@dagmar-munn
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Dagmar Munn started the topic How do you handle variations in caregiver skills in regard to your ALS? in the forum Living With ALS 1 day, 3 hours ago
In James Clingman’s recent column, he talks about some of the difficulties he’s had to experience while spending a month in a healthcare facility. He chose to check in to the facility to give his wife (and caregiver family) a respite from their duties. But he’s found a wide range of responsiveness from the facility’s staff – – especia…[Read more]
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Blažej Pálenik and
Dagmar Munn are now friends 1 day, 16 hours ago -
Dagmar Munn replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 1 day, 16 hours ago
Maryann, Theracumin studies show it is helpful in reducing joint inflammation, increasing memory in older adults, and aides the gut with digestion – – but it had no direct effect on ALS symptoms.
In deciding to take a popular supplement, it is always good to know exactly what it can and cannot do. Regarding ALS and supplements a good resource to…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 16 hours ago
Hello Dennis,
I’m just checking in with you, since you joined our Forum only recently – – I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010 – – and I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics.
If there is anything specific you…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Daniel,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Alexi,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Ray,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Lorraine,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Rich,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Jo,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Andrew,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to…[Read more]
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hi Dagmar, .Thank you for your Welcome. I have enjoyed reading the informative information. Sometimes I feel I am more in touch than my Professor. I now look forward to contributing. I do have a site that claims to help ALS , they seem too good to be true which makes be suspect. however, I did notice when doing review some valuable information…[Read more]
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I am also very keen to know of your progression as its very inspiring what do you take, do etc As I take a lot suppliments and trialing high dosage injectable B12 , was on the courage trial but it was a fail like many that fail .I believe we can do a lot ourselves as my progression is slow after 15 months I have 50 percentabilty of my right arm…[Read more]
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Dagmar Munn posted a new activity comment 1 day, 17 hours ago
Hello Karen,
I’m just checking in with you, since you joined our Forum only recently – – I hope you have been able to read our ongoing discussions and are finding it easy to navigate to different topics. I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to…[Read more]
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Dagmar Munn posted a new activity comment 6 days, 12 hours ago
Hello Ray, I have not heard. Although I’ll admit that this study is not on my personal radar. I do invite you to start a new discussion on this topic in the Forum. Best add it to the “Research Topics.” That way, forum members can type in their thoughts and share experiences if they are in the study.
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ok. thank you.
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Dagmar Munn replied to the topic Does fungus cause ALS! in the forum Diagnosis Information and General Questions 6 days, 17 hours ago
Rich, I believe your statement would be more on point if written this way: a lot of people have this bacteria which can lead to Lyme disease and they have been misdiagnosed as having ALS.
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Dagmar Munn replied to the topic Coping with ALS in the forum Living With ALS 1 week ago
Excellent! Excellent article – – and thank you Amanda for your contribution of facts, resources, and helpful tips.
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Dagmar Munn replied to the topic Does fungus cause ALS! in the forum Diagnosis Information and General Questions 1 week ago
Rich, brellie bacteria causes Lyme disease.
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Dagmar Munn posted a new activity comment 1 week, 6 days ago
I am not so sure that there is a definitive “slow” and “fast” version of ALS. Everyone progresses (in different parts of their bodies) at different rates. It all depends on the amount of inflammation and oxidative stress the patient’s body is producing (more contributes to faster decline). I too had a bad limp in my first year…and have speech…[Read more]
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Dagmar Munn started the topic ALS Community Spotlight: "To families affected by ALS, Hope Loves Company offers hope, support” in the forum ALS Awareness Month 2 weeks ago
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ALSSpotlight, or read the full series here…[Read more]
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Dagmar Munn posted a new activity comment 2 weeks ago
Hello Ed,
Welcome to the forum! I am one of the forum moderators as well as a person 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 discussions by typing…[Read more]
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Hello, Have you heard any results of the Alspire study, the Ataxin-BioGen lumbar puncture? I was diagnosed April 18. Wondering if patients who received the drug (as opposed to the placebo) are saying anything in forums or Facebook, anywhere?
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Hello Ray, I have not heard. Although I’ll admit that this study is not on my personal radar. I do invite you to start a new discussion on this topic in the Forum. Best add it to the “Research Topics.” That way, forum members can type in their thoughts and share experiences if they are in the study.
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ok. thank you.
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Hi Ray,
When I was diagnosed my team applied for early access to Toffersen, now QALSody, When I asked if anyone had been in the clinical trials and what they thought and how they felt, I had a participant send me a private message. Everyone in that trial had to sign an agreement not to discuss the trial or treatment with others, and it…[Read more]
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Dagmar Munn posted a new activity comment 2 weeks ago
Hello Richard,
Welcome to the forum! I am one of the forum moderators as well as a person 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 discussions by…[Read more]
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