20 November, 2024
I haven’t written in almost a week ― largely because there’s little new to add. The appointments are made … as of today, the paperwork is completed … we’re almost, almost in the phase where we have nothing left to do but wait. And wait.
Dave and I just got back from the GP’s office, and I can’t praise Dr Tim highly enough. He is The Best. In all honesty he’s the only medical practitioner I trust to lay a finger on me. He gave us oceans of time to wade through a stack of documents (about six ordinary appointment slots, when we’d booked two), and he’s doing everything in a GP’s power to make sure Dave is well taken care of. NDIS. Insurance. Centrelink.
It was … well, it was bloody hard work. I held it together until the end, when Dave invited me to suggest what I, myself, needed. Prescriptions ― the usual, same every year. I’d written the list to make sure I didn’t forget one. Bottom of the list, I wrote, “Something for extreme anxiety, profound fear, and sorrow.”
Long story short, he wants to see me ― me ― again. Friday, noon. I guess he noticed how the stuffing has begun to escape through my seams. To be fair, I held it together till the end. And Dave was ― he was Dave. I swear, he’d find something to joke and smile about on the darkest night, in the deepest part of the Wild Wood.
The Wild Wood is a metaphor, as anyone who ever read The Wind in the Willows knows. It’s the realm of your deepest fear made manifest. It’s the struggle to confront that fear, the battle to not let it overwhelm you … the belief that someone will come find you, help you, and there’s a refuge, a safe haven, up ahead, where you can rest and recover before you find a way to go on.
Well, from here on, we’re well and truly in that Wild Wood. We’re in territory that has been well charted, and the path ahead is worn smooth by about a million pairs of feet, all pattering, lemming-like, in the same direction. Naturally they’re playing follow the leader. MND is incurable, so ― why bother trying? “Make me comfortable, hold my hand, help me through the next year. Or two. Before…” Yeah. Right.
Not good enough. I run back to the statistics, medians and averages. 30% of patients are gone in the first year, for whatever reason, which skews the numbers massively. It’s equally true that 10% of patients are still alive in 10 years. Now, what did that 10% do that the others didn’t? Because, sure as the sun rises in the east, they did something.
Well, we’re doing everything. Yes, the one and only MND drug that’s approved by the TGA in this country. But also, nutrition, supplements, Kriya, Qigong, meditation, exercise therapy, and ― beginning in one week ― acupuncture, which is reported to work its own minor marvels. Add all that together, and … what?
Okay. Dave did a full routine with his weights this morning, and went on a bike ride too, in the heat. And at the end of it all, he wasn’t wasted ― in fact, after the medical ordeal, he’s in far better shape than I am. So, am I seeing positive results? Is it too early to tell? Who knows? But I know what I hope.
Only time will tell, and this is where I began: it’s the waiting that gets me. We’re working hard to keep his weight up. Cooking alone is a fulltime job, but he’s enjoying his food. Smoky Taramosalata, and walnut-peach-coconut cream for dessert, for lunch, for instance. You have no idea how many calories I piled into that! And it’ll be a massive bowl of mocha cream for dessert after a large, high-protein dinner. If his weight is stable (it is), and the exercise is maintaining his strength at acceptable levels, and the Kriya is keeping his breathing good … are we cruising?
For how long? Again ― who knows? It’s a waiting game from here on, while we pick our way through the Wild Wood, watching out for eyes in the darkness and listening for the clash of fangs. It’s scary out here.
There’s little to add. Day to day, nothing changes, but when the NDIS paperwork clears, Dave’s old mate Groot will be converted to an ebike ― he’ll be out and romping it again. (Next: a high-top van, something like a Toyota HiAce … and I must learn to drive it safely. Looking ahead, just in case: if Dave needs scooters and wheelchairs in a year or three or five, and if we’re still going to get out and go places, we’ll need a vehicle to carry the hardware. So, we might as well get a jump on this and let me do this well.)
But that’s for the future. For the moment, it’s just two more appointments to scramble through, then … well, I’m going to put up the Christmas tree and see if I can’t organize a nice Christmas for Dave, Mike and myself. Who says you can’t decorate a tree in the Wild Wood?
