Skyclarys was approved in Feb. 2023 for the treatment of Friedreich ataxia. For those who may not be aware, FA is an autosomal-recessive genetic disease which has some similarities to ALS.
I personally know some FA patients who have been taking Skyclarys and are benefiting from the drug which...
Hi all, I am looking for suggestions for adaptive clothing or ways to modify regular clothing to make getting dressed easier on both CALS and PALS. My PALS, Steve, is nearly completely paralyzed from the neck down, and also has limited range of motion in his arms and shoulders. I got a great tip...
First off, my heart goes out to all of you. You are so incredibly brave and generous with sharing your time, experience and support.
My husband walked into a neurologist's office with symmetrical muscle weakness and walked out with a diagnosis of ALS.
Some background -
My husband is 51 and...
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Hi All,
I first want to thank you for the opportunity to voice my concerns as well as my apologies for any inconveniences.
To start, my symptoms began a year a ago with some twitching on my stomach. I did a quick google search and Lou Gehrig's Disease came up. At first, I quickly brushed it...
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I know I'm 17 years old and it's very rare for me to have ALS on this age, but I still hope you hear me out on this.
This all started with muscle twitching about 4 weeks ago. I felt it in my legs and in my back which was really weird feeling. I also noticed that when I was standing still my...
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Hello everyone, just want to say I am a firm believer of Jesus. So my symptoms started as having a hard time taking a deep breath and gasping for air. I went to the ER they took a chest xray and said it was asthma, they prescribed me a 6 day supply of steroids and sent me on my way. I took the...
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Thank you all for taking the time to read my post and I would appreciate any advice or knowledge you can pass on. I have read the "before you post sticky".
So this all started the the 1st week in Dec, I woke up 1 morning and had a persistent twitch in my left thigh. It prob went on 4-5 days...
I'm hesitant to post here because of the seriousness of the disease in which I'm extremely anxious over, but I need guidance:
I've been battling a bulging disc in my lower back since 2007 that gets irritated a few times a year. Flash back to middle of February and I aggravated it again, but...
I'm hesitant to post this as I know this is a very serious disease to be anxious over, but I'm very worried.
I've been battling a bulging disc in my lower back since 2007 that gets irritated a few times a year. Flash back to middle of February and I aggravated it again, but then again went to...
So, here I am exactly one week out from my husband's death. It was really only after he actually passed that I have started to realize the absolute hellfire we went through together.
There was beauty, love, and moments of joy for sure. I am very sure I never felt closer to or loved another...