Several people have asked me to comment on my post surgical results. I believe the main benefit, right now, seems to be a decrease in my “dyskinesia” and “bradykinesia”. Dyskinesia is uncontrolled muscle movement, it is associated with flailing arms and legs. My dyskinesia is not that bad, right now it manifests itself in less dramatic ways: my shoulder or head move without me wanting them to. There also seems to be some improvement in how long I can go before I have to take another dose of Sinemet. That in itself sounds good, but what happens is that I forget to take it (because I’m feeling good) and then become very stiff (bradykinesia) and my movements really slow down. Then it takes 45 to 60 minutes for the pill to kick in.
I may have mentioned before (in earlier blogs) that Carbidopa only has a half-life of about 45 minutes. That means that 45 minutes after you take the drug only 1/2 of what you took is still working. Forty-five minutes after that, only have of that amount is available. What researchers have tried to do is use different metabolic pathways to get the drug to your brain and increase the half-life. One such drug is called Stalevo. I was on Stalevo, but am now back on a drug called Sinemet. I like Sinemet because it is a lot less expensive.
Getting back to the stimulator: It has to have its output programmed. For example, the amplitude, pulse width and frequency are all important. I don’t know if the signal shape (for example sine wave or square wave) is important or even if it can be varied.
So far I’ve had two stimulator sessions. The first was interesting because when I first entered the room I commented, as did several others, about how cold the room was. After the doctor had entered some new settings, I said it was nice how they were able to get the room temperature up so quickly. The doctor and nurse exchanged glances: “You’ve got the amplitude too high, it’s affecting his hypothalamus,” the nurse said. “Look his face is turning red!”
The room temp had not changed but my brain perceived it as if it had.
The doctor quickly dialed back the settings and the room felt chilly again.
I’m not talking about my goals. I’m talking about my sleep dreams.
As far as I’m concerned, I live in two places: one is here, on planet earth. When I fall asleep, I usually visit another place. It is not always a happy place. Most of the time someone is trying to kill me. I wake up screaming, yelling, fighting. I punch the wall or my poor wife. One time I bit my wife on her arm; it took two weeks for the bruise to go away. I could feel her tissue give way when I bit into her arm. I had no choice: I thought she was a vampire trying to kill me. Another time, in an effort to jump behind a log and hide from my pursuers, I actually jumped out of bed. You should know that is about a 30 inch drop from the bed top surface to floor, and I never woke until I hit the floor.
My dreams are vivid, they are life-like. I see colors, have conversations, and everything has great detail. I have snowball fights, fly through the air (that’s usually fun) and walk around. But all too often things turn into nightmares. Horrible nightmares. Horrible.
My neurologist has suggested not taking my meds just before going to bed, and he is right, doing so seems to stop the nightmares. But the other part, the vivid part remains. This is not a new thing. I’ve had vivid dreams for years.
For me it is one of the four symptoms of Parkinson’s. The other three are lack of, or severely diminished, sense of smell, chronic depression, and balance problems. I’m not saying that if you have vivid dreams that you have Parkinson’s.
The problem is that you can’t just go to your doctor and say “Please check me for Parkinson’s.” There is no test; no way to draw a blood sample and know. There are no genetic markers. A diagnosis is often made by giving the patient Carbidopa-Levodopa and seeing if it helps. If it does , you have Parkinson’s. If not, you don’t. That’s a really lousy way to diagnose such a serious disease, but that’s all we got. That’s what I’m trying to change.
I’ll be the first to tell you: I don’t believe in ghosts. I don’t believe in UFO’s. And I don’t believe in spirits. So how do you explain this (true) story?
In the summer of 1972 my, father, grandfather, brother and sister drove down to St. Louis from Cleveland. My uncle lived in St.Louis, along with his wife (my favorite Aunt Mary) and kids. Uncle Eddy lived in an 100-year-old house.
It was a big place, with three floors, a central stair case and maybe five or six bedrooms. It was a cool house and had a back stair well, basement and back porch too.
I was 20 years old, full of energy, and I’d bound up the stairs two a time. One day I was running up the front stairs, intending to go to one of the bed rooms. When I reached the top, I saw the door to the third floor. I had absolutely no intention of going to the third floor, but when I saw that door, I instantly changed my mind, and ran up tat third flight. At the top I made a180 degree turn to my right.
What I saw will remain imbedded in my mind. It was an old man with long hair, all grey in color. He was sitting qt a desk and there was a window behind him.
