Thursday, February 21, 2013

Here's Where the Strings Come In

I'm standing on a stage
Of fear and self doubt
It's a hollow play
But they'll clap anyway

At a fundamental level, I started this blog for me to have an outlet for venting some complicated emotions I was dealing with. So, this all started with me basically talking to myself in an empty room some months ago. The only people listening were the handful (and I seriously mean a very small number) of people in my life who I have told about my P. But at another level, I did this because I believe my voice can add something to people's lives and maybe for a few make the world a little easier and friendlier. There aren't many people who can convey the objective scientific understanding and the subjective experience of P. This was something the other P (from post 1) understood right away, but it took some time for me to be ready to accept that load.

Given that goal, I have aimed to promote my blog to people who might be interested, which isn't easy when you have banned the small handful of readers you started with from telling anyone about it, or even publicly following you. Well, recently thanks to some influential plugs, some people (a lot actually) have started discovering Parklife. Huge thanks to @mocost, @drugmonkeyblog, @scicurious, @neurowhoa, @PDFParkinson and many others who responded supportively.

The positive response leads me to thinking it's time to write the post I've been planning and fearing since the blog began. I want to tell you my story. Relax, I am not going to reveal who I am here. In fact, I will probably never directly associate my real world identity with the blog, but this is prelude to coming out to more people in my life. Eventually I assume it won't be hard for people to figure out who I am. Believe me, I fully understood what I was setting in motion by starting my blog. At this point, the momentum is likely inexorable.

There is a more proximal issue however, and that is that the details of my story may very well be a blueprint for people who are close to me to find out about my P, should they happen to read it. Perhaps there are people who already have suspected/figured me out by recognizing my style and personality. How many neuro assistant professors do you know who name check Steve Albini? Anyway, if such a person reads this, I don't mind, but please do me a favor and keep it to yourself for now. Hold on to the fact that you know a side of me I've hidden from some of my closest friends. Honor that unusual sort of intimacy by respecting it. Also, please don't confront me with it - it will be awkward. I'll be open about it before too long. The goal is for me to be the one that chooses the timetable for telling the world, not the disease, and not the rumor mill. I hope you understand that.

Anyway this is what happened...

*****

Viewed in hindsight, I would have to say the evidence that something was wrong goes back at least 4 years. At that time, I remember noticing deterioration of my handwriting (which was already pretty hurtin') but nothing else and I thought nothing of it.

Symptoms really ramped up right after I started my lab. I believe this is no coincidence. If I've learned one thing about P, it's that it is modulated by stress, anxiety and other strong emotions, sleep, and exercise. Seriously, these factors easily make as much of a difference as any drug I've experienced. And let's just say that starting my lab and moving my family across the country had me not doing well on any count. It was hard for my whole family, and the confidence/despair gap had me nearly at a breaking point.

I noticed a few things. First, I was not swinging my arm, but rather holding it in front of me. I thought it was just a weird habit, but I now know this is really common and it's still hard for me to swing normally. The second thing I noticed was problems with my handwriting and typing. I am really slow to type (which doesnt help with emailing or grant writing). At the time, I was filling out a ton of paperwork, and I thought my hands were just getting tired. I never suspected P, because in my ignorance, I thought that was a "shaking" disease, however these are classic signs of the more typical bradykinesia and rigidity. Also I had an occasional minor twitch in the last two fingers on my hand. I quickly noticed the stress-modulated nature of these features, and I concluded that they were hysterical and musculoskeletal in nature.

Another symptom reared its ugly head around that time, one that's difficult to talk about because it may make me seem weak or unstable: the dread and anxiety. I have largely banished this one long ago, but it hit me like a ton of bricks early on. I still have no idea what proportions of it were composed of P (likely), reaction to the stress of (the still unnamed) P (likely), and reaction to the stress of everything else in my life (again likely), but these ingredients generated a perfect storm of "Holy crap! I'm going to crack the F up!". It was grim, and my attempts to hide my anxiety and what I was going through only amplified my paranoia and isolation.

Enough weird stuff was happening to me that I considered (a) brain tumor, (b) focal dystonia, (c) ALS, (d) Huntington's disease (e) MS and (f) straight up losing my mind. It got bad enough that I went to a local neurologist after a few months. The doctor ordered a structural MRI of my brain and the wait for the results of that was the hardest wait of my life. I seriously entertained the worst possibilities. Tumor was bad, but the most horrifying possibility was ALS/Lou Gherig's disease. Bear in mind this is all while trying to start a lab. Not my finest hour.

To my relief and puzzlement, the verdict was "normal". I wasn't sure what that failed to exclude but I knew it meant no brain cancer. In retrospect the doctor clearly suspected P(arkinsonism) from the things she focused on and the tests she ran. She tested for Wilson's disease and did a bunch of neurological exams that I only know now the purpose of. She was really fixated on my arm swing, and she noted cog wheel rigidity in my wrist and poor performance on tests of quick coordinated hand movements. She tapped on my forehead. But I didn't really have a significant tremor, so I protested. Another key feature I didn't appreciate the significance of was the muscle stiffness and soreness. This is one of the top symptoms for me, and it is classic P, but I took it as further evidence that it was stress, tension and anxiety.

In retrospect, I was in no mental shape to accept or process the diagnosis so it's good that I didn't understand, but if I could go back to my self of a few years ago, I'd say "Dude, you have P." Then I'd say "Don't worry, everything is going to be cool."

