Another surgery?!

The title is correct, I'm 10 days post op right shoulder replacement redo. I probably didn't post much

or anything about my failed shoulder replacement 23 month ago. The original plan was to have my

bad shoulder replaced and working properly before DBS. That would have been great, but I'm not

calling the shots.The shoulder was from an injury 37 years ago in the weight room. It probably was a

small tear in the rotater cuff that healed on its own. Arthritis built up in the joint over the years and it

would flare up at times, and it finally got in the way trying to battle the PD. Remember exercise is

vital in the fight with PD. Getting back into the game required a successful DBS and shoulder

replacement. I don't really like having to go under the knife multiple times for success, but if I'm

going to have any quality of life my remaining days, I had to do it! On 8-10-17 I had my 10th surgery

in 2 years. So far, so good, with the shoulder. I'll know more this week after the first post op doctor

visit. The DBS is going good. I've reduced the amount of meds I have to take significantly,most

symptoms are gone or reduced. My biggest struggle has been with my voice and swallowing. It's

been over 3 months of  fine tuning the neurotransmitter to get my voice back over a whisper. I was

 aware of this side effect and accepted the possibility, praying we could program a better outcome if

needed. That's where I'm at currently. Arm in a sling, doing therpy at home, healing once again!

Done Deal

Sorry for the format issues I'm tired of messing with it

I find myself apologizing for being a couple days behind in the blog, but I take that back.

I did go to Vanderbilt on Friday, and I'm happy to report no infection.

I  was able to get my implanted Neurotransmitter turned on and programmed. I've been real tired ,and 

been trying to catch up on my sleep, that's  why I take it back . I admit I was a little apprehensive 

  given my history. The seam on the left side of my head is a little sore, but it's been cut into

no less than 4 times. Where do you begin a blog like this? I mean, I'll update maybe once a year for

my new friends in the DBS world to compare notes, but I don't have intentions to bore the rest of you

with my health issues.



I'd  say some gratitude is a good place to start.

I want to thank anyone who paused to think about me or put me in their prayers. I think prayers can

make a difference, if it's for the doctors and nurses that hold your life in their hands or for you
.
directly. I think you have to have faith,we don't have all of the answers,we just think we do.


All the doctors thought I have healed up nicely. I'm on and programmed, but after 8 hours


my voice got garbled, sorta tongue tied. I called the doc and told her whats going on,


and she had me turn the left side down a increment and wait, if no change take it down another

and go to the other side. It will take time and patience  to get this thing right. If we  can't get rid of


the voice problem I can live with it. Sometimes in life you have to pick your battles .

STAGE III REDO

I am happy to say this past Monday I had another

successful Stage III surgery. I say this with extreme

caution because of what happened last time with an

infection looming just under my skin, waiting to come

out. Stage II and III went just like last time, but I seemed

to take more of it in. I didn’t remember so much of my

surroundings the first time, and I acted like I was still

under the happy juice for a good while the second time around. When I

came around in recovery after my phase 2 surgery wanting a pizza,  I did everything I could think of to get one. The poor

girl transporting me didn’t know what to think. I tried

to get her to stop on the second floor at the cafeteria. I

even offered to buy lunch for everyone! They were happy to get me to a room I’m sure. I

continued to have fun though. My room nurse came in

at a shift change to ask the usual questions, you

know, "What’s your pain level? Where does it hurt?" Well, I

answered about a 2 or so and then busted out laughing

as I pointed to the baseball stitches across my head, as if to say "Where do you THINK it hurts?!". It

just struck me as funny, and I cried I was laughing so

hard. The nurse finally got it and cracked a smile.

My current status  has me at home taking it easy, waiting for the turn on day. To

refresh your memory, that was the day they found the infection and removed all the hardware last time.

That’s not going to happen this time. I feel better overall. One concerning side-effect has

been some confusion. Docs say that it’s not uncommon to experience some

confusion during fist couple weeks after surgery. We’re keeping an eye on that

for certain. With that, I’ll fade back into cyber space while I heal up until I have any more news.

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.

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.

Scheduled

I don't have much to blog about, but I've been receiving inquiries about my status, so I'll share what I know in the continuing saga.
Yesterday, Thursday I went to Vanderbilt and seen Dr Koons,the neurologist that works with me while I'm at Vandy, and the neurosurgeon Dr Konrad.
Let me back up a week. Last Tuesday I wake up with a rash that was pretty much all over my back and legs. I didn't have much doubt that it was finally a reaction to the antibiotics. I talked to Infectious Disease at Vanderbilt and told them what was going on and I've taken my last round of antibiotics. I had an appointment with them in two days anyway. My body had all it could take of the strong medicine. I felt rung out! Friday came and I got rid of that Picc line and had blood drawn for more lab work. Now, moving to this week again. Dr Konrad told me that all my labs looked good, but one test that shows inflammation was just a little high. He couldn't believe that any infection could survive the 40 days of pounding antibiotics. I picked up a dry heaving cough that's been going around, and we figured the test reacted to that. To be certain in two weeks I'll redo that test and send it to Dr Konrad. He's keeping me on his schedule anticipating all will be normal. I'd got a mixed message on the risks of infection happening again would be higher on subsequent surgeries. He assured me the risks were no greater. I showed him two sunken spots on my scull, and he said when the leads are reinserted, he fills the holes. I guess it's like repairing drywall or a fender on a car.
Lastly, he cleared me to do whatever I feel up to, noting that I'm probably still feeling the antibiotics.
I agreed! More to come.

