BEAT Parkinsons

Last post, in Part 2, I left off as I lay on the table feeling hope (related to my disease) for the first time in many years.

Lying completely immobilized, Doctors X and Y would switch positions time and again, moving the lead, adjusting the current/polarity and then retesting me. What was at first was exciting quickly became monotonous. I’m not certain how long this went on, but the surgery ultimately lasted 4 1/2 hours so it was not a short period of time. I was in no pain as I’ve stated before, but now I was becoming more and more distracted by the urge to swallow. This urge was made even more uncomfortable by the fact that due to the tube down my throat, my throat began to feel very dry. My tongue felt stickier with each swallow. I began to imagine my tongue sticking to my throat so much so that I began to internally dialogue (i.e. panic) about what would happen if this occurred. I could barely talk, let alone move. Could I alert them in time, or would I suffocate if I could not? These were likely dumb things to be worrying for a person with electrical leads funneled into their brain surrounded by twelve surgeons, doctors and nurses, but this was anything but a typical situation.

Finally, after what seemed like a couple hours, they were done with the first electrical lead. I managed to focus all my energy on gaining the attention of the nurse who now stood very near me to the right side. Happily, I was able to alert her to my mouth being very dry, to which she emphatically swabbed it with a sponge soaked in water. I remember thinking at the time that this was what mana from heaven must have tasted like.

I then asked “how many more to go”, to which she replied “two or three”. My joy quickly sank as I realized we were likely closer to the beginning than the end. The rest of the surgery went remarkably smooth, iterating between the nurse swabbing my mouth with the sponge, Dr. X moving the leads, and Dr. Y testing my reactions on my right side. I never “felt” anything specific, but when they pushed the additional leads in while I was awake, I definitely felt a “tugging” and a sensation that you typically don’t feel. Before I knew it, however, the part that I needed to be awake and alert for was over and I drifted back off to sleep. The surgery finally over and it was early afternoon.

My first memories of the recovery room are sporadic, as I was coming in and out of consciousness from the anesthesia. They soon rolled me to the Intensive Care Unit (ICU) late afternoon, after having waited for an open bed.

My time in Saint Louis University hospital was short, as far as my awake time. I remember experiencing a decent amount of pain, akin to a migraine or very strong headache. I had a huge white gauze turban wrapped around my entire head coming down over my ears. They periodically gave me percocet for the pain, which did seem to take the edge off for a while. I slept (if being drugged counts as sleep) for two hour blocks the rest of the day and through the night, only to be awakened by the regularly scheduled visits to take my vital signs and give me more medication for the pain. Morning came and I had another CT Scan of my head to check for bleeding, swelling, and anything bad. Dr. X came later came by my room to inform me that everything went well, and that from the CT Scan he could see a small pocket of air in my brain, but that was relatively normal. Breakfast came and looked delicious, perhaps because I had not eaten since late Thursday and it was now Saturday morning. I downed the scrambled eggs, biscuit and juice thinking that it was amazing that so soon after brain surgery I was allowed to eat normal foods.

After being taken back to the room, I was notified that I would be released soon. My head still continued to pound, but at least the doctor (intern) who was discharging me had given me a prescription for percocet to continue to take while I was at home recuperating.

Once home, things progressed very quickly. The “turban” was able to be removed Sunday morning revealing a lovely 2/3 baseball scar with silver staples protruding from it. The headaches were still coming, so I took the percocet prescribed to me for the first several days. It made me very sleepy, but at least I felt good. I slept a lot during this time and my back began to get a little sore because of the fact that it was extremely uncomfortable to lay on either side.

It had been six days since the surgery and that Thursday I got up feeling awful. My stomach and lower abdomen were in excruciating pain – which I attributed to the fact that I ate more food the previous night than I had any day since before the surgery. My parents came down to drive me to Dr. Y, as I had a follow-up with him to look at the scar and make sure everything was healing properly.

But as the day progressed, I felt worse and worse, my stomach was distended (bloated) and I hadn’t eaten anything that day. Even drinking simple tap water made my stomach hurt terribly. This was not normal, something must be wrong. It was now to the point that I could not stand up straight. The pain came in waves, causing me to double over and groan. Little did I know that within hours, I would be admitted to the emergency room.

In Part I, I talked about how I was diagnosed and progressed with Parkinson’s Disease.

The thought of brain surgery for Parkinson’s was for the longest time, a far-off possibility. One that was “radical” and only to be done at the last possible moments before my body became so uncontrollable that I could not function. It was also something I had associated with being experimental and definitely for people older than myself. How little, did I realize that in the end, it was (likely) the best option for me and that five days after my birthday I would be prepped and ready for surgery.

