@alexandratennessee
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Alexandra Marroquin replied to the topic Information or results on Radicava (Edaravone) in the forum Research Topics 1 year, 5 months ago
My boyfriend was diagnosed with ALS in April 2020 and began taking Radicava in May 2020. He recently completed his third round of Radicava. Although it is still early on in the process, I have not noted much difference. He since has began to use a breathing machine on a regular basis. He had a port installed for the infusions. I hope more…[Read more]
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Alexandra Marroquin replied to the topic The impact of having ALS on a spouse in the forum ALS and Relationships 1 year, 5 months ago
My boyfriend of five years began to experience strong signs of ALS in January and ALS was confirmed in April 2020. We do not live together, but I spend much time at his house. The man who always treated me so well, loved me much and was always my rock is not always so nice anymore. I know that he is going through so much and it is still…[Read more]
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Alexandra Marroquin became a registered member 1 year, 6 months ago
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Hello Alexandra,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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. If you have any questions, concerns, or…[Read more]
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Hello Alexandra, 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 l…[Read more]
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Yes, I agree with you Alexandra. Please give your boyfriend time to process, accept and come to terms with the “trauma” of being told he has ALS. Three months is such a short time to expect him to be “OK with it.” It may take the whole year… but, you can help him and both of you by: taking time together to allow each of you to grieve your…[Read more]