Dave's Last Ride

2nd November 2024

Cheers to my One and Only -- the indomitable Dave Downes, who is out there on "Dave's Last Ride," with his cycling mates from the last decade of so, the "golden years" ... reliving the memories, recalling the good times, having fun. I'm so proud of him! Were you ever so proud of someone that your heart doesn't quite fit in your chest? Then, you know the feeling.

 
You also know me well enough by now ... I'm the eternal bloody optimist. I'll go this far: "Dave's Last Ride ... For the Next Several Years," until University of Sydney, or Sheffield University, or The Florey Institute -- whatever, whoever, wherever -- come up with answer to this thing. MND will be beaten, Dave will be there to see it beaten.

 
This story will have a happy ending, when he gets back on the bike and rides away. No one can say exactly when, but I'll close this post with a quote from Bruce Lee, who was wise beyond his years. "When you say that something is impossible, you have made it impossible."

 
Nothing, but nothing, is impossible, unless we make it so. And life is one big possibility ... if we will only allow it to be. Go, Dave!!!

Hanging on Tight

1st November, 2024

Diwali and Samhain (Halloween) fell on the same date this year … the Festival of Light and the western Day of the Dead, on the very same night? Bizarre, but there it is. We didn’t celebrate either. I couldn’t find the energy or motivation to celebrate Diwali, and couldn’t see any fun in a celebration of death and decay. So, for this year we left both alone. Best wishes to my friends, kith and kin, no matter which you were celebrating. I’ll see if we can join you next year.

It’s difficult to find an angle from which to approach today’s post, because I’m divided, looking for middle ground. I want to say, first, that the staff at the MND clinic at Flinders are the absolute best. I’ve never met a group of medical specialists who are so human, pleasant, and welcoming. Doctors can be officious, arrogant, deaf, dismissive, impatient, even irresponsible, but the team at the MND clinic are some of the nicest human beings it’s ever been my privilege and pleasure to meet.

 
We got through “Hell Day” ― three specialists in one day, with some tests that were physically exhausting to perform, and also to watch. Knock on wood, Dave’s numbers are better than expected … the life legacy of having been an athlete. His lung capacity is still better than that of an average man, especially of his age. We’re also managing to get his weight to tick up, infinitesimally slowly. A neat trick in the face of hypermetabolism, which is a knock-on effect of this beast of a disease. I’m filled with ideas for ways to pile calories as well as the nutrition into his food ― also filled with questions for the GP, whom we'll be seeing very soon. (Why in the world can’t hyperthyroidism in MDN patients be treated the way this metabolic disorder would be treated in other patients? Doctor, darling, do you really mean that in 2024 we still don’t know what causes it? Can you grasp how this process of “we still don’t know” is obliterating my faith in science?!)

Dave’s lung function numbers are more than good enough to qualify him for the one and only drug that’s been approved here. And we checked its price, and it’s affordable. His specialist is out of state till the end of the week (tomorrow?), then we should get a call to collect a prescription. Over the first hurdle, and thanks to Xiao for making the tests as doable as possible. (Relative term there, but still.) Next?

We spoke at length with the nutritionist, and got an A1 rating from Amy. We’re doing it right so far; we shall continue to do it right, and I hope to be able to get Dave’s weight to tick up significantly. This bears directly on “length of survival” …

And here is where I run into the brick wall, hit that division, the dichotomy in my thinking. Since western medicine has nothing much to offer for this particular autoimmune monster, we looked elsewhere, and found quite a lot. There’s research that will take a decade to be verified to the satisfaction of scientists (the vast majority of whom aren’t sufferers, nor do they have someone at home waiting for a cure, so there’s no sense of urgency. The work is performed at glacial pace, while funding has, till recently, trickled like a leaky faucet). So, we optioned a lot of research that’s so new, or so out-of-box, you won’t hear any of this from your specialists. Not a syllable.

 
But we’re doing it, and because we’re doing it, we have hope. No, I am NOT in denial. Denial is the blind alley where you run and hide because you can’t face the truth. Hope is where you read, take knowledge from brilliant researchers, grab whatever you can find, and MacGyver your own solution from bubble-gum, paperclips and duct tape.

Hope gives you a reason to get up in the morning. It provides a reason to plan for next year, and look forward to possibilities instead of starting (prematurely!) to wallow in memories. The time for that may well come; the odds are against us. I admit it. It’s probably a one in a million chance that we’ll win ― but those odds come up every day. The odds of winning the lottery are longer, but someone wins lotto every - single - day.