Deep Brain Stimulation, or DBS, was approved by the FDA in 2002 and was always something as a Parkinson’s sufferer I’d heard of but knew little about. So when I started reading about it, I was a blank state. The implantation of a brain pacemaker would send constant electrical pulses that appear to effect the lack of dopamine, the chemical crucial for the proper transmission of nerve-cell signals. This somehow counteracts the symptoms that characterize Parkinson’s disease, including tremors, stiffness, slowness, gait problems and uncontrollable writhing. I read stories and talked to people who had either had the surgery or were close to someone who had. All had seen positive results, some as dramatic as going from wheelchair-bound prior to the surgery to golf or surfing afterward. And for most patients, who typically have to take dozens of pills a day, it also comes with a significant reduction in medication.

That being said – DBS is not a cure for Parkinson’s. Read that again. There is NO cure for Parkinson’s. This is simply a treatment that partially retards the symptoms for a period of time which can be up to several years. With only eight years of FDA-approved research in hand, the long-term effectiveness is still fully unknown. With my neurologist at SLU, Dr. X answering my questions – I decided to pursue addressing whether I would be approved as a candidate for the surgery early fourth quarter last year.

Yes, not everyone is approved for the surgery. You must prove that you are affected severely by Parkinson’s Disease, and that you are responsive to Levodopa therapy (medicine). You will be poked, have your blood tested, prodded, MRI and CT Scanned so be prepared. And none of it goes as fast as you want it to. Then at the end, just as you feel yourself getting excited at the prospect of having alleviation of symptoms that have severely affected you for the better part of a decade, you suddenly have to wait as Dr. X presents your case to the medical review board at SLU to discuss you at the next monthly meeting.

A month and a half goes by and the end of the year comes and goes. Suddenly you get the call – you are approved (and in my case are fortunate enough to have insurance which covers the likely cost-prohibitive albeit proven cost-saving procedure). Now more poking and prodding, and for good measure you must undergo a grueling eight-hour psychological test to ensure the surgery goes well. For the sake of not spoiling the reason for the test, I will forego telling what exactly they are testing for here, though you do learn that later. I also was referred to Dr. Z, a leading neurosurgeon at SLU who invented a hybrid machine that many surgeons use to target the device used to insert the leads into your brain. This device uses a form of GPS to guide the lead into a portion of the brain the size of a pea.

Then came the word I’d been waiting for – the wrangling between doctors, insurance and hospitals was over. I would soon have a date for my DBS procedure after coordinating with Dr. Z’s nurse. By late March, my date(s) were set. The stimulator leads would be inserted into my skull on May 7th, followed by the running of wires down under my skin to a battery in my chest on May 19th. All told, I was prepared to be out from work up to a month.

So the evening of the 6th came and nervousness set in. Was I making the correct decision? Would this procedure work for me? We knew the risks, and they were none to sneeze at. After all, you are dealing with the brain. I took the first of two whole-body antiseptic baths (the second would be at 4:30am the next morning) and got ready to go to Iron Man II Premiere. Yes you read that right – I knew I wouldn’t sleep so I went to the midnight premiere of the movie, knowing it would be weeks before I would be able to even hope to get to it after that.

6:30am – We arrive at the Ambulatory Care Unit at the hospital (which is when they open). There’s something eerie about being some of the first people allowed into that area of the hospital.

7:30am – After changing into the gown (which strangely had a vacuum-like attachment that blew increasingly warm or cold air into an interesting place), they took me back.

Spoiler this is not for the squeamish!
7:45am – They begin my attaching the “base” that the “apparatus” will be attached to my head during the surgery. This involves, 5 screws, 5 tiny novacaine shots where they were to be driven in to my skull, and a LOT of pressure. When I say a lot of pressure, I mean a LOT. There was zero pain here, but when a guy is driving a screw into your head so hard that he has his full weight pushing against you and the drill, it’s not all puppies and kittens. Didn’t feel a thing but I did not care for the part where they tightened it which was a (to me) loud squeaking sound followed by a little crunching sound. (I’ll pause here for those who need to ponder what those might be before continuing on).

8:00am – They scan my head one final time to make sure the exact positioning of the pea-sized portion of the brain 3 1/2″ inside my brain is known. They now have “fixed” markers to ensure this doesn’t move (aka the screws).

9:15am – An IV in my foot, some happy juice and I’m off to sleep. For a while.

?:00am – After cutting my scalp and drilling the hole(s) through my skull, they awaken me. This is the part I was not looking forward to. Again, keep in mind, you feel no pain. The brain does not even have it’s own pain receptors. But for anyone, like me, who saw the movie Hannibal and Ray Liotta’s character at the end, you can only imagine what is happening back where you cannot see.

