Although it’s again been a while since I’ve written, this time I’ll avoid mentioning it if you’ll avoid noticing it. There’s nothing dark and dismal about the gap this time, and I don’t have any new culinary metaphors to disgust you with. I’ve just been…preoccupied.
On the positive side, I’ve been able to take some interesting trips in the last couple of months. Traveling isn’t getting any easier, but it’s definitely worth the effort. I traveled to Marrakech, Morocco with my brother in March, as part of his ongoing project to see how many different countries he can make me carry his luggage in. Both of us were mobility-impaired, me because I’m just that way, and him from a recent knee replacement. Even so, we both got plenty of exercise walking in Marrakesh’s Old City. My brother has always been a great athlete, but I think the fastest I’ve ever seen him run was on the main square in the Old City (Jemaa el Fnaa, which means “Assembly Place of Death.” It’s a cheerful place, with a quaint, colorful history). He was being chased by a Moroccan vendor carrying a large snake, who was intently trying to place the snake around my brother’s neck for that once-in-a-lifetime photo opportunity. I learned some things about my brother that day. First, intense pain doesn’t keep him from sprinting like a cheetah when he’s motivated. Second, the prospect of having a large snake placed around his neck is motivating to him. Third, he speaks Arabic much more quickly and fluently than I ever imagined. He only knows one word of Arabic (“la,” which means “no”), but the effect is multiplied if you string several dozen of them together while limping at high speed across a cobblestone square while being pursued by a man carrying a snake and demanding money. I didn’t help, or even sympathize; I just made sure to get it on video. It amazes me that he still allows me to come on these trips with him. He may be setting me up for something.
About a year ago, I was introduced by Israel Robledo to an organization called the Patient-Centered Outcomes Research Institute (PCORI). Israel is a colleague and friend that I met while volunteering with the Parkinson’s Action Network. He is a tireless and effective advocate for the Parkinson’s community, and he is also a volunteer for PCORI.
PCORI is a non-governmental organization charged with evaluating and funding research proposals to improve patient engagement and understanding of treatment options, so patients can become more active participants in their own care. As part of the process, PCORI asks patients and patient advocates to help evaluate research proposals, and I was fortunate enough to be asked to participate in a recent proposal review panel in Baltimore. Over an intense two-day period, I was part of a group of about 200 volunteer patients, scientists, clinicians, and other interested and interesting people who evaluated hundreds of research proposals for scientific merit and patient benefit. It was exhausting but rewarding, and I met some wonderful people there.
As rewarding as my experience was, it also emphasized how much I’ve changed over the last two or three years. During my professional life, a two-day meeting like this was nearly a weekly event. In the past, mental and physical fatigue were certainly factors and I did get tired, but this time it took me nearly two weeks to recover after this one two-day meeting.
I still have some of the same capabilities that I did in the past, but I just don’t have anywhere near the same capacity. It’s still a little startling to find new evidence that it’s true, and disconcerting to realize that most of my family and friends know it long before I do. As I’ve said before, though, too much realism is no fun. I’d rather keep trying to stretch and find the limits of my capabilities by going beyond them and risking partial success, failure, or exhaustion. I know there are boundaries, but I’d rather be stopped by the true boundaries than by my fear of them. It’s hard on my loved ones, especially my wife – she never knows if I’m going to come home blind from exhaustion, with more holes in me than God gave me, or with the wires accidentally ripped out of my DBS battery pack, but I think she prefers that to seeing me on the days when I can’t get out of my chair.
One of the great things about having Parkinson’s (did I really just say that?) is that I often get to hang out with people older and wiser than me. I was fortunate like this just a couple of weeks ago, sitting with two friends who happen to be Vietnam veterans and who both have PD due to exposure to Agent Orange in Southeast Asia. Both have seen and done things I’ll never experience, and both said, “yes, PD sucks, but life’s like that sometimes. At least no one is shooting at us.” I was struck by how much wisdom there was in so few words – yep, things could be better, but they could be a whole lot worse, too. That’s worth remembering, especially with all the lunacy and misery apparent in the world just in the last week. Good friends, loved ones and family members have been sick in the hospital, crazy people on the other side of the world are threatening to start a nuclear war (and bomb Austin in the bargain. AUSTIN???), depraved maniacs here are blowing things up and killing and maiming innocents, and on and on. There’s ample reason to lose hope, but we can’t – none of us. We keep going as long as we can, and then if we’re as blessed as some of us are, someone carries us the rest of the way.
April is Parkinson’s Awareness Month – please remember that, for PWPs and their caregivers and families, EVERY month in Parkinson’s Awareness Month. If you can attend or support a PD fundraising or awareness event in your area, please do. If you can show a little kindness to someone moving slowly in the aisles or fumbling with their change at the checkout when you’re in a hurry to get your milk and get out of the grocery store, please do. If you can do ANYTHING to give someone affected by PD the hope that tomorrow will be better, then please do it. Your hands, your heart, and your spirit can make a difference, if you choose. Please, choose.
