| THIS MONTH: A HIGH-QUAD'S SYSTEM FOR GOOD HEALTH | | |
| (Editor’s Note: In the July Health Newsletter I wrote about some of the keys I’ve learned to staying healthy and fit as a low quad. For this newsletter, I asked longtime NM contributor Kenny Salvini to tackle the same topic from his perspective as a high quad. - Seth McBride) | |
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| Don't look too closely at Kenny Salvini's computer screen. His system for staying in good health is effective, but not always pretty. | |
By Kenny Salvini
Well, do yourself a favor, don't go looking at the pictures on my phone
Cause you may see something that you don't want to see at all
I'm a good boy I swear
But it's a dark world out there
So do yourself a favor, don't go looking at the pictures on my phone
This verse from troubadour John Craigie's hilarious song “Pictures on My Phone” about modern flirting habits always comes to mind when I reach a certain point of my morning and nightly routine, but not why you might think. As a high quad with an extensive history of pressure sores, I’ve filled the “Hidden” photos album of my iPhone with graphic pics of my undercarriage from all sorts of angles and zoom factors that I’ve cultivated over the last decade or so.
For a guy who didn’t even allow photos of my face for years after I got hurt, you could say I’ve swung the pendulum to the backside of the spectrum.
It’s all part of a larger system of vigilant documentation of all facets of my ongoing recovery that has helped me go from a stagnant shut-in for nearly all my 20s, to the rich, meaningful and happy life I have as a father, husband and nonprofit leader riding a dozen-year streak of relatively good health. (Quick! Somebody with hand function, knock on wood! Thanks.) | |
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| For the first seven years after the 2004 snow skiing accident that left me with a C3-4 complete injury, I spent nearly half my time in bed with pressure sores that I never once saw. Amid an already suffocating depression, I let my wound nurses and family handle the nitty-gritty details of treating, packing, dressing and vacuuming my sores. | |
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| The author, Kenny Salvini, shortly after his spinal cord injury in 2004. | |
It wasn’t until a random connection with another quad in 2010 introduced me to the RIDE Designs Custom cushion that ultimately would get me healed that the fog of denial finally began to lift. Back out in the world with a new lease on life, I knew I had to take ownership of all aspects of my care. With the revolving door that is caregiver turnover, the only consistent set of eyes I could rely on was my own.
When another sore popped up on my rear end in 2014, I knew I needed to track it in some way. Taking daily photos each morning and night helped me see its progress (and regression) over the entire summer until I had quite the stop-motion video of what it looks like to heal a sore. It wouldn’t be long before I would adopt a similar approach to tracking other aspects of my self-care routines to try and benchmark my health. | |
| YOU GET OUT WHAT YOU PUT IN | |
Having a gastric tube shoved up your nostril and down your throat has a way of grabbing your attention. It was March of 2017, and I was on my second or third hospitalization for suspected bowel impaction.
My neurogenic bowels had been a moving target for years, and we really couldn't tell what was causing me to have prolonged bouts of constipation interspersed with massive blowouts, oftentimes coming, embarrassingly, in public. After a few days with hospital staff attacking things from both ends, I resolved to expand my documentation protocols.
It started with a simple spreadsheet to track my input and output. I chronicled both my intake of food and water each day, while tracking various aspects of the morning routine, including bowel movement amounts, size, texture, the occasional photo of anything anomalous, plus any extra notes.
My wife, Claire, and I tried all sorts of diets — including gluten-free and the no-sugar, no-grain, no-dairy Whole30 protocol (to which I added no sunshine, no hugging, no smiling) — and I kept rather detailed notes.
Nevertheless, my bowels continued to shift right along with each experiment without revealing a consistent trigger or solution. Fortunately, my incessant tracking revealed another underlying trend that also needed to be addressed. | |
I’ve battled with urinary tract infections pretty much my entire paralyzed life. It’s an inevitable side effect of having a catheter, and my switch from traditional indwelling to a suprapubic in 2007 was not the panacea I’d hoped it would be.
I hit an all-time low in late 2010, just weeks after my pressure sores had healed. I flatlined in front of my family after MRSA made it from my bladder to my kidneys to my bloodstream. It took a full five minutes of CPR to bring me back, and I spent another week and a half in a medically induced coma while my loved ones waited to see if I had permanent brain damage.
A week after getting discharged, I wound up in the same emergency room with a minor infection scare and got the same doctor who’d given me CPR. Pointing at my 25 oz. adaptive water bottle, he asked, “How many of those are you drinking a day?”
“I don't know,” I replied, “maybe about one or so?” He was aghast.
“You need to drink at least four!” he said, emphatically.
I started following his orders the very next day, drinking four bottles (roughly 3 liters) a day, and my rate of UTIs dropped dramatically — from every few weeks to a matter of months and even years. For a while, that is.
In late 2017, the infections started coming back, from about one a year to almost every six months. Consulting my trusty spreadsheet, I spotted the culprit: any time I dipped below 3,000 ccs of urine output for three or more days, whamo! Infection city.
To stay safe, I upped my intake by another bottle to five a day, which worked for a while, but I’ve had to incrementally up the ante every few years. These days I’m up to six or seven bottles per day. It's not easy, and oftentimes I'm pounding nearly 2 liters before bed, but if that's what it takes to keep those pesky little creatures at bay, so be it. Making pee has turned into a full-time job. | |
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| Salvini, shown here with his wife and daughter, is riding a dozen-year streak of good health. | |
Of course, I’d be remiss if I claimed all these ideas were my own. The X-factor behind my finely tuned system is the massive community of folks with mobility disabilities I’ve tapped into as co-founder and Executive Director of The Here and Now Project. I’ve been chasing people down in parking lots ever since that first encounter with the quad who introduced me to the cushion that got me healed because I never know what I might learn from the next person I meet.
My longtime friend, and straitlaced Tech Titan Todd Stabelfeldt, first gave me the idea to take photos of my sores to “Maintain the Machine” as he says, and our mutual BFF and all-around Trail King Ian Mackay reminds both of us to “Get Outside” regularly for some vitamin D and the overall healing power of nature.
In 2014, I desperately needed someone to take a look at my seating and positioning. I called my friend Marty, a C7-8 quad who worked as an ATP for one of the local DME companies. He referred me to a physical therapist who’d been married to a para for 30-plus years. The PT diagnosed my issue of anterior pelvic tilt within seconds of our first meeting. She pulled my knees out an inch toward my toes and shifted my armrests forward and I was healed in a matter of weeks.
When I was looking to overhaul my diet, I reached out to Ian, a C1 quad whose wife, Nicole, had recently become a nutritionist. She prescribed a protein/collagen smoothie to boost my skin integrity and added a shot of flaxseed oil to the mix that has my bowel program more consistent than ever.
Having access to others in similar situations lets you benefit from the wisdom they have gleaned over the decades of collective experience so you don’t have to deal with the same setbacks they’ve had, thus leveling up your recovery like a classic video game cheat code.
And if I ever feel down in the dumps about life, I can hit the closest monthly H&NP gathering, whether it’s in-person or online. Meetings let me unload whatever is on my mind or heart with others who understand where I’m coming from and can help me shift my problems into a different perspective.
After all, life as a high quad isn’t always easy. By taking a more systematic approach to its inevitable challenges, I’ve been able to maintain an unprecedented string of good health into the backside of my mid-40s. It’s allowed me to focus my time on being a husband and father while juggling the responsibilities of running a nonprofit.
Just do yourself a favor and don’t go looking through the pictures on my phone.
Addendum: Claire would also like to point out that my 12-year streak without a sore also coincides with the time we’ve been together. Thanks, babe. | | |
