Deep Brain Stimulation

The following was written by my friend Ernie who had DBS surgery in 2010 at the age of 60. Deep Brain Stimulation is a neurosurgical procedure introduced in 1987, and approved by the FDA for PD in 2002, involving the implantation of a medical device called a neurostimulator (often referred to as a 'brain pacemaker'), which sends electrical impulses, through implanted electrodes, to specific parts of the brain. DBS does not cure PD but it can help manage symptoms and improve quality of life.

Ernie’s DBS Story

Yikes!  He’s going to stick two electrodes in my brain!  Why did I agree to have DBS—this deep brain stimulation surgery?

Sinemet was wearing off quicker despite dosage increases to over 2000 mgs/day. Further increase is not recommended. Parkinson Disease in the driver seat meant more hours of tremors, rigidity, and off-balance careening. My neurologist suggests DBS. I see a neurosurgeon who is reputedly one of the best.

DBS helps control tremor, dyskinesia, and dystonia. The usual improvement is 40%, but the neurosurgeon says I can expect 70% improvement. 70% improvement! Wow! I was starting to get a good feeling about DBS.

The neurosurgeon asks about concerns. Doc, I’m bald. Friends who had DBS have scars that look like their surgeons had forgotten to replace their divots. The neurosurgeon says that he has gotten really good at filling the insertion sites. He describes at great length his technique. I ask him if he could glaze my windows!

On the day of the surgery I felt confident until I saw the medieval torture device that my head would be locked into for the next six hours.  Fortunately I was asleep when they put my head in the cage and drilled the holes in my skull. I was awakened in the operating room. The brain has no pain receptors. Feeling no pain, I was ready!

The OR was filled with people. One neurologist sat near me. She manipulated my arms and legs to trigger neurons to fire. The torture cage limited my field of vision. All I could see was her ear adorned by a loop earring. She explained what was going on. Doctors operated computers that amplified the sounds of my neurons firing and showed a 3-D image of my brain.  A neurosurgeon inserted the electrode. The head neurosurgeon  was like an orchestra conductor. He watched the 3-D brain image and listened for the burst of sound each neuron made as it was engaged by the electrode. He would call out to the doctor moving my limbs to “bend his left foot more to the right” or “lift his right leg”. He would call out to the neurosurgeon inserting the electrode “down .02 millimeters”, or “up .01 millimeters”. When the cacophony of neurons sounded just right, the doctors would cheer. The electrode was in the right place. Neurons in different regions of the brain have different sounds.  The sounds tell where the electrodes are. This procedure was repeated in the other hemisphere of my brain.

For the rest of the operation, I was asleep again. The surgical electrodes were replaced with the DBS electrodes. Wires were run subcutaneously from these electrodes to a box placed below my right collar bone. The box contains batteries, a programmable microchip and an antenna. The antenna is plugged into a device that can turn the power on or off and program the electrodes. The doctors have the master programming device. Patients have a device that can turn the power on or off, change programs and change voltage levels. In two weeks the electrodes will be activated.

Post-op. Awake for most of the operation, I did not have the usual anesthesia hang-over. I was ready to have some fun with unsuspecting family and physicians. I was planning not to recognize my wife when she came in, but she walked right passed me! I had to call her back. Ernie, you’re supposed to be a gorked-out zombie!

One of the surgeons and more family arrived. The surgeon asked me questions. What city are we in? Chicago! Who is the president? Truman!  What day is it? I look at him dazed and confused. The doctor looks at me confused. In unison my family says, “Ernie, stop fooling around!” “Okay, Nixon is president.”

Two weeks pass. I anxiously wait for the electrodes to be turned on.  Without medication, I can barely stand and walking is nearly impossible.  The electrodes are programmed and activated. My mobility is checked again. Still without medication, I get up from my chair and glide up and down the hallway like Fred Astaire.  It’s a miracle!

Five years later. DBS still helps to control PD symptoms but DBS is not a cure. Six months after surgery, PD began to reassert itself. Symptoms started coming back. Dosages of Sinemet that had been lowered have gradually increased to pre-surgery levels but I was able to stop taking one med and my physical motor symptoms are not as bad. Do I have regrets about DBS?  No!

Getting By With Parkinson's

As my body shrinks and my abilities diminish my spirit grows stronger. Ok, so there is no cure and PD is
a progressive disease. It is going to get worse. What can I do? I’ve come up with some things.

1. Talk to other PWP. We are our own best source of information and support. PD affects each of us differently and the meds affect each of us differently. I learned more about how to deal with PD from other PWP then I did from doctors or the web. 
2. Advocate for yourself. Be an active participant in your treatment. Let your doctor know what works and what doesn’t. I was told to take four Mirapex a day but I only need and take one. Many PWP complain about their doctors and the medical care they receive. Demand a comprehensive treatment plan not just meds and a yearly follow up. Doctors can’t help you if you don’t talk to them.
3. Be as physically active and socially and intellectually engaged as possible. Current research believes that new neural paths can be formed and exercise is the best way to do so. Studies show dance to be a particularly effective form of exercise to counteract the effects of PD. Dancers train for years to be able to perform complex and challenging movements. PWP need to exercise just a little every day to help offset the effects of the disease. It is simple, exercise eases the PD and dance makes me feel good.
4. Complexity and intensity are important. I exercise 10-12 hours a week. A Parkinson’s dance class, a ballet class, a Tai Chi class, and a Zumba class. The PD dance class is great because it is designed for us and I am with people that have an in common shared understanding. Ballet is difficult. I am the worst in the class but the teacher is very gracious. Tai Chi is wonderful. I float through the exercises and Zumba is pure energy and intensity. Movement gives me a sense of joy and dance improves my confidence and balance and helps unify my body. Imagine that, people with a movement disorder can dance.
5. Attitude. Depression. Don’t get too high it's a long way down. Don't get too low it's an even longer way up.
6. Do not make decisions late at night. Wait for the light of day.
7. Be careful. 
8. I blog about PD. In order to write intelligently, I learn as much about the disease as I can. The knowledge gained also enables me, with the help of my neurologist, to cope with the disease and devise the treatment plan that works best for me.   
9.  Be good to yourself.

