0.001% Chance that I don't have Parkinsons

I hate being a medical anomaly! I have often had the opposite effect of what medical treatments are supposed to have. This is nothing new. Even when I was a kid, medications like anti-histamines that made most people sleepy would keep me up all night. Caffeine, on the other hand, would put me right to sleep.

I recently had the battery to my deep brain stimulation implant removed. (Labelled as a 'pacemaker' on the diagram.)I remember being told before I had the surgery to install the DBS that if I ever wanted to, I could have it removed. I sure didn't think that would ever happen. I was very hopeful that it would stabilize my wild "on and off" swings, and slow down the progress of the disease.

Since there is no medical test to definitively diagnose Parkinson's, and there are other conditions that may cause Parkinsonian symptoms, I asked my neurologist what the odds were that I didn't have PD. I don't remember the exact number, but it was a minuscule percentage.

My brain programmer Renee said that she could see a difference when the implant was turned on, but I really couldn't tell. And as I mentioned a couple of blog entries ago, it started to give me tremors.

I had just the battery removed; the wires are all still in place. Having the wires removed is a much more complex surgery, and the only neurosurgeon in my province qualified to do this surgery is the doctor who put mine in, and he has since then retired. Also, this way if I ever want to try  DBS again I only have to have a battery installed.

Well, since then, I have been gradually weaning myself of Levodopa, the major PD drug that I take. I have actually been doing better with the lower dose. I tend to have dystonia (severe muscle cramps and spasms) and bradykinesia (inability to move) when I am low on Ldopa, and I get dyskinesias (involuntary dancing, swaying movements) when I have too much. Dyskinesia is actually a side effect of Ldopa.

So I asked my neurologist last week if it is possible that I don't have Parkinson's after all. I have asked this question a few times over the years, and he has always been emphatic that I do, even though I have been an enigmatic patient. I don't think that I felt flattered when I found out that my name comes up frequently at their movement disorder staff meetings.

I will keep you posted.

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DBS - End of the Saga

DBS (Deep Brain Stimulation) has had an almost miraculous effect on many people with Parkinson's disease. I am not one of them.

I had a DBS unit surgically implanted April, 2008. It was an ordeal not for the faint of heart. The surgery was done in two stages. First, the wires were buried in the subthalamic nucleus (STN) deep down into my brain stem through two dime sized holes in the top of my skull.with the wires tunneled across my head, behind my left ear.This was an eleven hour surgery for which I had to be awake so that I could tell the doctors which part of the body was tingling with electrical current. They also had to examine my eyes every now and again, which would be rather difficult if I were asleep.

One week after the first surgery, I was back for part two: the battery implant. There is no room in the brain for this gizmo,so the battery needs to be implanted in the chest. I got one of the old style batteries that would need to be replaced surgically when it runs low.. I was told that it might last for two years. Nine years later it was hardly used.

The goal of DBS surgery for me was to even out my daily on/off cycle. I had high hopes for a good outcome. Turned out to have the opposite effect on me. My dystonia (the excruciating muscle cramps and human pretzel syndrome) got worse, the dyskinesia (involuntary dancing), and the bradykinesia (where every movement feels like trying to walk through a cloud of gelatin. Renee -my first programmer - called it 'wonky'.) all got worse and lasted longer. Fortunately my 'on' hours also improved. When I was on, I felt almost normal. A lot of people only ever saw me in this state, because I tried to plan my day around my on times. Even my family doctor rarely saw me in the other stages. I brought my laptop to an appointment once and showed him video of the other stages. He was quite surprised, especially that I was cycling through all of these states every day.

Nine years ago, I threatened Renee that if the DBS made me worse instead of better I was going to move in with her. Her husband was the surgeon who put the damn thing in my head. Unfortunately, they have both retired now. I met them at a Parkinsons convention a couple of years ago. I told Renee that I had turned my DBS off, and she was rather horrified. She asked if Steve (her replacement) knew about this. I have been too afraid to ask if she confronted him to ask why he would let me turn it off.

While writing this update, I noticed that my 5th chapter of the saga for some reason had never been posted on this  blog, so I just added it and it may be out of order. Here is the missing link.

The DBS has never made a significant improvement in my Parkinson's symptoms . About three years ago I was filling my pill trays for the week, and my hands were shaking so much that it was difficult to pick up the pills. Turning my DBS up and down made no difference, so I tried turning it off (something Renee had told me to never do!) and the tremors stopped immediately. When I turned it back on  -- and the tremors came back. I tried turning it on and off a few more times,with the same results each time.

Since then, I have kept the unit turned off except to experiment now and then to see if it would do any good for extreme symptoms and for on times to see if they would last longer. It didn't seem to make any difference.

