-
Continue reading →: The Diagnosis: ALS
What is ALS? Great question, here is a short and depressing video to explain it: About 9 months ago my left hand began to spasam. My thumb and first finger would randomly jerk up and down, this was strange but not alarming. Next, my fingers began to lock, usually one…
-
Continue reading →: Does it hurt?
My mom visited at the end of May and asked if I was in pain. Generally I’m not in physical pain, just the occasional muscle stiffness or UTI. I do feel an acute loss over the erosion of my relationships. It’s hard to be a mother, partner, or friend when…
-
Continue reading →: Thoughts on Love
Today I found myself contemplating love; God’s love for us, a mother’s love for her children, first love, enduring love, and how we are to love one another as Jesus loved us. Truth be told, I think about love more than death, regrets, or a cure. I’ve mourned the love…
-
Continue reading →: Is this the beginning of the end?
I don’t think I have done a general status update in a while, so here it is: And that friends is the GOOD news…the bad – I no longer sleep through the night / pain levels are increasing. I’m worried the interrupted sleep / pain are signs that this is…
-
Continue reading →: ALSaversarie
It’s been a year since I was diagnosed, In that time I have learned the following: I don’t want to die, but I’m not as afraid of dying as I used to be. I am loved. I am loved for who I am, not what I can do. Choosing to…
-
Continue reading →: A Serious Question
This is not the first post I envisioned For 2025. I had planned to start with resolutions, but I find that myself pondering a question I’ve had for almost a decade. As I enter what is statistically my last year of life, I don’t think I’ll be able to get…
-
Continue reading →: November Update
At this point I feel like updates are just macabre news flashes on my slow march to death…but I’m here (and in a mood it seems) so here it is: I’m starting the phase of ALS where I’m more object than person. My life is about logistics – how do…
-
Continue reading →: als #3
February brought the last snowof the season. Each flake felllike a scab of dry skin.We ran outside holding hands –turning our faces to the sky.We didn’t speak, and I found I trustedour silence more than the doctorsdiagnosis. Hours were spent staringat the one sheet prognosis carefullytaped to the refrigerator.We were…
-
Continue reading →: Clinic Update
On September 11th I had my third clinic visit. Clinic in general is a mixed bag on one hand people who go to clinic tend to have better quality of life, it’s also where you learn that you’re closer to death. I’ve asked my doctor to not tell me what…
-
Continue reading →: LAFTI #1
Welcome to the first in a series called life advice from the terminally ill, or LAFTI. People who are dying (or who are really old) can’t help but to impart our wisdom to the masses. My first bit of wisdom or advice is this: treat other people how you want…
Hello,
I’m Marianne
Welcome to my ALS story. The corner of the internet devoted to the good, the bad, and the ugly of living with ALS. Here, I invite you to join me on a journey of love, hope, and sadness as I navigate this final phase of my life,
Marianne Has ALS 