Friday, March 31, 2017

Stage 1.2






Yes this is Stage 1.2 because this is my second time around for the 3-part DBS

procedure. For those of you that just joined my saga and don't want to go to the beginning

of the story, I'll give you the cliff notes, but I urge you to go back and read from the

beginning. Then follow through with a mouse or finger move (depending on your device

of preference) to my daughter's blog thechroniccaterpillar.com. (which I mentioned in my

previous post). I've already receive confirmation from several of you that Mandy is a

much better writer than dear old dad.You don't have to abuse me though! Lol

Review 

Diagnosed December 2003. Thought I could beat this disease by myself with exercise

and nutrition. That helped, but I figured out that I'm not in control here. God has a plan

for me and I need to have faith in him that all will work out.

I've been on the PD scene for over 14 years and have taken most mainstream drugs to

control the symptoms. That's all just control, since there is no cure. Some I could tolerate,

some I couldn't. After the first 10 years of being inconvenienced, I found the

"honeymoon" to be over and started to have struggles in daily life, such as drugs wearing

off, hard to get "on", rigidity , sudden offs, etc. If you google Parkinson Disease

symptoms you'll get a list of motor and non motor symptoms and chances are I've had

about all of them at one time or another. Symptoms come and go, and affect all of us

differently. That's why they call it the designer disease, no two people are alike in disease

symptoms and progression. So I find myself down the one way road having used up

most pharmacology options and I'm only 57 years old. In PD years I'm about 90. Don't

know about you, but I had planned on being around a while to see grandkids etc. Still got

some living to do. I had a doctor mention DBS to me a couple years ago and I was

like "no way am I going to let someone drill holes in my skull and run wires into my

brain, while I'm awake even." I remember the doctor at the Mayo Clinic, Dr Rubino, who

after two years of tests, and doctor's blind eye to the Parkinson's, told me I had

Parkinson's and that since I was young, 42 at the time, to consider DBS down the road. I

find myself down that road.! I decided to go to Vanderbilt Medical Center to see what

they'd say. After testing to see if I was a good candidate for DBS, they

deemed me a very good candidate and put me on the schedule. I complete the three stage

procedure.
   
                                                      I. Bone marker 
                                                     II.Lead insertion 
                                                    III.Nero Transmitter insertion 

I completed the entire procedure at the end of 2016, and go to have the device turned on

after healing for a month, just to find out my body is rejecting the hardware inserted in

my body, I have an infection! I found myself in surgery several hours later having the

stuff removed. After five days in the hospital I was sent home with a picc line in my arm

and instructions to self-infuse for three weeks. Two rounds of antibiotics daily. That

wrung my body out! What's next? Have my options changed? Has a cure come along in

the last three months? Something to slow the progression?

Why hell no! That takes me to yesterday, Tuesday, March 28, 2017. Scheduled for 10 am

Stage I. I'm up at 0430, (that's way early for you non-military types) and drive to Vandy.

They are very good at what they do at Vandy. It's an industrial body repair factory. The

procedures are the same as last time. Checkin, register, get the ID bracelet to become a

member of the club, and wait. You don't wait long. Inefficient factories don't stay around

long in this day and time. I go to bed number two, put my gown on and get under the

sheet. The surgical team comes by two at a time to introduce themselves.

I had the same anesthesiologist as last time. He kept saying "you look so familiar". Say

bye to your significant other and off you go to the 48 degree operating room. You can

pretty much hang meat in these rooms. I have a student anesthesiologist trying to get stuff

set up and her instructor is grilling her with questions at the same time. I'm thinking "let

her focus!" The instructor says since this patient is skinny he'll only need this much

sleeping juice. I've never been called skinny in my life. What's up with that? She gets her

act together and I breathe some oxygen for about 20 seconds, then I feel the familiar

surge of sleeping juice (my name for it) surging into my veins from my IV and I say

goodnight. The next thing I remember is the nurse in recovery is calling my name. Leave

me alone, all I want to do is sleep. They want you out of that bed because someone is

right behind you, to be sure. Don't get me wrong, if you need to stay there because of a

problem, you'll be taken very good care of. I was able to suck down a couple little cups

of apple juice, got dressed, the nurse said I could walk out or be wheeled. I had just had

my PD meds just a few minutes before and could barely walk, so I took the chair. The

free Valet is a great service that Vandy offers. They must pay those guys well, because

they say no tips. They're fast, friendly, and free! What a deal! I digress! The car is 

brought up, I slide in the passenger seat for the three hours and sixteen minutes ride to

the ridge. Stage 1.2 complete.