*****

The doctor prescribed a few months of physical therapy and told me to come back in a year. The PT helped significantly and I chilled out a lot so I was much better for a while. I ended up certain that it was stress-induced musculoskeletal problems. I started getting people in my lab that were getting things done and I slowly dug out out of the hole.

Several troubling things made me worry that something else was going on however. One was that I was slowly developing a tremor after all. Interestingly, this tremor was initially only on movement, not at rest. Classically this is considered "benign essential tremor" and many non-specialists will tell you not to worry about it. It is linked to the cerebellum rather than the basal ganglia, and it is exaggerated by caffeine, nervousness, fatigue, and strong emotions of any kind (as is my tremor), and it is treated with low doses of the "beta blocker" propranolol. Thank you thank you thank you, sweet sweet propranolol. It is the game changing atomic bomb for me successfully hiding my P from you, and it saved me from losing my mind. Around this time, it was revealed to me that several members of my extended family have had ET, and were diagnosed as such based on the movement-related presentation. One of these was my grandfather, who passed away some years back, and who I now am convinced had undiagnosed P. But that's a story for another post. Second, symptoms began to appear in my foot and leg, which is hard to explain by musculoskeletal/peripheral nerve issues. Third, I found myself 'freezing'. I don't know if you know what that is, but I could, and someday will, write a whole post on how weird it is. It's when I go to move my hand or arm and it well... won't. It just sits there and shakes. Notice I didn't say can't. There is "nothing wrong with my arm". It is still perfectly strong and capable of moving, but I subjectively experience it as refusing to do what I tell it to. It is is odd to have such a direct confrontation with the intersection of the neurophysiological and philosophical constructs of 'the will'. Again, classic P. It's typically subtle but I certainly notice it.

So I went back to the neurologist 1.5 years after I last saw her and told her what was going on. She said: "Walk over there for me. You're still not swinging that arm, huh?" She reran the same tests. When she was done, she said: "I think you have P. I'd like to put you on Sinemet to see how you react." A lot of doctors do this and if you respond they know it's P. I explained that I wanted a second opinion before going on any drugs, and she understood. She encouraged me to go to a major regional medical center that has a group specializing in movement disorders and I got an appointment six weeks later. This was a hard wait too, but by now, despite having some hope that it was just some weird form of ET, in my heart of heart's I knew what the guy was going to say.

The day came. It was July 1st, 2011. My wife came with me and we made a good day trip out of it. A fellow from one of the top movement disorder centers in the world saw me. Amazingly, he spent almost an hour with us. We started with me telling him the whole raw deal, everything I told you above and more. He just listened and took notes. He was very thorough in his exam. He didn't say anything really as he prodded me, with each test a diagnostic differential. When he was done, he sat down at the desk, folded his hands, looked at us, and bluntly said: "Based on your exam, what I see is a clear case on Parkinsonism. Based on your history, the overwhelmingly likely cause is Parkinson's disease."

When I describe the doctor's demeanor, I don't mean to imply that he was callous or cold, just sort of clinical and dryly intellectual. This is notable because the experience was oddly scientific, even collegial for me. As I asked him many questions, and it was almost like we were talking about someone else, or even an interesting recent research study. Looking back, I think this dynamic flowed from the lack of surprise about his diagnosis, the unreality of the moment, and my view of him as more peer than authority. I'll go ahead and add the obvious that it was also easier than staring into the abyss of uncertainty. I am completely serious when I say that I have only good memories of that day with my wife. We had a good time and our day was more or less a template for how I try to live now. Who knows what the future holds for any of us, so why get bent out of shape about if things are ok now? There is tremendous variability with P and I may stay this way for more than a decade. Honestly, I went to bed that night feeling something not unlike relief.

*****

There are obviously many more things to tell about what has happened since that day, but really that's what the whole blog is about. Stay tuned. I can't really overstate what a huge step it is for me to open up about this stuff knowing that eventually people will link it to me. But at the end of the day, openness is my nature. The secret wears on me, and it pains me more and more to not level with the people around me. I'm not ready to go public yet, but I'm OK with where this blog inevitably leads. I'm not afraid anymore.

Here's where everything comes together
Either that or it all falls apart
Yeah, here's where the strings come in

2 comments:

  1. Not much to say but thanks.

    ReplyDelete
  2. Thank you for this blog. Not that it is possible to really understand why these things happen, but remembering that others have been through them too is oddly reassuring.

    Diagnosis is funny. For my family, we knew something wasn't right when my stepmom started slurring her speech after Thanksgiving, but couldn't figure it out right away. Was it stroke? Possibly TIA? Or maybe she'd had more to drink than she realized. At the hospital her speech seemed to recover and they told us there wasn't any evidence of stroke. By January when we saw the neurologist she'd fallen a few times (probably due to foot drop) and frequently choked while drinking. As they ran tests, we hoped that it might turn out to be Lyme's disease or MS (weird to wish these things on a loved one, but at least there were treatments and we knew that we'd have some time). But everything came back negative and they determined that it was ALS. She passed away 2 years later.

    Sometimes one diagnosis is a reprieve from another. But even when it turns out to be the worst thing you can imagine, it is freeing in other ways. For my stepmom this meant drinking her coffee with 4 lumps of sugar (because why not) and finally taking that trip to the Florida keys with her best friend since childhood. Those of us left behind are still trying to make sense of a world without her in it, but life does have a way of moving on.

    All I really want to say is that I think you are doing everything right. Keep spending time with your family and continue to be the great researcher, educator, and communicator you are. Science could use more role models like you.

    ReplyDelete

Note: Only a member of this blog may post a comment.