@shawn
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Shawn replied to the topic Are you celebrating anything special this summer? in the forum Living With ALS 1 week, 6 days ago
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 amazing…[Read more]
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Shawn posted a new activity comment 1 year ago
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!
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Shawn replied to the topic EDARAVONE in the forum Diagnosis Information and General Questions 1 year ago
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 leg…[Read more]
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Shawn started the topic Any recommendations for good "mid level" technical reference on ALS neurology? in the forum Diagnosis Information and General Questions 1 year ago
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?
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Shawn and
Jean-Pierre Le Rouzic are now friends 1 year ago -
Shawn replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 1 year ago
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]
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Shawn posted a new activity comment 1 year, 4 months ago
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 my…[Read more]
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Shawn,
I’ve heard that doctors name before and he has a good reputation. I’m glad that you were able to get with someone who is knowledgeable about ALS. Please keep us posted and let us know if you have any ideas for the forum. Ideas are always welcomed!!-
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!
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Shawn became a registered member 1 year, 4 months ago
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Hello Shawn,
Welcome to the forum! I am one of the forum moderators, as well as a person who is living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]
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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 my…[Read more]
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Shawn,
I’ve heard that doctors name before and he has a good reputation. I’m glad that you were able to get with someone who is knowledgeable about ALS. Please keep us posted and let us know if you have any ideas for the forum. Ideas are always welcomed!!-
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!
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Hello Shawn, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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awwww…. what “A–Love-Story” indeed! Congratulations and best wishes to you both! When you two have tied the knot, be sure to tell us all the wonderful details of the happy day… and your trip to Europe!