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!
Parkinson's and DBS
Sunday, August 20, 2017
Tuesday, May 16, 2017
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 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 .
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 .
Monday, April 17, 2017
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.
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
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.
Friday, February 24, 2017
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.
Monday, February 6, 2017
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!
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