Song fellow/Steve,
You write well. I love your choice of descriptive words of the area where you lived. It was almost like I was there.

i was born in Kentucky, moved a lot through the states (my dad was a welder on gas lines), and since high school, I have lived in beautiful East Tennessee. I was formerly an elementary principal when I was dx with PD. I was able to work almost 4 years post-diagnosis. I kept an on-line journal for almost 5 years. There truly is a need - a desire to tell the world about PD. and it's also very therapeutic to write about what you know and don't know about this disease, how you feel about what it does or doesn't do to us, and just to share day-to-day experiences.

If your sharing of your journal was to reaffirm your need to write, I say absolutely. You write beautifully, and now you have shared a little piece of your heart. Keep writing. This isn't the best venue for journaling because of the way the titles and comments move around with dates. Maybe someone could suggest how it can be shared with more.

Keep telling your story!
Peggy

Amen to what Peggy just said....I wanted to write something just like that, but did not have the words.....Peggy is a talented writer too and yes your writing touches hearts.....I don't cry very often, but your reminiscing about the old cabin and relatives made me cry. Sometimes it feels good to cry....cleansing somehow. God Bless you...KEEP WRITING.

Peggy and Aunt Bean:

Thank you so much for your kind words. They brought a much needed smile to my face this morning!

Steve

A smile on ones face makes any effort worth its time.
Peg.

I think I have gotten more morning smiles from my friends here (that I have never met.)...I thank Reverett for the many he has supplied me with too. I am still working on my HOBO clown "Pockets" and hope "He" will bring smiles to many. I will be wearing our Northeast TN Parkinson's Support Group patch on my back. They are my second family here and I love them dearly! I hope to have "Pockets" done by next week and ready to go out to farmers market/ parades/ festivals or wherever.....to spread smiles...and PD awareness.

My daughter's wedding was this weekend. She was LOVELY.

I thought you might like to read my "father of the bride" comments.

======

The beautiful lady standing here before me in this lovely wedding gown is my daughter.

I've Watched her grow from a child into a wonderful,loving mother. It fills me with a feeling of pride that is impossible to describe.

All through her life she has brought joy to her mother and I. Although not every day has been perfect, the love I feel for her has been.

Today she has sealed her future with a wonderful young man. I see a love and sparkle in her eyes beyond anything I have seen before. She and Rob complete each other.

Please join me today in wishing AJ and Rob every happiness possible and a long and joyful life together as husband and wife.

Dad

August 25, 2013

I only remember a few things from my early childhood. They were all related to some event that particularly stood out.

I was born in Indiana on April 2, 1950. To be more exact, I was born on the first of two streets that bordered the town but were never incorporated into the city limits. We were too poor, I guess.

My father built our house himself. I remember the picture window in the front and the large garage that he built out back to support the additional income he earned working on cars and trucks. He worked multiple jobs. He didn't have much time to spend with his 3 sons but we knew he loved us.

I was surprised one day when my mother came running into the house yelling that the garage was on fire. My two younger brothers had been playing with matches and had lit the 55 gallon drum that was filled with oily rags. The flames were touching the rafters. When the fire truck arrived everyone was surprised to find that I had put out the fire by putting the lid on the drum.

It was all very exciting.

One problem I had to deal was that I was sensitive to electric fields. I would get severe headaches. It was almost impossible for me to go into the TV department of any store without having to deal with a loud buzzing sensation in my head.

We owned the first television set on our street. My favorite Saturday morning show was "Creature Features". One Saturday my mother surprised me by coming into the room and turning off the TV just as some poorly animated dinosaur was getting ready to destroy a barn. She asked me what the buzzing sound was. I started to say "the TV" before I realized that it was off. Instead, I answered "maybe it's the Chrysler forge plant" but she said no. It was then that we both looked out the picture window and saw at least five bright disc-shaped objects way up in the sky disappear at a dizzying speed in the direction of Indianapolis. There were no clouds. It was a beautiful day.

That was when I learned that my mother was also sensitive to electric fields.

I entered a tv jingle contest and eventually received a letter through the mail stating that I was tied for first place. The item I was competing for was a really cool 10-speed bicycle. That seemed like quite a big deal to me.

My father took a job in Florida but we could only take what would fit in the trunk of the car. All of our furniture and other belongings were sold at public auction. It was a heartbreak leaving our home and friends but we accepted what came our way.

Eventually we heard my jingle as a TV commercial. I guess I had won the contest. I never received the bike. It probably got stolen in Indiana.

Oh, if you're interested my jingle was "Koolaid, Koolaid tastes great. Wish I had some. Can't wait."