So now I decided it was time to call it quits. Last week I had the battery removed. Nine years ago, the battery implant surgery was a difficult ordeal, especially for the first week after the surgery. I was hoping that the surgery to have it removed would\be easier to recover from. No such luck. I have not been sleeping well, so all day I have been falling asleep and having extreme symptoms that are lasting for hours.

The surgeon left the leads in my brain and the wires tunneled down to my chest. He secured the ends in the chest cavity in case I ever want it hooked back up again. Now I am feeling the wire tubes moving around. I wonder if I made the right decision.

DBS implant turned on at last!

Here is the last of a series I wrote in 2008 when I had surgery to implant a Deep Brain Stimulator to control symptoms of Parkinson's disease:

June 12, 2008: Yesterday I had my first “programming” session to adjust the settings on my implant. This experience seemed like something out of science fiction (as has this whole process). Renee, the neurological nurse who programmed me, used a remote control device to communicate with the implanted technology. She held the remote over the spot just under my collarbone where the battery pack was implanted. The battery pack in turn communicated with the stimulation device implanted deep inside my brain, with wires tunneled under my skin to connect the two. Renee then used a hand held tablet gizmo which somewhat resembled the medical tricorders used by the doctors on Star Trek. She tapped on the screen with a stylus to individually set the levels of stimulation of eight electrodes, four of which were hooked to brain cells on each side of my brain. The electrodes on the left side of my brain control the movement and sensations of the right side of my body, and vise versa. My Parkinson’s symptoms primarily affect the left side of my body, so she started with the right side of my brain.

As Renee activated each electrode with her tablet gizmo, I felt different sensations over my body. And no, unlike the woman in the TV commercial, I did not smell burnt toast. Mostly, it was like electrical tingling in different body parts. Sometimes my eyes would react and go out of focus, like they do when I try to stare at those 3D drawings in the newspaper where you have to stare until you see a 3D image. After about 2½ hours of this testing, she set the levels and sent me off for lunch. After lunch, I went back, and she showed me how to use my own remote control at home.

So now I can control my own DBS levels, within parameters that Renee set up for me. If I get dystonic (which means cramping muscles, unbelievable pain – where my toes curl under, my ankles turn outward, my arms raise up elbows first and I can’t lower them, my neck twists to the left and down – and I’m grateful because some Parkinson’s patients get these cramps in their facial muscles and that hasn’t happened to me yet), I can turn up the stimulation and get some dopamine flowing. When I get dykinetic (which is a side effect of my medication and results in uncontrollable swaying, dancing movements that my sister says looks like I desperately need to use the bathroom), I can turn down the volume. Either way, I get a quick reaction, which is impossible with pills.

I think I might enjoy living like a Borg (for you non-trekkies  out there, the Borg are an alien race who are part humanoid but have machine parts implanted). I still have Parkinson’s disease, I’m still in a great deal of pain, and it is still very difficult to do much of anything, but now I look cool! (Except for the patch of very short gray hair right on the top of my head and the inch of gray roots that I can’t dye until the incisions heal. Yeah – besides that, I look like a very cool 42 year old mom with my remote control.)

The Saga of my DBS surgery - More Waiting

Part 6 – More Waiting

May 5, 2008. I hope that the hard parts are over now. [I should have known better!] The DBS device was implanted on April 10.  That was an eleven hour surgery that I had to be awake for so that my brain could be mapped out.  Then, a week later, April 17, I went back to have the battery pack installed under my collar bone, with wires tunneled down the side of my head and neck to join the battery to the device. Before I left the hospital, my neurosurgeon turned the device on at a very low setting just so my body gets used to it.

The next step is to wait six weeks to heal before going in to have the device programmed. They do this in stages as well – so I have three appointments in June to get hooked up to a computer. This is a rather amazing medical technology. I will have to avoid magnets (no airport security for me!), for the rest of my life, and always carry a remote control in case the device is accidentally turned off.

You may have noticed that I have not been swaying and squirming as much as before. Apparently the probing done during the surgery before the permanent leads were installed has already had some effect in reducing the side effects of the medication. That benefit is wearing off. I will be taking medication as usual during this six week interim, so I am back to my “Roller Coaster” days that start off with the normal Parkinson’s symptoms of stiffness and painful dystonic muscle cramps, and cycles of dyskinesia (uncontrollable movement) during the day.

This surgery is not a cure for Parkinson’s disease. At best, it will buy me five to ten years of symptom relief with fewer side effects than medication. But perhaps by then there will be some medical breakthrough, so I won’t need a day pass from the nursing home to attend the girls’ weddings. [As of today, those events are still in the future.]