 
Yet, when you consult with your medical team, it’s there in their (kind, compassionate) faces: the belief, knowledge, certainty, that you have no hope, there is only one way this story ends, and the path is not long. They probably believe they’re doing the right thing, preparing everyone involved for the inevitable appointment with the funeral director. It’s not their fault: it’s in the western mindset, the education, our materialist protocols. First, in everyday life, we hide death away like it doesn’t exist, then we (kindly) consign people to it when it suits us. Huh.

It takes a strength I didn’t know I had to let this compassionate, well-meaning nihilism bounce off me, roll off like water off a duck … go home, get my sleeves rolled up. Because nobody outside of the medical world has given up on Dave ― not yet. Not while there’s something to work with, and solutions to at least be tried along the way.

 
So, as Diwali/Samhain/Halloween passes by for 2024, unmarked by our house … good wishes to all for a brighter 2025, and a bright future for the world.

Hitting Every Pothole in the Road

27th October, 2024

This is becoming a journal, and I’d love to chart our progress through the labyrinth of motor neuron disease, but on a day-to-day basis at least at this stage, little or nothing happens ― not physically or visibly. It all happens in the strange, claustrophobic little space inside one’s own mind. It’s all about what you imagine, and what you fear.

 
This is a journal of my own journey through the labyrinth, as well as Dave’s. This is where I record what I feel, day by day. Dave himself is doing pretty well at the moment. He’s holding it together and has just posted his official “Last Ride,” inviting old cycling mates to come and "tootle" with him and celebrate the memories. Cheers to him, and to all. Let it be a fantastic afternoon, one to remember forever. But my own little world is not so bright. I feel that I’m starting to lose the battle long before he does.

Tuesday brings another battery of tests. One is critical: Dave must pass the lung function test in order to qualify for surgery to fit the PEG (from medlineplus.gov: “A PEG (percutaneous endoscopic gastrostomy) feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall. It goes directly into the stomach. PEG feeding tube insertion is done in part using a procedure called endoscopy.”)

 
That sounds simple enough, save for the inevitable warnings about the hazards of surgery. Any surgery. Want an ingrown toenail fixed? Hazard. Huh. But the underlying “omigod” moment for Dave and me, and for Mike, is that the surgery may not be approved. If Dave fails the lung function test, they won’t do it. What happens then? [My stomach turns over; I feel weird; see sparkles in my vision] Well, he continues to take his food in liquid/puree form for as long as he can continue to swallow. And as the MND progresses, and he can’t swallow…

That fear lives with me, an unwelcome lodger in my mind, and will for the next couple of days. I have to believe he’ll ace the respiratory test. I have to believe he’ll come through the surgery with the proverbial flying colors. There’s no other option, right?

Have a little faith. But fear seems to have taken root in my mind; my imagination is running away at breakneck pace; I can’t stop it. Does everyone in this situation go through this phase, or is it just me? This isn’t about grief ― or even about sorrow. It’s simpler than that. It’s about dread.

Dave is already in middle-stage MND, not early stage. We wasted the early stage, calling it long Covid, expecting him to recover while 50% of his lung capacity fell away. This beast only has three stages, and the battle, now, is to see if we can use “alternative” means to force it into remission. I say alternative means, because orthodox medicine has nothing to offer. Nothing. Before we knew it, in less than a month, we went from “When’s Covid going to quit?” to “You’re middle-stage of a disease for which there is no cure.

 
Yes, my mind is still reeling. Yes, I’m still caroming from wall to wall, hunting for solutions, looking for ways to just slow it down, while we wait out the years for a medical breakthrough. But it comes down to needing that PEG to make the distance. Without that, well … yeah.

And the second fear continues to haunt me, every moment: homelessness. It turns out that the charity, MND SA, can find suitable housing for us, but only till Dave leaves us for pastures greener and new roads to ride. Then, the widow is out the door, in an environment where there are no affordable rentals to be had, no social housing, no provision for people like myself. Fact: the fastest growing minority in this country is women over 55, living in cars.

 
Terror seizes me by the throat and squeezes. I’ll share a small secret here. All my life, I’ve had one real fear. For some people, it’s spiders, rats, snakes, heights, the dark, all of the above. For me, it’s always been the fear of being homeless, and particularly old and homeless. The feeling of waiting desperately for someone to come and rescue me is back. So is the knowledge that no one is going to come. I must figure this out myself.