I haven’t written in almost a week ― largely because there’s little new to add. The appointments are made … as of today, the paperwork is completed … we’re almost, almost in the phase where we have nothing left to do but wait. And wait.
Dave and I just got back from the GP’s office, and I can’t praise Dr Tim highly enough. He is The Best. In all honesty he’s the only medical practitioner I trust to lay a finger on me. He gave us oceans of time to wade through a stack of documents (about six ordinary appointment slots, when we’d booked two), and he’s doing everything in a GP’s power to make sure Dave is well taken care of. NDIS. Insurance. Centrelink.
It was … well, it was bloody hard work. I held it together until the end, when Dave invited me to suggest what I, myself, needed. Prescriptions ― the usual, same every year. I’d written the list to make sure I didn’t forget one. Bottom of the list, I wrote, “Something for extreme anxiety, profound fear, and sorrow.”
Long story short, he wants to see me ― me ― again. Friday, noon. I guess he noticed how the stuffing has begun to escape through my seams. To be fair, I held it together till the end. And Dave was ― he was Dave. I swear, he’d find something to joke and smile about on the darkest night, in the deepest part of the Wild Wood.
The Wild Wood is a metaphor, as anyone who ever read The Wind in the Willows knows. It’s the realm of your deepest fear made manifest. It’s the struggle to confront that fear, the battle to not let it overwhelm you … the belief that someone will come find you, help you, and there’s a refuge, a safe haven, up ahead, where you can rest and recover before you find a way to go on.
Well, from here on, we’re well and truly in that Wild Wood. We’re in territory that has been well charted, and the path ahead is worn smooth by about a million pairs of feet, all pattering, lemming-like, in the same direction. Naturally they’re playing follow the leader. MND is incurable, so ― why bother trying? “Make me comfortable, hold my hand, help me through the next year. Or two. Before…” Yeah. Right.
Not good enough. I run back to the statistics, medians and averages. 30% of patients are gone in the first year, for whatever reason, which skews the numbers massively. It’s equally true that 10% of patients are still alive in 10 years. Now, what did that 10% do that the others didn’t? Because, sure as the sun rises in the east, they did something.
Well, we’re doing everything. Yes, the one and only MND drug that’s approved by the TGA in this country. But also, nutrition, supplements, Kriya, Qigong, meditation, exercise therapy, and ― beginning in one week ― acupuncture, which is reported to work its own minor marvels. Add all that together, and … what?
Okay. Dave did a full routine with his weights this morning, and went on a bike ride too, in the heat. And at the end of it all, he wasn’t wasted ― in fact, after the medical ordeal, he’s in far better shape than I am. So, am I seeing positive results? Is it too early to tell? Who knows? But I know what I hope.
Only time will tell, and this is where I began: it’s the waiting that gets me. We’re working hard to keep his weight up. Cooking alone is a fulltime job, but he’s enjoying his food. Smoky Taramosalata, and walnut-peach-coconut cream for dessert, for lunch, for instance. You have no idea how many calories I piled into that! And it’ll be a massive bowl of mocha cream for dessert after a large, high-protein dinner. If his weight is stable (it is), and the exercise is maintaining his strength at acceptable levels, and the Kriya is keeping his breathing good … are we cruising?
For how long? Again ― who knows? It’s a waiting game from here on, while we pick our way through the Wild Wood, watching out for eyes in the darkness and listening for the clash of fangs. It’s scary out here.
There’s little to add. Day to day, nothing changes, but when the NDIS paperwork clears, Dave’s old mate Groot will be converted to an ebike ― he’ll be out and romping it again. (Next: a high-top van, something like a Toyota HiAce … and I must learn to drive it safely. Looking ahead, just in case: if Dave needs scooters and wheelchairs in a year or three or five, and if we’re still going to get out and go places, we’ll need a vehicle to carry the hardware. So, we might as well get a jump on this and let me do this well.)
But that’s for the future. For the moment, it’s just two more appointments to scramble through, then … well, I’m going to put up the Christmas tree and see if I can’t organize a nice Christmas for Dave, Mike and myself. Who says you can’t decorate a tree in the Wild Wood?
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