The movie is Rocky. I’m Rocky and Parkinson's is Apollo Creed. It’s the early rounds. I’ve taken some hits but am fighting back with a little help from my family and friends. I am at my best when with people and the most shaky when alone. Maybe it’s a man thing but it is hard to accept that people care about me. It is time to get over my foolishness and let them help and be thankful for it. I get by with a little help from my friends. I stay high with the support of my family. Thank you.

PD Symptoms Then And Now

THEN

AND

NOW

There is no standard diagnostic test for PD. If two or more of the main symptoms are present you have it. So does it really exist? You bet it does.

My thoughts at diagnosis. This isn’t too bad. I can handle this … but wait,  a little explanation first. This is a blog. It is personal. The things I say come from me, how I feel and what I think. If you want to know that Parkinson’s is a neurodegenerative brain disorder associated with the loss of dopamine producing nerve cells in the brain whose four main symptoms are tremor, problems with balance or walking, slow movement, and stiff muscles then go to a reputable site like the Mayo Clinic or the Michael J. Fox Foundation. A good resource is the Davis Phinney Foundation which will mail you a comprehensive book for free. But Parkinson’s is a very personal disease. PD affects each person uniquely and the prescribed medicines affect each of us differently. - some work for one person and cause serious side effects for others. I know about 20 people with Parkinson’s. Each person’s symptoms are unique and no one is taking the same combination of meds in the same doses or at the same times of day. A common conversation among PWP is what meds do you take and how do they work for you. We learn from each other and are our own best resource. Back to my thoughts at diagnosis.
This isn’t too bad. I can handle this if it stays this way. RLS under control with meds, right hand shakes a little, meds make my head feel a little funny, but my movement and balance are good and I can take care of myself. It stayed that way for two years and then:

Three years later I am James Bond’s favorite bartender. All my drinks are shaken not stirred. Both hands shake and sometimes my legs and body shakes. I ache and have painful leg cramps many mornings. Am beginning to have trouble with balance and stability. I move in one of three modes: normal movement most of the time, the PD shuffle when tired, and sometimes late at night and especially when dark I careen around the room like a pinball. Little old ladies want to help me while shopping. Kind people offer me their seat on the bus and I‘m not embarrassed to take it. The effort to do the every day and necessary - shaving, bathing, eating, brushing my teeth, putting my shoes on - is getting more difficult. PD is a physical disease that takes an emotional toll. The effort involved to do daily tasks slowly wears you down over time. It’s a double whammy. PD affects the bodies ability to function and also robs you of the energy necessary to perform tasks. Do the dishes - are you kidding , I’m just happy I had the energy to make dinner. But as my body shrinks in on itself and my abilities diminish my spirit grows stronger. Sense of humor intact.

What will the future bring? I don’t know but accept that PD is progressive and will get worse but I believe that I have some influence in determining the progression of the disease. So what am I doing to deal with it? Continued in the next post: Getting By.

In The Beginning

I thought only my family knew that I have Parkinson’s until a few days ago when I reluctantly told a friend and quickly asked her not to tell anyone. But everyone knows she said. How do they know? It’s obvious was her reply. We looked at each other for a moment and then burst out laughing.

The hardest part of writing is getting the first words down just as it has been hard to tell people that I have Parkinson’s. Harder still is to fully admit the implications of the disease to myself and my future. Here goes.

Parkinson’s is brutal. It is with me every minute of the day, affects every move I make and colors almost all my thoughts. I was diagnosed just over three years ago. (Two PWP talking often begin with when they were diagnosed which is different from how long they had the disease.) Restless Leg Syndrome brought me to the doctor. I couldn’t lie in bed at night. My legs were jumping up trying to run around the room with me chasing after them and escorting them back to bed and try to sleep only to immediately bounce back up again. What’s going on here? Will electricity shoot through me and I not sleep for the rest of my life? It took two days to get an appointment with my GP and then three more long weeks to see the neurologist who matter of factly said I told you last year that you have Parkinson’s and to see me if it gets worse. No you didn’t. Yes I did and take three of these a day and let me know if you hallucinate. What … wait I’m almost 70 years old and have enough trouble with reality. I don’t want to hallucinate. I take one at night and miracle of miracles it mostly takes care of the RLS and also induces sleep.

So go my little effort into the world and should you read it know I tried my best and that these are my thoughts at this time and I speak only for myself.

PD BLUES

  I finally found a teacher I can’t ignore

Professor Parkinson’s came knocking at my front door 

Hands started shaking, body began to ache

Doctor said here’s a pill I want you to take

Lost my appetite didn’t want to eat

Started moving like I had two left feet

Went back to the doctor got another pill

Doctor said don’t forget to pay your bill

Sinemet, Mirapex, Azilect too

These are the pills I prescribe for you

These are the bad boys I want you to take

Forgot to tell me I’d hallucinate 

Doctor oh doctor gives me the news

Doctor said you’ve got the PD blues

Decided to sing, decided to dance

Realized life is worth taking a chance

So I picked myself up off the floor

And marched the Professor back out the door.