 
No available housing, so ― motorhome? I can’t drive something the size of a truck! So, learn, damnit! Come on, woman, you’re not that old or frail. Get a grip. Your grandmother was born in a Romany caravan, circa 1899 (seriously), there’s Romany blood in your veins. Make sense of this. Do it! Learn!

The First Battle in a Long War

23rd October, 2024

You don’t win a war in a day or a week. A war is made up of dozens, perhaps hundreds of individual skirmishes. Acts of heroism, moments of despair, dark nights when you wonder if the sun will ever shine again, wounds that take time to heal. And throughout it all, a course you keep trying to steer while a storm batters you, trying to dump you into a whirlpool that’ll take this metaphorical boat to the bottom.

Yesterday was, I think, the hardest day ― yet ― of my life, and I imagine Dave would say the same. It was a battle, and a battle we lost. Hope endured until the last possible moment before turning to ash. No other diagnosis possible. It’s official: Dave has Bulbar Onset Motor Neuron Disease. The prognosis is (I’m not totally clear about this) either three years from time of diagnosis, or three years from onset of symptoms. His symptoms go back more than a year, so … you run the numbers.

Against this, you have Dave’s innate strength, the athlete’s robust constitution, a will to live, a zest for life … a family that’s fighting with everything we have and know … and I must add, a medical team that’s turning out to be solid gold. The staff at the MND Clinic are beautiful. They’re not merely professional, they’re compassionate, kind, human. I can’t praise them enough.

Yet at the end of the day, all the compassion in the world won’t change the diagnosis, or the prognosis, so hope will have to change direction. Now, it’s not a question of running with a less devastating diagnosis. We’re just playing for time, all the time we can get, by trying to slow the progress of this beast.

The deterioration has been frighteningly fast, but I’m told MND progresses by “steps and stages.” One can stabilize at a certain level before dropping down to the next. If you stabilize for long enough, we’d call it a remission. Do people with MND get remissions? Apparently, it’s not unknown, but it’s rare. And those remissions are usually in the order of three months. A year would be exceptional.

What am I feeling? As if I’m spinning out of control. Fretting, feverish yet cold, hypervigilant yet forgetful … searching the literature for hints about alternative treatments ― long shots but worth a try. And at the same time admitting to myself (and Dave knows this) that I must brace myself. So, what do I feel? Not grief (yet), but ... sorrow. ("Are you flesh or spirit?" the boy asked. She answered, "I am sorrow.")

Can we stretch two years into five? Will the athlete’s strength and determination provide that “extra something” that makes the difference between the person who decided to give up, and the guy who didn’t? Will the extra years be good years? Can I make them happy and fulfilling, make the days worth the effort it takes to live them?

These are hard questions without answers. There’s only one thing I know for sure. So long as Dave has quality of life and is having fun ― we go for it. But (and I’ve told him this) I don’t want him to suffer. If it’s all going to go massively wrong, let it be over with as little suffering and as much peace and love as possible.

Fear is the shadow that walks with me through every day. It takes a combination of Diazepam and beta blockers to make me sleep for five hours. Eating is a chore; food tastes like mud. Fear is my companion. My enemy. It paralyses you. Takes way your ability to reason. Like a lost child, you spin around, waiting for someone to come and rescue you … but this time, no one is coming.

I have three fears. The first is homelessness while Dave is increasingly incapacitated. We’re in a rental, and you can’t depend on a rental to be there for you next year. We have six weeks to sweat through before we’ll know if we have a place to live next year. Sweet, isn’t it? Oh yes, that’s fear, because in this housing crisis, there are no other rentals; nowhere to go. The second is the fear inspired by watching my father fade away with lung and brain cancer. Imagining Dave in his predicament is ― well, beyond what my sanity can tolerate.

The third fear is the most human, and commonplace. Simply the fear of the empty place he’ll leave behind. The long loneliness before my own turn comes. It comes to us all. That Rainbow Bridge is on the horizon, from the day we’re born. We all walk across it; it’s not optional. But I thought it was years and years away … not so close. So soon.

Next Tuesday will be another blizzard of major tests: three in one day. Two were exhausting, yesterday. Tuesday will be a reenactment of Iwo Jima. Is it a battle we can win? Probably not, because these skirmishes aren’t winnable: it’s about drugs that don’t quite work, and learning to speak in sign language, for the day his voice is gone altogether, and having a PEG, so he can eat and drink at all. Next Tuesday will be … awful. There’s no other word for it. Yet this is the road ahead. We must walk it. And we’ll walk it together.