On November 22, 1963 I was looking out of my uncle's apartment window in Orlando, Florida trying to make my fuzzy brain neurons explain to me what the reason was for having a girlfriend. It seems that I was lacking a bit of information on the birds and the bees. It was then that I heard the announcement on the television that President Kennedy had been shot. It made me feel a bit ashamed about where my mind had been just a few seconds before.

These are the things that I will always remember.

Steve

The Path Ahead
March 15,2014

One of the things I miss is being part of a focused team effort designed to solve specific problems. I miss the technical interaction. Outside of my family those were some of the best days of my life. It is more fun than most people can imagine. Unfortunately, though, I get bored too quickly with small talk. It's the scientist in me.

I was diagnosed as having Parkinson's Disease in June 2005. At the time, my neurologist told me that the medical industry lacked a diagnostic and prognostic tool for the disease. Existing tests weren't experimentally derived. They were based upon the doctor's judgment of a patient's gait, the way they talked, the amount of tremor, etc. He then assigned a numerical rating of my condition by referring to a standardized scale. It's kind of embarrassing.

This situation has changed very little over the years.

I surprised the doctor at the time of of my diagnosis by laughing when he gave me the very bad news that I had succumbed to such a terrible disease. He looked so discouraged and horrified. He obviously felt that there was only misery remaining to me for the remainder of my life. I would have to take pills that would eventually lose their effectiveness until one day I would be confined to a wheelchair unable to move a finger or take care of myself until the day I died.

To me this was NOT an acceptable option!

Please understand that I have never truly failed at solving any real problems during my life. That's why I wasn't affected the way he anticipated. It's not that I've never made any mistakes. It's just that mistakes are an expected and natural outcome of the scientific process. I couldn't accept for even a moment that I would fail.

I'm certainly not a doctor so I decided to approach the problem like a computer scientist.

The first thing I did was to buy some medical books. Then I tried to imagine how the human nervous system might work if it was actually a computer.

I started with a picture of the spinal cord and was surprised to discover that it really looks more like a worm than anything else. The brainstem looks like an evolutionary enhancement as does the brain. As a matter of fact, all of our computationally intensive stuff is located in the head. Our vision, speech, hearing, smell and taste centers are all placed there and then tied directly into the brain. Wow, what if the brain really developed as support for our senses?

The next obvious question was whether there is any animal that could function without a brain. Carefully avoiding the obvious political jokes, I remembered seeing chickens walk, fly and retain perfect balance after their heads were cut off. How did they do that? Isn't that impossible?

The simple answer is that chickens do not seem to need a brain for locomotion. The learned patterns for walking, flying, clucking, etc must be stored somewhere else. But where and how are they accessed if the head is removed? How could I keep my brainstem from interfering if I wanted to learn to walk again without my brain getting in the way?

I needed to disrupt my brainstem signal by forcing it to concentrate on something else.

Well, nothing draws an animal's complete attention like a laser light beam on a wall or floor.

I quickly purchased and often use a laser pointer whenever my Parkinson's symptoms cause me trouble. It seems to increase my capabilities by about 25%.

I use it to walk, get out of chairs, etc. It has proven to be a miracle tool for me. My laser pointer is my way of allowing my body to access hidden pathways in my nervous system but it isn't a complete solution.

How does it work? Honestly, I haven't got a clue but I assure you that it does.

It was with this information that I eventually was able to develop the 3LT test for Parkinson's Disease. It has been a great help to me as I have wrestled with this.

Unfortunately, the disease recently advanced to the point where the medication was no longer working. I needed another option.

For quite a while my neurologist has been recommending something called Deep Brain Stimulation. It's basically a way of applying a signal to the brainstem to disrupt the faulty signals caused by Parkinson's Disease. No one really knows how it works but I suspect its function is similar to my laser pointer.

I agreed to the procedure even though I was aware that it might do nothing to address my fatigue issues. (There are many incompetent neurologists who insist that fatigue is not a symptom of Parkinson's. I assure you that they are absolutely wrong.)

There are a few prerequisites to having DBS surgery. They include a full health workup, a psychological evaluation, an MRI, X-rays, an electrocardiogram, a CT scan and health insurance. They have learned to screen the candidates very carefully.

My surgery was done at Beaumont Hospital in Royal Oak, Michigan. The staff and facilities there are superb.

The surgery is done in 2 visits.

First, the electrodes are implanted in the brain. Then just a week or so later, the Medtronic neurostimulator is installed in your chest. Both sides of my body exhibit symptoms so two units were installed.

On January 30th my wife and I arrived at the hospital early in the morning for the first surgery.

