@noshier48
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Dagmar Munn and
Nancy are now friends 1 year, 8 months ago -
Nancy replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 1 year, 10 months ago
Instructions with my riluzole indicated taking it 2 hours after eating and/or 1 hour before. Does anyone have insight on if those time frames are necessary?
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Nancy replied to the topic Information or results on RILUZOLE in the forum Research Topics 1 year, 11 months ago
Regarding taking Riluzole or not: each of us will really never know if it is helping, if you start taking it and the presumed side effects are too difficult to deal with, you can stop taking it. My neurologist felt that not that many people experience the side effects. I am taking it and I feel more tired, but as Dagmar indicated this may be t…[Read more]
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Nancy replied to the topic Are the clinics open? in the forum Coronavirus (COVID-19) and ALS 2 years, 2 months ago
My appointment was scheduled for March 18th. The Friday before that I received a reminder and I confirmed the appointment. 36 hours before the appointment I was told not to come. Luckily that occurred before we started the 10 hour drive. So far, no news on when it might be rescheduled. As it turned out, Salt Lake City had a major earthquake the…[Read more]
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Nancy replied to the topic Happy Anniversary to our forum! in the forum Using our Forums 2 years, 2 months ago
Having been diagnosed with ALS less than a year ago, I had no idea the forum is only a year old! You are doing a great job keeping the members informed with pertinent information. I am sure I have learned much more about ALS over the past seven months than I would have without accessing this valuable site. Thank you!
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Nancy,
Thank you for the kind words! Dagmar and I both care deeply about the forum members. There are so many amazing people on the forum that are knowledgeable about ALS and they willingly share so much information. There are members that raise money, participate in research and promote awareness! Isn’t that incredible? I admire our members and…[Read more]
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Nancy and
Diana Belland are now friends 2 years, 2 months ago -
Nancy changed their profile picture 2 years, 2 months ago
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Nancy changed their profile picture 2 years, 2 months ago
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Nancy's profile was updated 2 years, 2 months ago
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Kathryn F. Kennedy and
Nancy are now friends 2 years, 3 months ago -
Nancy replied to the topic Contact sports and ALS in the forum Research Topics 2 years, 3 months ago
I did not play contact sports, but starting in my 30s I did considerable running and racing in track and road races including training for and running several marathons. I think oxidative stress may play a role in why I now have ALS.
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Amanda and
Nancy are now friends 2 years, 4 months ago -
Nancy's profile was updated 2 years, 4 months ago
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Nancy started the topic Multidisciplinary Clinics in the forum Living With ALS 2 years, 4 months ago
I was diagnosed with ALS about six months ago. It seems to be progressing slowly for now. Currently the closest multidisciplinary ALS clinic is a nine hour drive and the closest support group is two hours away, in good weather. Another potential complicating factor is that we live in an area of the country that experiences winter five months out…[Read more]
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Nancy became a registered member 2 years, 4 months ago
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Hello Nancy,
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 even…[Read more]
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Hello Nancy, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]
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