@amanda-sifford
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Amanda replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 5 days, 22 hours ago
Like John mentioned, please be sure to talk to you doctor about any kind of supplements before starting them. There are all kinds of theories and suggestions and you need to be very careful.
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Amanda started the topic Pre-fALS in the forum ALS News 6 days, 16 hours ago
Here is a link that tells a little about the pre-fALS study I’ve been in. This past May they started a clinical trials for pALS with a genetic SOD1 mutation associated with fast progression.…[Read more]
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Amanda posted a new activity comment 6 days, 17 hours ago
Hello Linda, 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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Amanda posted a new activity comment 6 days, 17 hours ago
Hello Sandra, 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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Amanda posted a new activity comment 6 days, 17 hours ago
Hello Jenny, 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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Amanda posted a new activity comment 6 days, 17 hours ago
Hello Jalal,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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Amanda posted a new activity comment 6 days, 17 hours ago
Hello Stephani,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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Amanda started the topic Did ALS Awareness Month Impact You? in the forum ALS Awareness Month 1 week, 3 days ago
How are you feeling now that you spend a month talking about ALS and trying to raise awareness? Are you invigorated and motivated to get more involved? Do you need a break from the topic? What ideas do you have about continuing to stay involved and what do you need to make that happen?
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Amanda started the topic Mindfulness check in for caregivers and others concerned about ALS in the forum A Forum for ALS Caregivers 1 week, 3 days ago
Good morning caregivers and friends — Lets do an update and check in!!
Our world is filled with negative acts and thoughts these days. Let’s check in and say something we are happy about or grateful for! I know ALS is terrible and the future looks grim for pALS, and is stressful on caregivers!!! That’s an understatement, but lets…[Read more]
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Amanda started the topic Member Check In in the forum Living With ALS 1 week, 3 days ago
Good morning pALS! Lets do a pALS check in. Our world is filled with negative acts and thoughts these days. Let’s check in and say something we are happy about or grateful for! I know ALS is terrible and the future looks grim for pALS, but lets practices some mindfulness, close your eyes and think about all that is good in your life ….What a…[Read more]
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Amanda posted a new activity comment 1 week, 3 days ago
Hello John, 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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Amanda posted a new activity comment 1 week, 3 days ago
Richard, you have some great ideas!! Dagmar is correct regarding ALS News Today being a business and can’t initiate things. However, our community members can all reach out to their local agencies, national organizations, government leaders and so on with these ideas. We can rally our friends and families to pitch in and take on the cause with…[Read more]
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Amanda posted a new activity comment 1 week, 3 days ago
Hello Jennifer!! No worries, there are things to learn with this forum, messageing and so on.
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Amanda posted a new activity comment 1 week, 3 days ago
I loved this piece!! Your writing makes me step back and look at things differently. I am constantly growing and learning thanks to my friends and the information I am exposed to.
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Amanda posted a new activity comment 1 week, 3 days ago
John,
One of the things my doctor and I spoke about at my pre-fALS ALS clinic visit was these weird pains I had been having for years under my rib cage and on my sides. I’ve seen specialist after specialist looking into crohn’s, colitis, IBS, IBD, ect. All the test come back negative except for inflammation. Now they are talking IBS, which is…[Read more]-
No other muscles are really affected at the moment, I can still move well. I have had an EMG and it didn’t show anything abnormal. I feel breathless when talking sometimes and I have a weak cough. I had COVID last year and seems like it progressed my prior breathing issues but they aren’t related to anything to do with my lungs. I don’t have any f…[Read more]
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John, it is good that you are planning to see a neurologist for an MRI. I would caution you from taking the advice of people on forums or chat rooms. They are not medical professionals. Don’t second-guess your doctor’s evaluation. Remember, there is still no difinitive test to confirm ALS – – only a battery of tests to rule out other conditions.…[Read more]
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Amanda and
Reema Aurora are now friends 1 week, 5 days ago
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Amanda and
Russell are now friends 1 week, 5 days ago
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Amanda replied to the topic MLB finally to honor Lou Gehrig. in the forum ALS Awareness Month 1 week, 5 days ago
Richard,
Have you sent letters to other sports organizations with your suggestions? That might be a game changer!
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Amanda and
Gigi are now friends 1 week, 6 days ago
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Amanda started the topic MLB Lou Gehrig in the forum ALS Awareness and Advocacy 1 week, 6 days ago
Lou Gehrig was an amazing baseball player and an inspiration to Americans. He was strong, noble, quiet and respected by the public and his peers. When he gave his speech, The Luckiest Man Alive, he was certainly talking about all the things he had experienced prior to him…[Read more]
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Thank you Amanda and Dagmar!