He looked at me in a surprised fashion, as if he was not expecting to see me.
Without a word he got up, and walked out through the window.
I can’t explain what I saw. I went down stairs and told my dad. He laughed then he realized how shook up I was.
Did you really see that he asked? Yes, I replied, that is what I saw.
To this day I can not explain it. Whenever I think of it, I get goose bumps.
But that’s what I saw, And that is a true story.
This particular blog is not about me, but is about a family friend, Courtney Miller. Courtney is pursuing a Doctor of Musical Arts Degree at Boston University. She is an oboist. The amount of dedication and work she puts into this is simpy amazing. I’ve never met anyone as dedicated as she. I know professors, doctors, engineers, but none of this people show this dedication.
Focused, intent, well-spoken and talented. Do I sound like a fan? You betcha!
So if you enjoy classical music please check out her music video. You’ll be glad you did. Doug
It appears that everything went just swimmingly. Head doc came up and said the electrodes are exactly where they thought they should be for maximum benefit. Now I have to get the pacemaker implanted and the wires run down to it. Right now the wires are in a little pile similar to a coiled snake or garden hose under my scalp.
Head doc told me that if you have just one side of the brain done, they keep you for just one day after surgery. But because I had both sides done, he wanted to keep me two days. He got no argument from me! I was asleep almost the whole day Wednesday.
However, I was awake in the morning and also late afternoon. In the morning I sent Darlene a flower basket. I thought it would be a nice surprise for her. Soon after I sent them, a (female) nurse’s aid came into my room and said she was there to remove my catheter.
In another life I had been an orderly at Wood County Hospital and so I was familiar with the process. I was curious about how much it was going to hurt. The first step is to Release the fluid holding it inside your bladder. I can’t over emphasis the importance of this! You might think it would be impossible to pull it out otherwise, but you would be wrong. Trust me, I know this.
Anyway, she deflated the balloon and told me to take a deep breath. I did, and she pulled.
Guys, it ain’t (sic) that bad. A friend once said: “Wait until they shove a camera up there to take pictures of your bladder. Then you’ll know what hurts!” Note to my friend: Been there, done that. Got a Tee shirt.
So it was a little anticlimactic.
Soon after that a delivery guy showed up from the same place I ordered Darlene’s flowers. I excitedly exclaimed: “Wait!, wait! Those aren’t for me! Those are supposed to go to someone else!”
The guy looked at the address and said “You are Mr. Bahniuk, aren’t you?”
“Yes, but who would send me flowers?”
“I don’t know sir. Here’s the card.”
It said: “Congratulations on becoming a Cyborg!” Love Brigette.
It was the second time in two days that my kids made me cry.
Once again they woke me and as promised, Dr. Weightlifter did his thing with my body: Jerking my joints, flexing my hands and feet, grabbing my arm and jerking it downward. Lest you think that he didn’t care about me, he told me he knew my left arm just had the shoulder replaced, and he would be careful with it.
Then it was time for the shocking torture. They zapped me several times, the story being essentially the same as before: zapping, adjusting the electrodes, zapping again and finally shooting me with the CAT scan. The head doc indicated he was quite pleased with the results.
Then once again it was Darlene’s turn to try her program. I made the strongest effort I could, sometimes closing one eye, moving my eyeballs to focus on different spots of the monitor, and so on and so forth.
And I was able to complete portions of the test! I was happy! I was able to get several grades of “Excellent”. Even the portions where I jumped the gun or was judged “too slow to start” contributed meaning full data. So I was very happy.
The head doc told Darlene to put away her toys and then told me they were closing my wound. He said it would take another 20 minutes or so. I think I passed out again, because the next thing I remember was groaning because of the pain from the nasal cannulae. Some guy was pulling it out, telling me to relax. Attached to the cannulae was a huge blood clot. When he finally got that out the pain decreased dramatically, but the nurses seemingly recoiled in horror.
Not long after that, my wife Alissa showed up. She fed me ice chips; I was so thirsty, I had her shoveling in my mouth as fast as she could. Alissa also brought my cell phone and I called a bunch of friends, telling them about the operation. Of course, I don’t remember talking to many of them, a downside of “happy juice”.
So my answer to the question (all though never actually posed as one) is yes, the surgery is tough. But it has given me a new life, new hope, and new energy. Thank you John, Darlene, “head doc”, “Dr. Weightlifter”, and the many others that helped me.
In my eyes it is a miracle and you are heroes that made it happen.