DBS Surgery Done At Last

Originally published on Triond in April, 2008

Part 5 of my ongoing Saga of DBS Surgery

Part 4 ended with me leaving the hospital. I told you about my wonderfully sweet, sensitive, generous Hubby who took me out for ice cream on the way home. I always say that if pain medication does't work, try ice cream. I hope my girls don’t read this. I am still paying for telling them that the best remedy for a sore throat is Coke. They've had a lot of sore throats since then.

In case you are running to your local bookstore to buy a copy of my manual “How to Train a Husband by getting a chronic, debilitating disease”, don’t bother. For one thing, I haven’t written that book yet. For another, even though I say that “Except for the constant pain and the inability to do much of anything, its not such a bad life”, I really would not recommend my method. A while ago, Munchkinette Number The Other One said that she would like to have Parkinson’s when she grows up so that she won’t have to work. Even though they see me every day, it is very hard for them to grasp how the pain from Fibromyalgia (which was diagnosed about 8 years ago) and Parkinson’s is really a bit different than the pain from stubbing your toe. I try not to remind them too often, because stubbing your toe really does hurt and they need Mommy’s comfort and attention. I was rather embarrassed once in a store when the clerk was complaining about a hangnail, and I told her that I have Parkinson’s disease. Now there’s a conversation ender! But it worked out for good – she told me that her brother also has young onset Parkinson’s, so my rudeness led to a deeper conversation.

I have to wait now for six weeks for the incisions to heal before they start to program the device. For now, it is just turned on at a low setting so that my body can get used to it while I wait. I have not had much dyskinesia (the involuntary dancing motion which is a side effect of medication), because the probing done during the surgery has already had an effect. That effect is only temporary, so for now I am taking my medications as usual.

Thank you for all your thoughts and prayers.

At Home: The first week after surgery

In hindsight, now that my restless leg syndrome has been diagnosed and since I have been on Lyrica, I now understand why it was absolutely impossible for me to rest or sleep. Back then though, I drove everyone crazy with my relentless walking at night.

Deep Brain Stimulator Surgery

Part 3: The First Week at Home

April 19, 2008

My doctor said to go home and sleep. My brain wouldn’t cooperate. I went into restless/exhausted mode, where I would lie down, but couldn’t get comfy, so I would get up again, and be too exhausted to do anything. I drove hubby nuts. I also was banging into everything, and I still don’t remember how I got some of those nasty bruises on my legs.

All week I was amazed at how calm my body was (except for not being able to rest). The dyskinesia  (dancing, uncontrollable swaying movement) was gone, and the device wasn’t even activated yet! My surgeon explained that this was a brief side effect of the surgery; the brain probes that they do while mapping the brain before implanting the permanent device have a bit of a calming effect for a few days.

I didn’t go out much. I was afraid of scaring people with my reverse Mohawk hairstyle with 18 staples in 2 rows on my head. When I did go out, I wore a scarf. Hubby asked me why I bothered, since whenever I ran into someone I knew, I pulled the scarf back to show off my war wounds. He just doesn’t get my flair for the dramatic.

After one week at home, it was time to go back to get the battery pack implanted. I thought this surgery would be much easier, since I would be under general anesthetic. Well – the surgery itself was easier (for me, at least), but I think the recovery was actually more difficult… Part 4 will describe how I survived (barely) the next surgery.

Post Surgical Daze

This is my second Blogger post of the series that I wrote way back in 2008. I am reposting my original entries that I posted on the Triond web site. I have had links to these articles here on my blog for awhile now, but Triond's links have been inconsistently and annoyingly hard to open.

I am trying hard to resist the temptation to edit these pieces. Some of them were written under the influence of some pretty serious pharmaceuticals. I kind of regret not keeping a copy of the first original version of this piece - the one that Triond rejected because it was too short and incomprehensible (they had tougher standards back then). So this would be the second version of the original series that I wrote for Triond. It is the second post in this Blogger series, but it is part 1 of the original series, since my last Blogger entry was written four sleeps before the surgery, and was not included in the original series. 

I think I am still feeling some of the effects of those pharmaceuticals. 

Parkinson’s Surgery: Deep Brain Stimulator implant

Part 1: Post-surgical Daze

  

April 10, 2008

I was admitted to the hospital the evening before the surgery, so that they wouldn't have to depend on me to be on time at 6 am on surgery day. (Someone must have tipped them off about my challenges with punctuality.) First thing in the morning, they started with the standard hospital routine of poking me with sharp things.  Kudos to the IV specialists at the Health Sciences Center in Winnipeg – every IV needle went in on the first try. They took me downstairs for an MRI, then attached a “halo” to my head. I hope that the halos in heaven are nothing like this. This one weighed a ton, and had to be screwed to my head in 4 places. These screws are only skin deep, but skin hurts! This prevented me from nodding my head, which I soon found out is a deeply ingrained instinct when someone asks a question.

