The Journey Begins

D-Day + 4 … how am I doing? (That’s Diagnosis Day, and it broadsided me with all the force of the Normandy Landing, so the term is actually fitting.) I’ve had three straight days of an ongoing panic attack, ice cold, shaking from head to foot ― hardly able to stand ― and inclined to cry without warning, and cry for a looong time … Today, I’m almost over the crying part. Not quite. The tears still come, but not quite as often, and I can get them under control faster. It’s not healthy to shut them in, bottle them up, but the blind panic has to stop at some stage or ― without exaggeration ― I’ll damage myself. So ―

Four days on, and I’m more rational. The work has begun in earnest to halt, or slow down, the ridiculously fast progress of this disease. I hadn’t realized Dave’s condition had deteriorated so far, so fast. It’s only taken six months and his athletic performance is probably eroded by about 60%. That’s dangerously fast. So fast, it scares me rigid every time I think about it.

What do I feel? A crazy blend of fear and sorrow. The grief is anticipatory. There’s no need for it yet, but the mind leaps to the most obvious conclusions and you just can’t stop it. So, like any process of grieving, you let it run its course ― and it does. I’m not saying that I won’t spontaneously cry in a week, a month, a year, but I believe I’m rational again. Thinking. The fear is much more difficult to defeat. It’s the fear of being left behind. Separation. Anybody who ever lost a loved one knows exactly what I mean; no need to belabor the point. But that fear is very real, and it’s like a paralysis that invades body and soul. It also passes, but for those minutes, it’s pure torment.

The only defence against the fear and sorrow is action. We’re trying ― weeks ahead of getting a shred of help from any specialist. The inequity of the situation is that this disease progresses to fast it’s frightening, and yet you wait weeks for tests and an appointment with whatever specialist … it’s as if the specialists have already accepted that nothing can be done, and they’re just there to “make you comfortable while you fade away.” Well, nuts to that.

Next step: research. What can you do? What can you take? How does exercise work for MND? What makes it worse? Is MND one of the autoimmune diseases?

Many things have already come out of the research, and I’m guardedly hopeful. No, I’m not indulging myself in denial, which is a bind alley in which one hides, hoping to wake up from a terrible dream. But rest assured, research continues apace ― not so much in the US, where government funding has, frankly, sucked, but in Australia, Japan, the UK, and doubtlessly other countries too.

Is there hope of an eventual cure? Yes, there is. University of Sydney is very optimistic indeed about a complete cure “inside of a decade.” So, our challenge, and our ambition, is to find ways ― any way, every way ― to retard this disease to the point where its progress is slooooow, and Dave will be around in 2034 to take the cure, take the rehab, get back on the bike and ride away.

What are we doing? Nutrition. Exercise. Weight lifting. Cycling (not to the point of exhaustion). Specific breathing techniques (have you heard of Kriya Yoga? Look it up). Balance exercise, like Qigong. We just got a tip regarding the link between gluten and autoimmune disease, and when I chased this up, I soon discovered that two separate studies have very recently identified definite pointers to MND being autoimmune.

It’s as if Dave’s “autopilot” has broken down. Speaking, swallowing and breathing are things most people take for granted … they’re automatic. Well, one day they stop being automatic, and you have to “fly this bird on manual.” Think about your breathing and swallowing. O…kay. It’s not the most fun thing in the world, but he can do that. And when he does ― with a Kriya “cycle” between swallows if necessary ― he’s actually swallowing and breathing quite well. At least, that’s what I see, as I watch.

We’re in the process of rearranging the house to make things easier. He’s just changed to an electric razor. Bike ride this morning, and no lousy aftermath … massive amounts of nutrition, and a genuine uptick in his energy levels. There’s more that’s already being done … and more that will be done in the coming days, weeks, months.

So ― guardedly optimistic. I can definitely see an improvement in Dave after a huge blast of nutrition and … “other stuff.” What can we actually achieve? I honestly don’t know, but if you don’t try, the result will be nothing at all. What’s the goal? To “wind back” Dave’s condition by six months, or even three, if that’s the best we can do, and then hold it there for as long as we possibly can, while we wait for the monoclonal antibodies and the stem cells, and the new drugs, and all the rest.

The path will take years to tread, but the journey has begun.