You may wonder how I'm doing but I often wonder the same thing, so I thought it might be helpful for me, and informative for those of you with any interest, to try and take a step back and look at some data points associated with my health. My perspective and outlook today may have to be normalized somewhat (i.e., adjusted downward) since I am still riding an endorphin-high from an epic ride at sunrise this morning with Fabio (see "El Paso con Fabio").
Health
I'm finishing one clinical trial for my heart, and starting another for my PLS. I've had a couple recent falls, but no major damage. I continue my workouts and stretching 5-6 days/week, and experiment with different workout regimes from time to time. I do know that getting in the water feels great-- mentally, physically, spiritually-- all around as I've written in prior posts (see "Into the Water"). Random observers have commented that I seem to have stabilized a bit, after what they perceived to be a fairly rapid initial decline. But I was feeling the onset of PLS long before anyone knew what was going on so that may account for at least part of their perspective.
Part of the challenge of having a disease like PLS, i.e. a disease that affects everyone differently across a broad spectrum of commonality, is that it's tough to know if and how something is working or not. I mean-- we know that physical activity is good, but there isn't much intel on specifically what activities are best, what physical program is optimal. We are all trying to find our way in the dark at some level. In a way it's frustrating. But one thing is for sure-- it requires faith and determination, which is what I try to bring to the table each and every day. Most days it's easy to do; some days, not so much...
So, the heart. I suffered a stroke sometime in my past; we don't know exactly when. Because of that and the associated risk of my having another stroke, I should be on a blood thinner to help prevent another stroke. The problem with that is this; if you fall while on a blood thinner, there is always the risk of internal bleeding, which is not good-- what the profession calls "bleeding out." You guessed it-- with PLS I am at a relatively high risk of falling. Combined with the risk of bleeding out, this creates a high risk of having a real problem from bleeding out. Enter the "Watchman" device. Implanted in the atrial appendage of the heart, it captures blood that could result in a clot. This allows the "subject" to go off the blood thinner. I was fortunate to be part of a clinical trial the put the Watchman device in my atrial appendage last summer, and all has gone well. On to the PLS trial...
Simpler. I am, again, lucky enough to be part of a trial for a drug that has been somewhat successful for a cohort of MS patients; specifically, helping them with their gait. Called the "walking drug," the trial is for PLS patients to determine if and how much it can help PLS patients with their gait. It's an 18-week trial, and I'll start taking the drug, Ampyra, August 28th. Hoping for the best, but prepared for anything.
Other than that, I've lost a lot of muscle mass, a tide which I try to combat, of course. Much more importantly, however, I continue to be inspired by human connections, acts of kindness, natural beauty, and raw faith...embracing the wabi-sabi philosophy of life...
Sub-40 & Sub-6 Mile Pace
That's right; you read that right. Two and a half miles and I threw down a sub-40-minute pace! 39 minutes, 12 seconds per mile, to be exact, for 2.5 miles. and no falls...Conditions were optimal, and though the crowd was small (ok, to be clear, there wasn't another person in sight), the spirit was large. Using hiking poles on loan to me by my friend Li-Li, I was mostly able to stay within one lane on the track, although "lateral drift" did take over a few times. It took me a day to recover from the stiffness in my hips and the overall fatigue...
Now for the sub-6 part...
Before we found someone to chase down on our ride this morning, and as we often do, Fabio and I catch up on various topics, the state of our lives, the deer we see, the stillness, majesty, and serenity of the dawn, or how the bike feels, for example. And often we are quiet, communicating in silence and sharing the peace of the morning. I always know how hard he is working; the movement of his head and shoulders, the effort in his breathing. "Condividi," I'll gently ask. Italian for "share," I say it when I want more of the workload. While we are always pedaling in synch, we are not always sharing equally in the workload. This may be intuitive, but it became apparent to me when we were on a steep climb; Fabio's tongue was on the ground as he worked feverishly, while I comfortably tried to hold a conversation. The constant give and take, the balance, the sharing...yes, the "Condividi." So many nuances and dimensions of tandem riding. I digress...(Future post?)
But this morning I wanted to hear about his triathlon, in which he had competed two days prior. Fabio doesn't swim regularly, and only entered it on a challenge from a friend. But, he won his category. "I passed the 2 guys in front of me with less than a quarter mile to go!" he laughed. His run had gone well, he said. He usually runs sub-6 minute miles in a running race, and even at the end of this triathlon, he was surprised he was able to maintain a 6:10 pace...
A "sub-40" and a "sub-6." I find myself struck by the harmony, balance, and wabi-sabi of me and Fabio on the Paso Doble. The Beauty.
Riding
Speaking of which, our weekly rides couldn't be going any better. My leg speed and cadence have improved dramatically. And although we've laid it over a couple times, they've been "soft" falls-- one a result of "sub-optimal" communication and the other due to a mechanical issue due to the first fall. We didn't discover it, of course, until after the 2nd fall. We are fortunate; no damage to us, and we're stronger and better from the learning. The gift that just keeps on giving; how lucky am I?
Letters to Alexa
Alexa comes home Saturday, having been away at camp for the summer. I write to her every day, although I've sent the last of "Dad's letters" to her, given the few days it takes for Alexa to receive my letters. Despite the trouble and frustration I have with the mechanics of the art of writing, I love to write to Alexa. Selecting the card and its message, my message, accessorizing the card (heart stickers?!) and the envelope...the stamps! The simple joy I get from shopping for and finding cool stamps! Whether it's "Scenic Rivers," "Military Working Dogs," or "Lil Mo" (Connolly, tennis icon and champion from years ago), I find joy and peace in my daily arts and crafts ritual, a neglected art.
"What do you write about?", asks Kara. Anything really-- how I'm feeling, what I'm doing, how I feel about what I'm doing. Sometimes I am more courageous and strong and talk about my fears. The day-to-day. In one note, I included a small piece of sea glass from Church's Beach, Cuttyhunk, and a few grains of sand to let Alexa know that she is with us, that we are thinking of her, loving her and missing her no matter where we are...always.
And maybe Lex will keep these letters forever, looking at them from time to time. How do they change from summer to summer, or do they? Does the content reflect my recognition of her growing maturity? Or maybe they let her know, more than she knows at any other time of year, how I am; we are closest during her summers away, ironically...
I dim the lights. I turn on my Turkish Lamp from Istanbul. I put on Adam Hurst's "To a Darkening Sky." I open the windows to the night; the soft breeze enters. I compose...
To Alexa...Love Always, Dad...
Fishing Vest
I have to drop some knowledge on the vest! Full disclosure-- I am a proud and shameless bandwagon guy. So, I was perusing the "Off Duty" section of my favorite read the other day (the weekend edition of the Wall Street Journal), when I came across the fashion section, my fave section. One article spoke of how the fishing vest was being worn by some guys in NYC-- guys who need pockets and who don't like the feel of stuffing their pant pockets full of stuff. I thought...dah!!! I hate having stuff in my pant pockets! A light, utility vest with 13 pockets that doubles as a fashion statement piece? I'm down!
So I stopped by the fishing department of my local Outdoor Store to see what I could find. Oh, snap! Pockets for wallet, keys, phone, pen, Clif Bar (or 2 or 3), blog cards, lunch-- seriously there's a huge pocket in the back, and I still have 6 pockets left!
Of course I ordered another, just for some variety. Photographers were way ahead of the game!
So I am doing well, I think. The highs are very high, I assure you, and that is due, in part, to you. Thank you...thank you, thank you, thank you...