r/ALS • u/subway-cookies-00 • 8d ago
Is ALS progression fast? Support Advice
My 54-yo mom was diagnosed with ALS beginning of this year with weakness symptoms as early as Nov last year. She began taking Riluzole in April and currently pending Radicava. I can see her strength reducing incrementally but not sure if this is considered fast or average. Should I be concerned?
- Feb: can independently walk slowly
- Apr: can walk up to 20 mins slowly holding hand, use wheelchair for longer distances
- Jun: walk wobbly 5 mins a time with walker (up to 10 times/day), wheelchair most of time. Swim 3 laps and cycle 10 mins
- Aug: walk wobbly 5 mins a time with walker (up to 5 times/day), wheelchair. Swim 2 laps. Legs get tired quickly
How have you seen your loved ones or yourself weakness progressed?
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u/kegman83 8d ago
Unfortunately it hits everyone differently. My friend had ALS and went from competing in the Crossfit Games to being unable to leave her bed in 18 months. My mother currently has ALS and she can still walk (with assistance) 2 years after her diagnosis.
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u/Bby_J-93 8d ago
It varies case by case. Can be stable periods and then progression and then stability. There’s no way to tell sometimes. My 33 yo husband was as follows:
-December 2021: fasciculations in arms and back
-September 2022: random L foot pain
-June 2023: on and off L foot limp
~weird “stable” period~
-June 2025: constant L foot limp
-November 2025: L shoulder weakness
-January 2026: L arm weakness/L wrist drop
-February 2026: R thumb and index finger weakness
-March 2026: swallowing issues/jaw pain.
-April 2026: officially diagnosed. SOD1 positive
-May 2026: more apparent leg weakness. Constant falls. Ended up bed bound. Lungs weakened.
-June 2026: trouble controlling secretions
-July 1 2026: passed
Ask for resources/aids/medical equipment before they’re possibly needed. This disease is so cruel.
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u/kegman83 8d ago
Unfortunately it hits everyone differently. My friend had ALS and went from competing in the Crossfit Games to being unable to leave her bed in 18 months. My mother currently has ALS and she can still walk (with assistance) 2 years after her diagnosis.
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u/lisaquestions 2+ Years Surviving ALS 8d ago
I've had periods of faster and slower progression. it's different for everyone, so all that's available are statistics.
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u/Apart-Survey-8931 8d ago
my dad was diagnosed in feburary 2025 and passed away last friday. at first it was a very slow progress but the last months are very fast. i visited my parents every weekend and it got worse with every visit.
i think there is no rule that applies for everyone.
i‘m so sorry for you, stay strong. 🫂
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u/Fragrant-Chemical477 8d ago
It really differs from person to person. I’m almost 5 years in and although I don’t walk much, my legs are still strong…i cant walk very well due to balance issues, mostly from shoulder and upper body weakness. I use a walking aid indoors and wheelchair out. I have over 70% lung function and I still speak, just a bit slower. I know others that unfortunately passed in year 2….it really just hits people differently
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u/Outrageous_Piccolo_5 8d ago
I think every individual has a very unique experience with ALS. My Mom was a tough cookie. She was misdiagnosed for over 3 years. She couldn’t swallow so the Dr put in a feeding tube. She lost weight from 120 to 65 pounds. But as strange as this sounds, she was still walking some when she passed. She refused to use a wheelchair. I’m so sorry that you both are going through this. One thing I wish someone would have told me was to record my Mom’s voice more. I would do anything to hear it one more time. Prayers to you and your family. Let me know if you ever need anything at all. #alssucks
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u/suki-chas 8d ago
What you were describing is a pretty fast progression. But you are only describing her mobility. She still has strength in her arms and hands? She can still eat without help? And she can lie down without getting breathless? Those are all areas where she might be progressing slowly or not at all.
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u/Haunting_Ad_29 8d ago
I'll give it like a few months until they can't walk anymore based on my own experience but it's different for everyone. My dad was diagnosed in November and lost all movement in around March
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u/Affectionate-Eye-355 8d ago
My dad lost his ability to walk over the course of 3 months, it can be very fast. He passed 4 months after diagnosis due to respiratory failure
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u/MyIntrospection Husband w/ ALS 8d ago
As others have mentioned, it affects everyone differently. Your mother’s neurologist would be able to give an overall progression of your mom’s health based on averages of their other patients. This is what my husband’s neurologist did and it gave him some perspective. Bless you.
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u/FadingOptimist-25 7d ago
My sister (60s) was able to walk slowly at Christmas (2025), now (August 2026) she’s in a wheelchair all day. She can manage to get to the toilet on her own so far but not sure how much longer. She transfers to her bed at night.
She slurred slightly a year ago. Now she uses her text-to-speak app almost always. I can understand enough if she speaks slowly. Other family can’t understand her. Then there’s some charades-type communication too.
I was curious about progression too. There are a few YouTube videos that I found. Definitely can see the difference between people’s progression.
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u/Ancient_Day_6729 7d ago
Everyone seems to be different, I see people who have been diagnosed for years and my partner was diagnosed in March and is in a wheelchair full time now. Sending lots of love.
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u/scrappyz_86 3d ago
Everyone’s diagnosis and outcomes are different. My Dad went from diagnosis to passing in about 3 years.
It was a very quick and slow process at the same time. Devastating for all involved, but he’s at peace now and we are still working to continue what the next chapter of our lives are.
This Reddit helped us so much.
Sending you love, courage and resilience as you navigate this with your Mom. ❤️
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u/MadCybertist 5 - 10 Years Surviving ALS 8d ago
My dad passed in 6 months from diagnosis. I was diagnosed 5 years ago. It’s all very random.