I should have died in 2009! And I probably would have if I'd listened to the neurologist at St. Elizabeth's Hospital in Boston. If we had taken his words to heart, taken them as fact rather than an educated guess, I'd be dead! If I had let his words, "I'd say you have 18 - 24 months to live," soak into my brain like a toxic chemical spill on pristine marshland, I'd be dead! But, in the parking lot outside the hospital on that cold December day, my wife, Linda, and I made a pact that we wouldn't let the words of any man, regardless of his scholarly pedigree, dictate the rest of our lives.
And I'd be dead if we had followed the course of action of my first neurologist here in Maine: "There's nothing I can do until you're faced with the choice of going on a ventilator," he said at what would be our final meeting (although, he didn't know that.)
When we told friends and family about my diagnosis, the reactions ranged from "What's ALS?" to "Well, you'd better get your affairs in order, fast." All sincere and heartfelt reactions, but no one offered the one thing we really needed – hope. Even people at church would say, "We will pray for you - but you know, there's reality to face too." No one offered the kind of hope that we felt in our bones. We lean on the Biblical definition of hope, not as wishful thinking, but as the confident expectation of something good. Again, if we'd have received those dismal thoughts and adopted those attitudes as our own, I'd probably be dead!
It wasn't until we found the ALS Multidisciplinary Clinic at Mass General Hospital (MGH) that we interacted with mainstream clinicians who were on the same "Hope Track" as us. During our first meeting with this amazing team the male nurse who was doing the intake and verifying medical history told us, "We're here to help you LIVE with ALS." He was taken aback when we both choked up. We had finally found our second home.
In spite of the dire prognosis we'd received in 2007, my disease progressed slowly. Although I lost functional speech in 2010 I was able to eat by mouth all along. A major focus during my quarterly visits to the MGH Clinic was maintaining body weight or even increasing it. Multiple studies have shown that pALS (persons with ALS) have a longer life expectancy if they maintain a slightly higher-than-ideal body weight. By the summer of 2012 my ability to eat at a near-normal pace became more of a challenge. I was keeping meticulous track of my daily caloric intake using the MyFitnesPal app on my iPad. I was taking in at or above 2600 calories a day, but by Christmas of 2012 I was spending most of my waking hours just eating. It was time to talk about a feeding tube.
Our next ALS Clinic appointment was in January of 2013. The decision to undergo the feeding tube procedure was confirmed by the team at MGH and was scheduled for later that month. I had the surgery with just a local and some Valium. We had “gone to school” on the experiences of pALS who had undergone the procedure under general anesthesia. Too many, for our comfort, had extended post-operative stays and even complications.
After an overnight stay to ensure the tube was operating well and for a "Feeding Tubes 101" crash course from a nurse, we were home with a case of commercial formula. Being novices to enteral feeding we never questioned whether there were alternative choices. We trusted the hospital dietician's choice. A mistake we wouldn't make again.
Within a week, I started having severe gastrointestinal issues. Over the three months to follow, I would make four trips to the local ER. We heard varying opinions from the local clinicians, from the popular "You'll just need to make friends with it," to "It’s just the disease progression." We were back at that place of no hope!
Linda is always thinking. Always reading and communicating with other caregivers. She ran across information on a small company in Ohio making a formula called "Liquid Hope.” Now we're people of faith. We'd seen God move on our behalf before and had no doubt this was another sign from above. We emailed Robin Gentry McGee, founder of Functional Formularies, the company in Ohio, and spoke to our visiting nurse, who, after reading the ingredient list was very supportive of trying this. Finally, after 3 months of gathering insurance referrals from doctors (my PCP and neurologist by now trusted that we had done our research and were very supportive) and making the case to my insurance, they approved the move to Liquid Hope.
It took only a few days to feel the difference. Gastrointestinal issues disappeared. The grogginess I experienced on the sugar-laden formulas went away. As a matter of fact, I had a renewed sense of energy. During our next visit to MGH I had gained 5 pounds. Over the three years I've been using Liquid Hope as my sole source of nutrition my blood work has been perfect, and I've maintained my weight: 185 pounds. We believe it's saved my life.
When I say, “it's saved my life”, it's not hyperbole and I am not trying to sell anyone the idea of following my path. But we DO know that the long list of voices who spoke of my imminent demise were wrong. They were wrong, at least in part, because we refused to receive their words.
Yes, I should be dead! But I'm not! I'm celebrating the ninth ALS Awareness Month since my diagnosis. Not in spite of the many people who heard the acronym "ALS" and translated it as "death sentence." We're convinced I'm here because those voices became irrelevant to our daily lives and we've made informed decisions, like the decision to change to Liquid Hope. But mostly, I'm here because my body and soul are being nourished by the word we've become associated with - hope.
No matter what trials you face, where there's life - there's Hope.
~ John Gregoire