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Sunday, October 1, 2023

Command Center Karen

Now that the news is out about the Quad Queen's ALS diagnosis, and the February Vegas trip report is completed, I can share more about what's going on in our world.

There's so much going on, so much I could write about, and I find myself staring at a white, empty screen.

ALS has progressed frighteningly fast. From the first symptom 18 months ago until now, it's been a steady downward spiral.

Up until we returned home last April 2023 from Florida, Karen needed help with cutting and preparing food, doing any tasks that require two hands, and some support walking.

Since then it's been a whack-a-mole of adjustments as her condition has worsened.

And I've never been so busy, or worked so hard, in all my life. The stress and worry is unreal.

There have been endless calls and meetings with health care professionals, doctors, nurses, occupational therapists, respiratory therapists, social workers, care agency managers, and on and on.

The paperwork has been immense. Everything from applying for a accessible parking permit, to government tax and Canadian Pension Plan statuses, to Ontario Trillium drug plans, to applying for equipment funding. And more. Lot's more.

Research, research and more research on ALS, treatments, disease management, drug trials, tips and equipment.

Beddy-bye command center Karen

ALS is relentless, and there has been endless rounds of problem solving as Karen's abilities have receded. As an example, take the need to drink water during the night. An adult sippy-cup on the nightstand worked for a while. Then she couldn't reach the nightstand. So I got a cup holder designed for a bicycle and attached it to the bedframe. Then she couldn't get the cup out of the holder. So we switched to a travel water bottle with push button operated pop-out spot. The bottle would stay next to her pillow. Then she couldn't lift the bottle anymore, and working the button was difficult. So I found a drink bladder with a hose and a 'bite to drink' valve on the end. It hangs from the headboard and the hose is pinned to the sheet. At night, she can just manipulate the hose enough to get a drink. It works great. For now.

And of course, caring for Karen herself, and running the household, finances, shopping, cleaning - the whole 9 yards.

Since the Quad Queen became unable to walk, we use a hoyer lift to move her around. There's a sling that fits around her and attaches to the lift. We call it a cape because it enables her to fly. Sort of. So it's bed to commode, later commode to wheelchair, then wheelchair to commode and back again as many times as is needed. A round trip to the toilet can take an hour, with no guarantee of a jackpot.

We get two one-hour visits a day from helpers - maybe. Many times visits are cancelled, or moved without warning to times that are essentially useless to us. We need those people in the morning, and at night. Not at 1:30 in the afternoon when there's not much to do.

I remember one weekend recently when we had nobody show up. At all. From the Friday through the Monday 6 of 8 one-hour visits were no-shows. Sunday was particularly busy with a lot of heavy lifting and by Sunday night, exhausted, I was in tears as I put the cape on my wife for what seemed like the 20th time that day.

There's no choice but to hire privately to shore up this arrangement. And in Florida, this will be a necessity.

We have some good family members and a wonderful neighbor supporting us with meals and companionship, but I wish there were more. We have no kids to lean on but sister Divana is not too far away and often comes out to help. And Karen's sister is a couple of hours away and a legend.

She's come out and stayed here a couple of times to give me a much needed break. She's amazing.

So what can be done the help ALS? There are a few drugs available that can slow down ALS in some patients. Like 4 of them. There are many being trialed, and many trials that have failed.

Breathing tests are required to be passed in order to get funding for Albrioza

Karen got funded for Riluzole, which is a fairly old drug, and started on it about three weeks ago. Fortunately, she is tolerating it well.

The new kid on the block is the hyper-expensive Albrioza (or Relyvrio in the USA). It's $150,000 USD a year.

About 10 days ago, Karen got the news we were hoping for.

Full funding for Albrioza!

A few days ago, a shipment arrived with a supply of the precious drug. The Quad Queen tried a very small amount of it just to see if she had any allergic reaction to it. No problem there.

Yesterday, she took an appreciable amount - about one fifth of a dose. This stuff has a track record of GI upsets as a side effect. It tastes horrid and you're supposed to take one dose a day for a couple of weeks and then ramp up to two doses a day.

Well, it's a good thing she did only a fifth of a dose. It was not tolerated well, and she GI'd all evening long. Clean up in aisle 2.

So at this point we aren't sure how or if to proceed with the Albrioza. Talk about being between a rock and a hard place.

I'm sure this is daunting and tiring to even read about and imagine, and probably some of you didn't get this far. It's not pleasant - but it's also not all bad.

Karen and I spend a lot of time together. A real lot. And we smile, we laugh, we joke, we still have fun. We talk about how lucky we've been in life and all the experiences we've had, all the wonderful things that have gone our way. We're grateful for some of the choices we made, like to get our retirement snowbird place in Florida, to travel when we could, and of course, to make some 60 plus trips to Las Vegas. No regrets on that one!

Here's an example. Karen can no longer feed herself, so I pull and office chair up next to her wheelchair, and put a towel on her to fend off and food that goes flying.

Every single time she pulls tips her head back and juts her chin out, looking like Robert de Niro getting ready for a barber shop shave. And every time I laugh. 

So how do you get a person that can't walk, can't feed herself, and won't give up - to Florida?

That's my next trick and I'm scared shitless.

In the old Las Vegas Club, 2008, (before it was demolished). (Not after.)

    1 comment:

    1. Thank you for sharing these experiences with us, RF. I hope it's helping you as much as it is those of us that are following along. Continued prayers for you both.


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