Beaumont has some features allowing caregivers to track a patient's progress during the day. That helped to reduce my wife's stress level by quite a bit. The only real problem she encountered was when they discovered that they had misplaced my records and couldn't proceed right away with the surgery. My wife was concerned about what was taking so long but they were eventually located and the surgery went on as planned.

After sticking an IV in my left arm and attaching an automatic blood pressure cuff they had me sit in a chair and proceeded to attach a frame to my head. This was to keep me motionless during surgery. The frame was quite literally SCREWED to my head.

I've learned to carefully watch the eyes of anyone in the room who is not at the time involved in my care. It helps me to gauge the severity of my situation.

One of the staff was literally flinching. When they injected the Lidocaine into my forehead it hurt like a hornet sting. My wife was present for this part of the operation and I could hear her nervously shifting around behind me. This was truly the most painful part of the operation.

Except for a rather fun ride around the hospital on a gurney my next memory was when they brought me out from under the anesthetic. They needed to check the connections to the electrodes they had just installed in my brain.

I don't remember much but they were purposely inducing dyskinesia! My entire body was jerking around. This seemed to go on forever but they told me that the results looked really good and that I could expect good things when they were finished.

Except for losing control of my bladder after I returned from surgery (much to the chagrin of a very busy nurse) and the reality of trying to sleep with metal staples in my head, there is not much else to say about the first surgery.

The second surgery was required in order to install the two Medtronic neurostimulators in my chest. It was on February 6th in the afternoon.

It is interesting that the only thing I remember about this second surgery was that I didn't stay overnight. They also seemed to be in a really big hurry to get me out the door. A couple of hours more would have been nice. I was groggy all the way home.

I was allowed to keep my laser pointer with me at all times during my stay at the hospital. It created quite a stir.

On February 19th my wife drove me to the surgeon's office to have the staples in my head removed. This procedure is a bit unpleasant.

I was concerned about my left ear being numb. It seems that no one had noticed that my ear was folded unnaturally until late into surgery. The nurse who removed the staples explained that feeling would eventually return. It did.

On the morning of March 11th I had my first visit with my neurologist and the Medtronics engineer. The purpose was to turn on the neurostimulators and to confirm their operation.

My wife and I spent about 2 hours there while they changed certain settings using their remote control and noted the effect on my symptoms. Most of the time was spent trying to reduce my tremor.

I'll admit to a bit of a surprise when my left eye was suddenly pulled as if by magic to the left. This caused me to say ” Holy Sh&*t ”. I received quite a few shocked looks after that one. My facial muscles were taking quite a beating.

My wife noticed during a break that my mouth was pulled slightly to the right. That was an indicator that something was wrong but at the time no one thought much about it.

We learned later that the gain was too high on the neurostimulator.

I've been taking a drug called Sinemet 25-250. The levodopa that it contains is absorbed by the lower bowel and later converted into the dopamine that my system is no longer able to produce. I've been taking 7.5 tablets a day (7.5 X 250 mg = 1875 mg of levodopa).

Just before we left his office, my neurologist asked that I take half a tablet of my medication to make sure that everything was fine.

I took half a tablet while I was in his office. He watched me for a few minutes then sent us on our way.

The results were awful. During the trip home the full force of the Sinemet took effect and I looked and felt like I was experiencing severe drug withdrawal. My wife said it was if I was trying to crawl out of my skin. After we finally got home I managed to make it to the bedroom where I simply collapsed.

I did get a nice surprise while lying on my back. It caused the worst of the symptoms to almost totally disappear. I probably have my inner ear to thank for that.

God bless that organ.

My wife set up an emergency meeting with my neurologist for the next day. He asked that I take a quarter of a Sinemet tablet before I arrived at his office.

What happened was nearly the same as the day before at my house. I was bent almost double when I arrived at his office.

He reduced the gain settings on the neurostimulators. He also apologized and said that he had meant for me to take half of a Sinemet 25-100 tablet.

I've learned through trial and error that I can take a whole tablet of the Sinemet 25-100. I'm still taking 6 tablets a day (6 X 100 mg = 600 mg of levodopa). But that's 600 mg of levodopa instead of 1875 mg. That's only 32% of what I was taking before.

He said he'll make further adjustments over the next 6 months. I can only imagine how I'll feel by then.

Meanwhile, there's a few issues with the timing of my medication but I now walk with only a small hint of Parkinson's and my speech is nearly normal.

I have discovered that I can once again play the guitar when I'm feeling good. I do, however,need to develop finger tip callouses again.

So the big question is “was it worth it?”.

“YES!”

Congrats on your successful DBS.

Would you be happy to program the stimulator yourself?

John

Not really. It's complicated and I could easily drive myself into a seizure by doing that I think. It's much safer having other people close by.