I felt pretty good till later in the evening. I had a ringing in my ears that I didn't pay much

attention to while at Vandy, but it was disturbing enough for me now to email the

surgeon's nurse. It was like the morning after a Van Halen concert by the speakers kind of

ring/roaring. A muffled ringing! They responded quickly with a "we don't know, we

didn't go intracranial, maybe due to the anesthesia, give it some time to see if it

improves." I'm glad to report I think it's going away. Also last night as I was lying in bed,

I felt a little trickle of something on my forehead. I got up to check and my left front

screw had started bleeding just a little. My full-time teacher, part-time nurse for a wife

went into action with gloves, sterile wipes, and ointment to save the day. You can see in

the pic they both are a little puffy. Other than those two little things all systems are go

and just waiting for the next round of fun to come. Stage II! I can hardly wait.































































































































Tuesday, March 28, 2017

Round 2 *Ding!Ding!Ding!

That's correct, I'm back in this fight, and somehow I'm more fired up than ever. Maybe the good lord

has heard all your prayers and has given me an extra shot of confidence and courage. I must admit I

had been dreading going through the procedure again till just the last few days. I've been encouraged

by some improvements in the gym and, just an overall improvement in the way I feel. Swallowing

had been a problem but it's cut me a little slack the last few days. I messed my

lower back up and got something in my eye from weed eating. (Yes,I had glasses on) I get a break

 from the PD and, create other ills. Lol Nothing a trip to the chiropractor and massage envy can't take

care of. The grass is all flushed from the eyeballs as well! Getting old sucks!



I looked way back to Nov 2016, when I started this quest and thought about where I've been, and

where I'm  going? It brought me down to think of all that time wasted so I've stopped reflecting! 

 "It is what it is!" as they say! I'm trying to look forward to the future and the good things ahead.

I know it's going to get worse again before it gets better. Surgery just seems to take it out of you.

What I hate more than anything, is my support team having to take up the slack at home, and keep me

 out of trouble. I feel this time they're going to put me in a sterile bubble boy suit and not let me out

till I'm all healed!

I'll try not to duplicate previous posts and bore you even more. My focus will be on noting any

differences in the way I feel mentally and physically.




I've had other stuff on my mind for a while that supersedes all my own woes that I'm going to share

with the world wide web in hopes that there is an answer out there. I've been given permission from

my daughter Amanda (we call her Mandy) to share her story. To my friends who ask how my girls are

doing, I must apologize for not telling the whole truth. I would usually just say "they're doing good,

Mandy is married living in Denver, and Morgan is in grad school at UT" and leave it at that.

The truth is Mandy has been sick for about 1.5 years, and no one has made a good diagnosis.



She's a beautiful young 24 year old that used to have boundless amounts of energy and strength.

She could do more chin ups in middle school than any boy inn her class. She trained for hours after 

school for competitive gymnastics.


She and her sister pulled and pushed me to the summit of Mt. Elbert, the highest point in Colorado at

14400 feet less than two years ago.



That was then. Now on some days she doesn't feel like getting off her couch. She's has a low grade

fever almost every day. Fatigue,body aches and pain are present as well. I don't think I can cover 

 her symptoms adequately, I'll let her do that. There has been a lot of tests run looking for the obvious

but it's apparent now that this illness isn't plain and simple. Put yourself in my shoes...you have a

chronically ill daughter that's 1400 miles away, and you can't help her get better. You can support her ,
and love her, but you can't kiss her boo-boos and make everything alright like fathers do.


What can you do to help? Well, one of her doctors told her the more people that sees her problem

the better the chances of figuring out what's wrong. I'm trying to increase those odds by

 spreading her story. I'm going to get back to a condition that I want to do another fourteener , and I

need both my hiking partners. 
I have this blog on a couple different forums that some intelligent  people belong to, (I'm lucky there 

wasn't a test to belong) so I'm asking you to take a look at Mandy's  blog and get to know her and her


symptoms and just maybe someone can help a young woman with a bright fulfilling life ahead to 

reach her goal of normal health.




Don't worry, she is a very good writer, much better than her father, so her blog is the real deal. I

must admit I cried aloud for 10 minutes after I read it. Give it a look, you might shed a tear as well.



You can find her at thechroniccaterpillar.com the name alone should entice you.