Updates
I have not posted since the Fall and I am doing it now more to update friends on our status these days.
A lot changed since that September post. Well, maybe not a lot to most eyes but a lot to ours.
After a run in with Radicava, the new drug for ALS Brian got appendicitis, lost some significant strength, and we in general started to settle into the realities of middle stage ALS. We are blessed that 20 months after an ALS diagnosis Brian still walks with a walker, swallows, breaths, and talks without assistance. Brian now lives on the first floor, no more stairs. A friend comes n a few hours a day during the week for lunch. No more driving, and he pretty much choses not to leave the house except for the occasional medical appointment. It’s not that he is depressed, he is just comfortable where he is and prefers not to be out and about to the glances of strangers. Friends and visitors are welcome, stray glances at that guy with the walker doing odd stuff with his hands is what Brian is sensitive to now.
We watch TV together, talk, still share good meals and enjoy our critters. It’s not all gloom for sure, we are more okay than the above sounds.
My mom had some recent significant issues walking leading to an ER visit leading to being at a rehab facility and probably having surgery for spinal stenosis. She is 82 and we are still figuring everything out.
We are extremely lucky we can have people to help clean and to help Brian during the day here. I do still work full time and it’s in the plan for me to keep doing so because my job is a good one and as a Brian points out, this is a limited time situation. We realize we eventually will need a full time person here. I am thinking a live in one who has weekends and most evenings to themselves. Work is stressful sometimes but it’s also something I can do with finite and solvable tasks and problems, it’s a place to succeed, where success is possible.
Things do pile up here at home. I want to go room by room, and to the garage and den and sort it all out. I need to assemble a crew in the spring for sure.
Brian is as okay as you could expect him to be. He is absorbed by politics, and does like hanging out with me. As to how I feel, truth is I don’t spend a lot of time in how I feel. A lot of days I don’t feel much at all, and that’s a good thing. I’m in here somewhere, but most important now is what I can do, what I need to do, and coping Hour by hour, day by day. To live with ALS is to walk with a monster every waking moment. You hope walking with that monster makes you a better, stronger more compassionate person in the end and not a bitter bitch. That’s my goal for myself. My goal for today though is to get it all done. You show that monster all sorts of feeeelings it will bite you right in the butt.
A lot changed since that September post. Well, maybe not a lot to most eyes but a lot to ours.
After a run in with Radicava, the new drug for ALS Brian got appendicitis, lost some significant strength, and we in general started to settle into the realities of middle stage ALS. We are blessed that 20 months after an ALS diagnosis Brian still walks with a walker, swallows, breaths, and talks without assistance. Brian now lives on the first floor, no more stairs. A friend comes n a few hours a day during the week for lunch. No more driving, and he pretty much choses not to leave the house except for the occasional medical appointment. It’s not that he is depressed, he is just comfortable where he is and prefers not to be out and about to the glances of strangers. Friends and visitors are welcome, stray glances at that guy with the walker doing odd stuff with his hands is what Brian is sensitive to now.
We watch TV together, talk, still share good meals and enjoy our critters. It’s not all gloom for sure, we are more okay than the above sounds.
My mom had some recent significant issues walking leading to an ER visit leading to being at a rehab facility and probably having surgery for spinal stenosis. She is 82 and we are still figuring everything out.
We are extremely lucky we can have people to help clean and to help Brian during the day here. I do still work full time and it’s in the plan for me to keep doing so because my job is a good one and as a Brian points out, this is a limited time situation. We realize we eventually will need a full time person here. I am thinking a live in one who has weekends and most evenings to themselves. Work is stressful sometimes but it’s also something I can do with finite and solvable tasks and problems, it’s a place to succeed, where success is possible.
Things do pile up here at home. I want to go room by room, and to the garage and den and sort it all out. I need to assemble a crew in the spring for sure.
Brian is as okay as you could expect him to be. He is absorbed by politics, and does like hanging out with me. As to how I feel, truth is I don’t spend a lot of time in how I feel. A lot of days I don’t feel much at all, and that’s a good thing. I’m in here somewhere, but most important now is what I can do, what I need to do, and coping Hour by hour, day by day. To live with ALS is to walk with a monster every waking moment. You hope walking with that monster makes you a better, stronger more compassionate person in the end and not a bitter bitch. That’s my goal for myself. My goal for today though is to get it all done. You show that monster all sorts of feeeelings it will bite you right in the butt.
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