They have inserted (or screwed I believe may be what they refer to it as, even though it is not a screw) the lead into my head to the portion of the brain they are targeting. Now, Dr. X, who is also present in this surgery, starts his interaction with me. They unstrap my right arm (the side most affected by Parkinson’s which is why this day they are only doing leads on the right side of my brain). Everything else is strapped down TIGHT. Your head is in an almost chokingly tight neck brace and your head is strapped back 10% further than feels comfortable – to the point that my throat felt like it was partially obstructed. I was still “lightly” drugged, but whatever it was allowed me to be mentally aware (and not sleepy AT ALL) of everything being said and done to me. “Shawn, tap your right hand now,” Dr. X would say and I would do the standard Parkinson’s test over and over again, then Dr. Y would come back and say a series of numbers and they would try my test again. What was happening was that they were attempting to optimally place the lead so it would have the most positive impact when releasing it’s charge. A requirement of this day was that I had no meds (which is MISERABLE) and I was very shaky on my right side. But suddenly they hit a series of settings and I can snap my right hand’s fingers like they are going out of style.

Is this what it will be like when it gets turned on? I thought to myself. It wouldn’t be until June, after the swelling went down before they would take the risk and actually turn it on. But hope began to rise that for the first time in 7 years, I could be able to give backrubs again. (Thanks for catching that sweety!)

The procedure, however, was far from over, and the worst was yet to come (in Part III).

My name is Shawn McPike, and i have had Parkinson’s Disease (for over 8 years). On Friday, I had brain surgery to implant a device to treat this. And in another week, I will have another surgery to connect this device to a battery embedded within my chest.

For the longest time, I kept my Parkinson’s Disease secret. No one other than immediate family knew about it for years. Part of me felt like it was something to be embarrassed about, and that I would simply hide it as long as possible. Another part of me didn’t want to share this information for fear of it negatively affecting being promoted at my work. In the end, it was actually social media which helped me make the decision to share this experience here with you.

The initial symptoms of Parkinson’s Disease began as a simple twitch in my right pinkie and very quickly led to extreme difficulty typing with my right (dominant) hand. As a consultant who’s job completely revolved around the need to be able to type, I assumed that I had what many in my industry had experienced – Carpal Tunnel Syndrome. However, after a litany of nerve conduction studies and tests, This cause was ruled out. The doctors posited that I must have been suffering a type of dystonia. While unnerving, it was somehow comforting in that dystonia was not one of the so called “big diseases” that we feared (ALS, Multiple Sclerosis, etc).

After trying several medications, each with their own side effects yet lack of relief, I decided to change tactics and get the opinion of a new neurologist. This tactic ultimately worked as after intently listening to me rattle off the list of my symptoms, he said “That sounds like it could be Parkinson’s Disease.” He proceeded to say that although there was no definitive test for this disease at that time. However, a simple-yet-foolproof test was to take a dose of L-Dopamine, the treatment for Parkinson’s Disease. If I had Parkinson’s, then within fifteen minutes or so of having taken the dopamine, I would see an immediate reversal of these symptoms. Sure enough, within minutes, I felt perfectly fine. The symptoms which caused me so much discomfort for over a year, were suddenly and completely gone.

It was a bittersweet moment, as the joy of having found the cause of my symptoms weighed against the fact that said cause was both progressive and irreversible. And that the treatment was simply a band-aid over an ever worsening root cause. Over the next several years, things that once were easy like picking a dollar bill out of my wallet, became increasingly difficult. Brushing my teeth became more challenging, and rapidly replying to large numbers of daily emails, many of which required a reasoned response, became near impossible. All of this from the onslaught of first physical, then speech and finally mental effects that I would be presented with every single day.

You see, there is much that is not known and even more that is misunderstood about Parkinson’s Disease, also referred to as PD. Firstly, there is no lab test that can say definitively that you have PD. Trust me here – many of us have been jerked around so long diagnostically, we are just relieved to get a final determination – even if it is PD. Secondly, there is no cure, only treatment. The primary part of the brain affected by PD is the substantia nigra. There, the brain uses the chemical L-dopamine to affect muscle contractions and the fine motor controls of the entire body. in PD, the cells which produce dopamine are dying at a rapid pace, never to be recovered. Thirdly, many of the dyskinesias (or tremors, shakes etc) that people associate with PD are in fact caused by the treatment and not the disease itself.

Intersect that with some medical unpleasantries in 2009 and it became quite clear to me that pursuing “the nuclear option” (i.e. brain surgery) to help alleviate, albeit temporarily, the symptoms of Parkinson’s disease was a necessity.

[Continued with an account of the DBS surgery in Part II]