ALS News Today Forums | Shawn | Activity https://alsnewstoday.com/forums/members/shawn/activity/ Activity feed for Shawn. Thu, 16 Apr 2026 17:59:29 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 70e69b6adeeaae2478d42fea1a4b3571 Shawn replied to the discussion Have you had any surgeries since being diagnosed with ALS? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/have-you-had-any-surgeries-since-being-diagnosed-with-als/#post-26623 Thu, 17 Jul 2025 21:47:39 -0500 Reply to Have you had any surgeries since being diagnosed with ALS?

I am a 57 year old slow progressor with upper limb onset diagnosed in November 2020. I was able to continue to play ice hockey for a couple years before my hip started giving me severe pain (related to 50+ years of playing hockey rather than ALS). I was diagnosed with advanced osteoarthritis in my right hip. My hockey days were over (honestly…

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]]> 3052d3eacf6099561378e646040896bd Shawn replied to the discussion Relyvrio in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/relyvrio/#post-24074 Thu, 08 Jun 2023 21:46:11 -0500 Reply to Relyvrio

I’ve been on Relyrio for about 8 months (amongst multiple other meds in my “ALS cocktail therapy”). I took off-label SPB and TUDCA before starting. I have continued slow progression (-5 ALSFRS in 30 mos.) and no side effects.

My Relyrio “pro tips”:

> Use warmish water for better dissolution

> As 007 says “shaken not stirred” (I keep an… Read more

]]> 4d1d79ef80ea714981e208ee3bb27cef Shawn replied to the discussion Are you celebrating anything special this summer? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/are-you-celebrating-anything-special-this-summer/#post-22218 Thu, 23 Jun 2022 23:54:39 -0500 Reply to Are you celebrating anything special this summer?

Getting married Aug 10 to the love of my life (in Europe nonetheless)! I was 4 mos post-dx when we started dating and told her on our 4th date after she asked about my port :-). My unflappable fiancee said “no day is promised. . .at least it’s not cancer” and we haven’t looked back since. I credit much of my very slow progression to her… Read more

]]> 1556bc3cebe614f9a1cf94ba7f81b37c Shawn posted a new activity comment https://alsnewstoday.com/forums/activity/p/10215/#acomment-12554 Fri, 02 Jul 2021 05:20:58 -0500 Hi Amanda. Just an FYI Dr. Merit Cudkowicz (a she) is the head of Neurology at Mass General Hospital and Director of the Healy ALS Center there. She is phenomenal I’m lucky to be under her care!

In reply to - Shawn became a registered member ]]> 3f6d85a0e3f9994e1da266f75775a142 Shawn replied to the discussion EDARAVONE in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/edaravone/#post-19757 Fri, 02 Jul 2021 05:15:04 -0500 Reply to EDARAVONE

I was fairly recently diagnosed (12.20), limb onset mostly left non-dominant hand, and have been deemed a slow progressor by my docs at Penn and MGH. I credit at least some of the slow progression to my therapeutic plan.

I started Radacava in February 2021. I have not experienced any significant side effects, maybe some tingling in left… Read more

]]> f7f55359c2c60a5867e0ac271577bd19 Shawn started the discussion Any recommendations for good "mid level" technical reference on ALS neurology? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/any-recommendations-for-good-mid-level-technical-reference-on-als-neurology/ Fri, 02 Jul 2021 05:01:57 -0500 Any recommendations for good "mid level" technical reference on ALS neurology?

Does anyone have any recommendations for good “mid level” technical reference on ALS neurological principles / pathways? Something substantially more detailed than the introductory-type material on ALS news today or IAMALS “What is ALS” web pages but not as esoteric as ALS scientific research papers?

]]> 2608234955855ab20ae679282b9f0e8e Shawn and Jean-Pierre Le Rouzic are now connected https://alsnewstoday.com/forums/activity/p/12531/ Thu, 01 Jul 2021 19:40:51 -0500 0 8c928ed1fcc023c66a50b96c02a2d01d Shawn replied to the discussion SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions https://alsnewstoday.com/forums/forums/topic/supplements-to-slow-als-progression/#post-19720 Tue, 29 Jun 2021 20:46:11 -0500 Reply to SUPPLEMENTS TO SLOW ALS PROGRESSION

This is my list of meds/supplements I worked out with my Mass General Neurologist:

Magnesium / OTC / 250 mg / BID

Riluzole / Rx / 50 mg / BID

Edaravone / Rx / 60 mg infus / 10x Mnthly

Nuedexta / Rx / 10 mg / BID

TUDCA / OTC / 1000 mg / BID

Sodium Phenylbutyrate / Rx / 3000 mg / BID

Methylcobalamin / Rx / 2×25 mg IM Inj… Read more

]]> c202d33edefd10a16c7b7bce2181456e Shawn posted a new activity comment https://alsnewstoday.com/forums/activity/p/10215/#acomment-10254 Wed, 17 Feb 2021 03:18:33 -0600 Hi Dagmar & Amanda. Nice to meet you. Thanks for the welcome note. Looks like lots of good information and connections here. I’m a few months post Dx and still trying to get a grip on my situation and make sense of all the information out there. I was extremely fortunate to be seen by Dr. Cudkowicz at MGH so am off to a strong start on… Read more

In reply to - Shawn became a registered member ]]> 522a1e73eb1741aae3edf283ab881ec7 Shawn became a registered member https://alsnewstoday.com/forums/activity/p/10215/ Mon, 15 Feb 2021 04:04:07 -0600 5