The story is told of two wood-choppers who went to work in the forest. The first worked tirelessly from sunup to sundown, and felled a good number of trees. But throughout the day he grew increasingly irritated with his fellow who left for ten minutes of every hour. Even though the second spent less time swinging his axe, at the end of the day he had chopped more wood than the first.
“How is it that you get more wood chopped when you keep leaving the job?” wondered the first wood-chopper.
The second replied, “I leave to sharpen my axe.”
The recent Mission Possible: Sailing For Solutions cruise conference was an axe sharpening time for me.
There were two take-home messages for me from this conference. No, make that three.
First, Linda Kane (Hope and a Future) used pictures for the first time to speak about the last years of Scott Kane’s life. Scott was about 15 years older than Mary and I had followed his achievements closely. His story was inspirational. He didn’t begin ND until he was 10, and didn’t begin using nutritional intervention until he was 14. Yet, as a young adult his auditory digit span was 7, and he was able to ride his bike to work and do a man’s job as a janitor at an elementary school. Mary was younger, started nutritional and ND intervention earlier, and I wanted at least those achievements for her. Then Scott died in 1996, in his late 20’s.
The day I heard that Scott had died in his sleep, I wrote this.
I keep looking at Mary and thinking, What if….? I don’t know when was the last time I thought about Mary’s mortality. She is just so alive. But, so was Scott. I thought we were over the part where DS just up and kills people. I thought we were looking at 50 years at least for Mary. I’m in emotional shock.
What my mind was shouting but what I couldn’t say to Linda at the time was, WHAT HAPPENED!? And HOW DO I KEEP THAT FROM HAPPENING TO MARY?
I’m so thankful that at the cruise conference Linda risked reopening her grief and told about Scott’s last years. She showed photos of a handsome young man, short and a bit stocky. Then a year later, another photo, a bit more stocky. The next photo would have to be called overweight. And the photos progressed to a clearly overweight man in a wheelchair. Linda described Scott’s fight against weight gain, in spite of an intense regimen of weight loss dieting. She told of his decreasing energy, that he lost his job, and finally was unable to walk. Then it was all over–and he was only in his late 20’s.
Then Linda told of being given the book, Hypothyroidism Type 2, by Mark Starr. When she finally built up the courage to read the book, she realized that it described exactly what had happened to Scott in his last years, and what had finally taken his life.
Why was Linda’s story such an important part of the cruise conference for me? Because, in Linda’s photos of Scott, I saw Mary. Three years ago Mary (4’10”) was a svelte 98 pounds. Today she fights to keep her weight under 125. No matter how hard we try, her weight keeps going up and up. Could it be that Mary’s problem is not calories and eating, but that her mitochondria are not responding to the thyroid hormone that we are giving her? And is there another solution to her trajectory other than nagging her about her eating?
I’ve said in the past that “DS is not a tame disease.” You don’t get a handle on it and then coast through the next years. Nope. Trisomy 21 is constantly on the prowl and as soon as I relax my guard it finds an opening and comes roaring back in. Linda Kane, through sharing Scott’s story, gave me weapons to continue to fight for Mary.
The second take-home from the cruise conference was information gained from a reflex assessment. Three specialists with Masgutova Neurosensorimotor Reflex Integration explained the effect that non-integrated primary reflexes can have on later development. They spent an hour with Mary to assess her primary reflexes. And I learned that Mary has not integrated her Fear Paralysis Reflex. The FPR emerges in the womb and probably helps the mother deal with threats. If baby freezes, mother is not distracted and can focus on the danger. But, the reflex is supposed to integrate before or shortly after birth. If someone has not integrated that reflex, events would trigger irrational fear resulting in the muscles freezing up and the person becoming unresponsive if even for just a few seconds.
Having a non-integrated Fear Paralysis Reflex explains some of the behaviors that we see in Mary. Poor kid! Imagine living your life with events constantly triggering reflexive fear and freezing up! Knowing that it is reflexive is soooo helpful. No more trying to reason with Mary or teach her logical responses to what she perceives as threats. That would be like trying to teach her not to blink when someone throws something at her eyes. Logic isn’t going to solve it. All this would be fairly useless information except that I also came away with exercises to integrate that reflex into her mature nervous system. YAY!
The third take-home was that glutathione (GSH) is a big deal. Yes, I’ve known about glutathione, and have even spoken about it, but this little molecule kept popping up in presentation after presentation on that cruise. Glutathione plays into a good bit of the pathologies associated with DS. So, I need to revisit some recent research about GSH and its relation to DS. This will probably result in changes to Mary’s supplement protocol.
So, I stepped away from my routine for five days to attend the cruise conference. As a result, I may have found the way to step Mary off of a downward health pathway, found an explanation (and solution) for some of her inexplicable behavior, and found research relating to glutathione that can be applied to Mary’s supplements to keep her healthy.
Yes, the axe has been sharpened.