I attended the 4th annual Parkinson’s Symposium, sponsored by Froedtert Hospital, today. It was held in a Waukesha hotel’s conference center. As I pulled into the parking lot, I wasn’t sure I was in the right location, until I saw the slow migration of men and women doing the PD shuffle from their parked cars to the hotel entrance. I knew immediately that I was with “my people”, and it occurred to me, as I entered and waited in the long registration line, that it would be a mean but funny joke to yell “fire” in this crowd.
I’ve been to a few of these now, and find the speakers to almost always be very interesting, and today’s symposium was no exception. As interesting as it is to hear the scholarly presentations from dedicated professionals, I find the real value in these things is the opportunity to interact with other patients and learn about their experiences. Today, at my table, I was, as is often the case, the youngest person (at almost 53 years of age, it may be the last demographic where I am considered a “kid”). What was different about today’s table is that the two men who sat to my left had both had Deep Brain Stimulation (DBS) surgery. This gave me a rare opportunity to trade notes with others who have been through this surreal process. We all agreed that the pre-op process of clamping the metal frame to the head was possibly the worst part, and they were able to corroborate my experience of, as they screwed the spikes into my head that would hold the frame in place, being able to feel and hear the breaking of skull fragments. Then there’s the part where they install the electrodes in your brain – while you are awake! We traded memories of this, like old soldiers trading war stories, with one of the guys telling the scary story of how he almost died from the anesthesia administered to him afterwards, and that in the rush to save him (he was clinically dead for two minutes), they accidently dislodged the electrodes they had just put in, resulting in the surgery having to be re-done. We traded notes on our neuro-transmitters and their operation and maintenance. We discussed the differences between my one battery and their two battery systems like we were discussing the differences between six and eight cylinder car engines.
While we were out on break, I ran into a face that looked vaguely familiar. Looking at his name tag, I recognized him as a nuclear engineer I used to work with at the Zion Nuclear Power Plant, more than 15 years ago. I went up to him and we talked for a while, with him finally confessing that he didn’t remember me. That was okay, as it has been a long time – we had a nice chat none the less. He is about the same age as me, and it turns out he was diagnosed a couple of years before I was, and that he too has had the DBS surgery. He is now teaching engineering at the Milwaukee School of Engineering. Like me, his handwriting has become completely illegible, and like me, he is dealing with frequent and debilitating periods of daytime fatigue. He is wrestling with how much longer he can keep working, just like I had been for the past couple of years before finally throwing in the towel in late March of this year.
We talked for a while in the hallway, until the program began again and it was time to return to our tables. I said it was nice meeting him again and that I wish it were under different circumstances. We both agreed that things aren’t as bad as they could be and that there are a lot of worse things we could be afflicted with.
This is one of the things I’ve learned from attending these conferences. We PD patients are, for the most part, a pretty resilient group. When we talk, there isn’t a lot of whining or complaining about our fate – there is more the comparing of notes. Recognizing, for example, that nearly every PD patient I’ve met has experienced to some degree the same issues with sleep disturbances and daytime fatigue, is somehow very reassuring for me. I think it is because having Parkinson’s is such an intimate experience – the disease is much more than the impaired motor functions that result in tremors or the shuffling walk or the slurred speech – these are, to borrow a phrase from a Chicago symposium I attended last year, just the tip of the iceberg, the part that’s visible above the water’s surface. Like an iceberg, about 70% of the Parkinson’s experience lies beneath the surface, and is known only to the patient. This results in one of the worst symptoms of Parkinson’s – the feeling of isolation. If for no other reason, the symposiums and conferences and support groups are worth attending for the simple knowledge that you are not alone.
So thanks to all the professionals who put together these events and donate so much of their time, talent and knowledge. Thanks for your passion and commitment to our rag-tag community of the slow and unsteady.