Then they wheeled me into the OR, where there must have been at least 15 people. One team was off to my right, where I couldn’t see because I couldn’t turn my head. I’m told that they were examining my MRI results. The surgical team kept leaving, except for Dr. Vivian, a resident anesthesiologist, who never left my side except for one tea break. She was from South Africa, so she had a cool accent to match her colorful surgical hat. She became my lifeline during the surgery.

Vivian kept herself at my beck and call, so I asked her why the surgical team kept leaving me. She said they had to draw a map of my brain, and to write in the details of what they found. I asked if while they were in there, could they keep an eye out for loose wires. They were mapping out just the right spots to place the electrodes in a tiny part of the brain, only millimeters long. But they never did find the loose wire in the part of my brain that used to be able to do math.

They tested several spots on each side of the brain, and needed me to be awake to tell them stuff like “how many fingers am I holding up?” & “Can you feel this electrical jolt that we are shooting through your body?” By the end of the eleven hours, they were having to wake me up to answer these questions. It was frustrating for both me and them that I could feel the electrical jolts, but couldn’t open my eyes or speak – I could only squeeze Vivian’s hand. My apologies for her bruised hand!  Sometime during the last hours of surgery, my legs started to cramp up from dystonia (Parkinson’s unmedicated extreme – painful muscle cramps that I have been waking up with every morning for a long time), so they gave me enough morphine to knock me out. I don’t even remember hubby and the girls being in my room when they wheeled me back in – about 12 hours after my day started. 

My DBS Surgery Blogs - Four More Sleeps Until Surgery

These are my before and after surgery experience blog posts from 2008. They were originally posted on Triond, and I had posted the links here on my blog, but the links are not working consistently anymore. They say that everything posted on the internet stays there in the cyber ether somewhere, but I think it gets harder to find after awhile. If you have the patience to reload each link 5 or 6 times, click your heels together, and hold your tongue just right, you can get them to load most of the time, but I thought these posts would be much easier to read as a continuing story if I post the entire original articles here. Maybe I could add updates where relevant. Some of the entries may have been  composed while still under the influence of hospital drugs.

Four More Sleeps until SurgeryApril 7, 2008

Greetings to my family, friends, and readers! I said that I would keep you updated on my progress as I journey through this maze called Life with Parkinson’s disease. Lord willing, I will be undergoing surgery on Thursday, April 10, 2008 to have a deep brain stimulation device implanted in my brain. This is considered to be elective surgery, so I have been warned that the surgery date could be bumped if someone with a more urgent condition needs the operating room. My neurologist once had a patient all prepped for surgery, with the halo frame in place, when they were informed that the OR was needed for an emergency surgery. My prayer is that if my surgery gets bumped, it would be before the IV needle is in place.

I have been waiting for this surgery for about two years now, so it seems rather surreal that it is now so close to actually happening! Friends have been asking if I am excited or anxious, and I say YES! The anticipation of fewer medications and therefore less severe side effects is very exciting, but I am also anxious about the actual surgery and possible complications. This is brain surgery, after all! It will be an eight to ten hour surgery, and I will be awake for most of it. They need a conscious patient in order to map out the brain and find the best spot to implant the device. After that, I will be put under general anesthesia to have a battery implanted under my collarbone. Maybe while they are at it, I could have some Borg technology implants just like Seven-of-Nine on Star Trek Voyager. Or perhaps they will find the loose wire in the part of my brain that used to be able to do math. With a tweak here or there, maybe I could finally be able to figure out where the train traveling west at 60 kilometers per hour will collide with the car traveling south that has stalled on the tracks.

All kidding aside, this surgery is designed to replace at least some of the Parkinson’s medications with electric stimulation. Contrary to what Rush Limbaugh and anyone who believes his uneducated slander of Michael J. Fox’s appearance on a TV ad, the uncontrollable swaying movement (my sister has told me it looks almost like I have a desperate need to use the bathroom) is actually a side effect of the medications. This movement is quite painful, especially if I try to control it. My handwriting is hardly legible anymore, and the reason that I am able to type this article is the magic of the delete key, which enables me to eventually create clean copy. Without medication, my body becomes rigid, with overwhelmingly painful muscle cramps and spasms. My days consist of a never-ending cycle between dystonia (painful muscle cramps) and dyskinesia (uncontrollable movement). The desired outcome of surgery is for the DBS device to make the effectiveness of medication more even.

My knowledge of Parkinson’s disease, its symptoms and treatments is based solely on my own experience and research. I have no medical credentials, and I am not endorsing any product or procedure. This is just my story. If anyone reading this is also dealing with Parkinson’s, especially young adult onset, I would love to hear from you.

Update July 8, 2014:

My neurosurgeon was unable to find the loose wires in my brain, and I don't think he even looked into sourcing any Borg technology. But I guess brain surgeons are pretty busy.