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Continue reading →: ALS Poems
Fair Warning: These are not my best work, but they are the most relevant, Also – will add more later. Jacob All I want is to Live, inside the Safety of your arms. February Aghast at this new Life, loss of life? AndSorrow. So much sorrow.
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Continue reading →: Are you still working?
The short answer to this is yes. <- SHORTEST POST EVER! Just kidding, theres more. The next big question here is: How long do you plan on working? This answer is a bit more complicated, but the short of it is I will continue to work as long as the…
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Continue reading →: FAQ: Do you notice a difference?
Recently a few people have asked me if I can tell a difference in progression on a daily, weekly, or monthly basis. The answer to all three is…yeah, I can. Daily: I don’t notice a difference in my body on a daily basis. I do notice a significant change in…
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Continue reading →: Bucket List
I make a list each year of the stuff I want to do….I’ve never thought of it as a bucket list so much as a “Hey these are goals or things I want to do list!” The list usually includes things like lose 50 pounds, go see a play, or…
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Continue reading →: Are you mad at God?
Warning 1: This is going to be one of those super long introspective posts. If you don’t feel like reading the whole shabang skip down to the too long didn’t read (TLDR) at the bottom. Warning 2: It is very likely that if you do read this entire post you…
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Continue reading →: Fear: Isolation
You would think that with ALS my greatest fear would be dying, or the slow loss of control over my body. I think about both…pretty frequently, but one (spoiler alert there will be more fear posts!) of my biggest fears is isolation. Right now I look and function as a…
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Continue reading →: Blessings: My Husband
Jacob and I met in 2019 before the start of the pandemic. Both of us had low expectations having been jaded by the hell that is online dating. Our date got off to a rocky start….we went to different coffee shops (same name, located on the same road). He drove…
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Continue reading →: Medical Update: February
The following is the basicis of our last ALS Clinic visit: Next appointment: June
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 