraXBm7VJYpebfuO5Y-0VB3c-f16QoV_PlhT98tbb_jV97EuOfH_KeHJg16Dj7H2wlK77fuLPxhXvqHmKCU25fvYaVOABcV28qe97ZPxDc0Pdf0UvSeJQTgU-fdqmjFVaqITturk/s200/IMG_2301.JPG" style="float: right; height: 200px; margin: 0px 0px 10px 10px; width: 134px;" /></a><br /><br />Let's Celebrate!<br /><br /><br /><br /><br /><br /><br /><br /><br />We love you RA! <br />
Bye, Bye, Cancer! Hello, LIFE...and they all lived happily ever after.Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com2tag:blogger.com,1999:blog-5626537130461773288.post-68023185639140301412011-02-13T09:04:00.000-08:002011-10-29T10:18:29.777-07:00It Never Rains in California...Those lyrics and melody echo in my brain: "but girl, don't they warn ya - it pours, man it pours." <br />
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When it rains, it pours...the perfect mental picture of our journey this past month.<br />
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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...<br />
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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). <br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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...<br />
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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. <br />
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And Now, for the rest of the story ..... you'll have to wait until it's written.<br />
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KWKenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com0tag:blogger.com,1999:blog-5626537130461773288.post-32874507464360041882011-01-21T09:05:00.000-08:002011-10-29T10:44:34.622-07:00Vida LaRue Lincoln - a little angel!I'm beginning to learn (always the hard way) what's really important in life... and it's not about me: it's about US! Watch this video of my daughter, Rachel, giving birth to Vida LaRue and I think you'll understand. LIFE is precious.<br />
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One more reason to move to Southern California - to be with family.Kenny Waynehttp://www.blogger.com/profile/00866408435196866301noreply@blogger.com2