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Disease Progression
So….just how slow is SLOW? What kinds of things can one expect who’s newly diagnosed ? I know each person’s path is different, but what are some of the markers that some of you all (or caregivers) have experienced/watched?
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10 Replies
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Hi Maya,
Here is a brief video from Dr. Bedlack on ALS disease progression:
https://www.youtube.com/watch?v=a86zrvueaBo
See other short informative ALS videos at this location:
https://www.youtube.com/c/YourALSGuide
Richard
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The video Richard attached is a good explanation. I’ve encountered very many pALS in my almost 4 years of on line forums. I’ve seen a number of 15-20 year survivors as well as rapid progression pALS. I have seen a whole lot of variance. If you track and plot your FRS monthly you can tell the rate you are progressing vs the “average” for what that’s worth. Any one person’s “markers” or progression points really only apply to them for what I’ve seen.
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Maya,
Here is link to an online ALSFRS-R (ALS functional rating scale) that you can use – – it even calculates your total for you 🙂
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Thanks so much, Dagmar!! 🙂 This tool is incredibly helpful and I will continue to use it regularly. Thank you!
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Maya,
I’ve found the Patientslikeme site helpful. Lots of pALS there who post daily. They do have tools on the site to do your FRS and track other ALS related stuff. You will see the full range of progression ALS. People over 20 years as well people quickly progressing. People on there are helpful and supportive.
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Thanks so much, Bill! I just joined that site as well and I look forward to connecting with many others!
Maya
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Hi Maya,
The only thing I could not do in 2017 before diagnosis in 2018 was push ups.
You’re going to learn to be reactive and proactive according to your needs. Trust your instincts … there is not much else in the toolbox. Read, of course, and socialize. Little by little over time you’ll learn coping strategies for your personal situation. Stay positive. Try to carry on as ‘normal’ for as long as you can. Over the years you may need to lighten up (lighter back pack etc.) Assistance of a walker or Whill electric personal vehicle. Other people to assist as caregivers is a likely scenario eventually. Even without ALS that’s everyone’s reality. We’re just advanced ;o)
Adapt best you can as time goes by. Never give up. Stretch, walk and eat healthy as possible.
Take care
Cheers
Alex
Ps. If I had a guru, it would be Andrew Weil. And Dagmar’s always great for advice and positive vibes!!
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Hey Alex,
I really really really appreciate your kind words of encouragement. Honesty is the best policy and I highly respect that, thank you! I am so grateful this community exists…what a wonderful blessing all of you are! I will take your advice to heart and do some deep thinking so I can take a personal inventory to know where I stand in all areas of life. And, so I can work on building a better future for myself and learn to sensitively adapt to inevitable changes. Although this disease is unfortunate, I’ve also realized it can be a gift if we come to realize our inner strength and choose to use it to help others. You guys are amazing, and I truly admire your inspiration to fight!
Sending out incredibly radiant warm vibes to all!
Maya
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Thank you for your kind words, Alex!
Maya… and everyone, here is the link to my ALS and Wellness Blog – – where I share ALS wellness tips and motivation 🙂
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Amanda,
All the information you provided was highly insightful!! So, thank you for sharing! Feels like I need to compile a binder or something now lol with all of this rich feedback I’m getting from everyone here…overwhelmed with gratitude. You all are a godsend, sending good thoughts to all!
Maybe 2022 will bring a cure…?!
Maya
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Hello Maya
A good way to track your Alsfrs is with the ALS therapy institute’s Precision Medicine Program. You can look it up then enroll. They also measure limb activity with small tracking devices you strap onto wrists and ankles. Take a look and see what you think…ive been doing tbis for over two years now and find it very helpful. -
Hi Maya,
My name is Kathy and I was diagnosed with ALS about a year and a half ago. I am 45 years old. For me, it has been like a nightmare. I wish I could just wake up one day like this never happened. I have had a lot of difficulty with coping with this diagnosis. I have been depressed and anxious and I am afraid of dying. A lot of my symptoms have been getting worse now so this has been very upsetting for me. I can’t really speak anymore and I feel so embarrassed about this. Last year in June, I had to get a feeding tube. I am mentally and physically exhausted. I grieve for all that has been lost because of this horrible condition.
This community has been wonderful, though. I have greatly appreciated being able to communicate with others who understand what this experience is like. The moderators, Amanda and Dagmar, are always there to offer help, support, advice, and encouragement. Many of the members have already given you great advice that I agree with wholeheartedly. I would just add to try to do things you enjoy and focus on what you are still able to do. Happy New Year to all of you and I hope there’s a cure for ALS in 2022!
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The best advice I was given when I asked how long do I have and what to expect was typically people last 2-5 years but everyone is different. You normally progress at a somewhat constant rate. So whatever you see happening over the next several months is typically the rate you will see ongoing. I was diagnosed in 2009 and I am an outlier as my progression is extremely slow. I still walk unassisted, eat normally (although more slowly) and drive myself. My speech is way off, I have lots of excess saliva and my arms/hands are weak. I wish I could share some secret but from what I can tell it’s random luck.
good luck and God bless. -
Another thing to consider is the type of ALS that you have. Most people have limb-onset which tends to progress slower than bulbar-onset. Bulbar-onset tends to be more aggressive and progress faster. In my opinion, it is worse to have bulbar-onset since it affects your eating and speaking fairly quickly and often requires getting a feeding tube. Like Dr.Bedlack said, though, there are a lot of variations and it’s difficult to predict how long someone will live with ALS. It’s just such a sad and devastating condition to be diagnosed with and causes a great deal of suffering. It’s really disappointing that there are no effective treatments and no cure for ALS.
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