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Continue reading →: Sharing
Saturday a lovely woman and her two daughters came to visit. Her husband passed 1.5 years ago after 3 years of living with ALS. She had a lot of valuable information, but there were two BIG takeaways for me: First, she told me to not feel like a burden. She…
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Continue reading →: A New Hit Game Show
I have a running game show in my head called “Is it als or is it all in my head?!?” During clinic I was asked multile times if I was having trouble swallowing…immediatly after clinic I thought multiple times that I indeed was having trouble swallowing (spoiler alert it was…
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Continue reading →: Meet My Nemesis
When Jacob and I were house hunting it felt like we looked at a million homes. The kiddo loved each and every home – when we left a house he would give us all the reasons that house was THE house. Finally we came to the home we are currently…
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Continue reading →: Weekend Update
First, sorry for the delay in photos. Also sorry if I ignore your texts. It’s not that I don’t want to be social, if anything I think being social right now is really important…I’m just tired or sad or overwhelmed or perfectly content and I forgot you texted me 3…
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Continue reading →: Less Than Good News
March 8: Today one of the 3 drugs used to prolong the life of those with ALS was found to be ineffective in a phase 3 trial. You can read more about it here. I won’t say this is the most crushing news I’ve recieved in 2024, but it does…
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Continue reading →: Good News!
Today I got the best news…my ALS is sporadic, not genetic! Having sporadic ALS means I don’t have to worry about my son, brother, or mom getting this disease (the likelihood of any of my realitives getting ALS is 1 – 3%). March 7: I know having the genetic form…
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Continue reading →: New Things
March 5: I’ve had to give up putting up my hair with the lack of strength and dexterity in my left hand. Luckily I have the best husband ever who is learning to do the things I no longer can 🙂
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Continue reading →: When Does Life Stop Having Meaning?
With ALS there two big milestones you must consider (there are probably a million milestones…but these are the two that I think about most often: a feeding tube and a ventilator. A feeding tube is an easy yes for me. It doesn’t seem too invasive, I can still eat if…
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Continue reading →: Clutter
I’ve watching the series The Gentle Art of Swedish Death Cleaning. Season 1, Episode 2 is about a woman who has terminal cancer – I can relate to a lot of her feelings….I cannot relate to her very neat and tidy home. Ever since the diagnosis and new medication I’ve…
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Continue reading →: March Challenge
Surprise! This challenge isn’t just for me, it’s for you too! My challenge for the month of March is to post a picture each day showing the ups and downs of ALS. As I missed day 1, I have two photos for you today. March 2: We found a great…
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 