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Hi. It’s been several years since I’ve posted here. My loving husband, Darin, passed away on January 4, 2021 at the age of 40. He battled ALS for 4 years and 8 months. Our children are now almost 6 and 10.

Hi, I've heard a lot about not letting your PALS fall, that after every fall it speeds up progression. I need to know at what point should an assistive device be used? (cane, walking stick). My PALS tripped over the corner of the area rug that was sticking up this morning and crashed to the...

Hi Everyone, It's been 13 month's since my husband's diagnosis. It's been a really long time since I've posted on here. I just wanted to update everyone on how everything is going, but first I would like to THANK ALL OF YOU :) You were my support system with your encouraging words of wisdom...

Hi Everyone, It's been awhile since I've last posted. I've been muddling through what I now know to be the "7 stages of grief". I see a therapist weekly and am on anti-depressants. While not a "cure all" it has definitely helped. My PALS is doing good on his Tirasemtiv clinical trial. I've...

Hi, I'm not sure if I'm posting in the right forum, but my husband (PALS) recently started complaining of joint pain/aches in his ankle and his finger. He said his ankle is randomly giving out on him and it aches as does his finger in his right hand. I've read that magnesium should help and I...

I've attached the PDF too. RSS Feeds - BrainStorm -Nikki

Hi. Just wanted to let you know that my husband will be starting the Tirasemtiv trial next Monday. The first 2 weeks are open label. I will keep everyone updated on how he does. We are also going to NIH on July 27th to volunteer for the HERV-K. Natural History Study. He will be donating...

Not sure if anyone connects via phone, but is there anyway anyone would be interested in talking to me? I just feel so alone and really would like to talk to someone other than online. I know there's local support groups here, but I don't know if I can bring myself to go. I'm just so scared and...

Hi, Would anyone mind sharing what trials, treatments, or daily supplements you are on and feel are benefiting you? My husband and I are trying to come up with some sort of plan and seem to be at a loss. Everything seems so confusing. I appreciate it immensely. Thank you. -Nikki

Hi, my husband has been diagnosed with ALS. He is 36 years old. Dr. Bedlack said that he is about 1 year into progression. His breathing is at 101%, which is good according to them. He has 60% strength in his right hand and 36% strength in his left hand. He has left arm/hand weakness and...