Fighting Infection

I've had some folks contact me inquiring if I'm alright and wondering if the DBS blog will continue. First, thanks for being concerned enough about me to inquire, and second, the blog will continue. Just haven't had much to report. My status currently is healing!  I'm  taking 2 antibiotics every 12 hrs. One by oral, and one by Picc line. I plan my day around that. It takes 1.5 hrs to do a cycle, so if you do it at 11 am, you have to do the next one at 11 pm, and finish at 1230 am. The possible side effects from drugs are a couple pages long. Lab work shows my kidneys are still taking the beating I'm giving them for now, don't see them holding out a lot longer. I'm going to the gym and doing some machines and just a little spinning on the bike 🚴. Trying not to sweat because of the fear of some bad bacteria forming around the Picc line and forcing me to stop the therapy. I'm ready to get rid of it, I use 10 foot of Saran Wrap for waterproofing just to take a shower. People have asked me if I'll have the procedure again? As I run my hand over my scared head I sometimes wonder if it will be worth it, but for now I'm on the schedule for the end of March, so I've got about 1.5 months to get stronger before the repeat. It's 1230 am and my infusion is done for tonight. Tomorrow I get the Picc line dressing changed and lab work done. It will be an exciting day,maybe not, but I'll still be grateful for it. Write more later!

Adjusting My Attitude

It's been a few days since I've been on the blog. I thought I should layoff after I read my last post because, I was sounding like a whiner. I prefer to not have that label. I prefer gratitude  guy, someone that's extremely grateful for all the blessings I've received in my life. I watched 20/20 last night, and part of the show was low incomes in the country. In one segment this man was commuting 80 miles one way to go to work. He started by bicycle at 5:30 am and had multiple bus connections. I told Donna if we had to do that, we'd probably cry and moan each and everyday. He was just wanting to be a good father and husband and provide for his family.There was a bunch of political issues with the show that I won't touch in this blog! Back on track, I'm grateful they found the infection when they did.

In hospital long enough to start a beard!

In the above picture I'm pissed, disappointed, scared, and tired. I gave myself a good talking to. I think I'm alright now. I need to get rid of this infection, and heal up so I can get some exercise in. No exercise at all is killing me a little each day in my opinion.

Before the hardware was removed I had a CT scan to map the exact location of the leads. I was told with that data and previous 3D model that they could pin point the exact location again without my help. I'm hoping that means they can knock me out for the reinsertion of the hardware.

I've been home for five days taking high powered antibiotics learning about some side effects the hard way. For example on the way home the first night we made a stop at the Dollar General. I get out of the car and go in, and make it to the bread isle before feeling fuzzy, grey and going down to my knees. I bounce up, no damage,although a little stunned, and go sit in the car. The next day I confirm by email that the drugs was probably the cause. I have to have blood drawn weekly for kidney function tests and have my Picc line dressing changed. What a hassle! There I go, whining again.

Had some visitors this weekend. My lifelong friend Beverly Johnson Watson, her mother and loyal companion Hedi came by the house for a quick visit. Hedi is the lighter Shepard in the back. My Bellla up front.

Today a flying buddy/boss from the Air Force, John (Box) Elder with his lovely bride came by for a few hours. It was good to see everyone! Social media can only do so much you know!

Terrible Day

---

Today I had a little setback. I found out I have an infection. That's nothing to take lightly.I had complained about a stiff neck and the dr was observing me. I had sent him a half dozen pics. A small spot on my head they pressed on, and it opened up.Then he pressed on the side of my head, and it was quite tender. The odd thing is when he pressed on the Neurotransmitter,it wasn't sore, and it had quite a bit of infection on it. They drained blood from me to use with cultures, to narrow the antibiotic down.When I come home, I'll be on a pic line to finish the course of treatment, over the next couple months.Not helping my cause!

What words do you use to describe how you feel when they've just told you the medal pieces we've worked to put in you the last few weeks have got to be removed? Devastating comes to mind. January 5th was supposed to be a happy day,the first day to the rest of my life, a new beginning,starting over. Do you see how vulnerable we are in this life? My day turned to shit in less than 30 secs with life decisions to be made with it. I thought how unfair is this. Remember that 2 to 3% I told you about. Well, lucky me. My head looks like a baseball in spring training.(you know how it's clean with bright red stiches.

As I sit in Vanderbilt for my fourth night, taking antibiotics, I want to go home! All my vitals are good. I understand why I'm here,waiting on the cultures to grow so we know which one to attack when we go home. I just want to go home and morn this,were we can move on. Notice I said "we". I haven't given enough credit to Donna. She's across the room with me sleeping on a hard fold out couch. She's been with me from the beginning,and I wouldn't have lived this long without her and the girls love,and support. My girls are the greatest, both have graduated from UT. Amanda has a degree in business with a minor in Spanish, that she acquired from study abroad program. Morgan is staying on at UT for more punishment in grad school of speech therapy.

Hopefully a better week!