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Dagmar Munn replied to the topic In Miami no clinical trials in the forum Research Topics 1 day, 10 hours ago
Hello Judy, I can find no trials for APN01 in the USA. This drug is being looked at as a treatment for COVID.
Here is a link to the company website: https://www.biospace.com/article/releases/apeiron-biologics-apn01-selected-for-large-scale-us-trial-in-covid-19/
You can check the status of ongoing and new clinical trials for ALS here:…[Read more]
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Dagmar Munn replied to the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 3 days, 11 hours ago
I think research should be continued in the areas of physical therapy, therapeutic exercise, and movement training methods that have been successful in helping patients with MS, Parkinson’s, stroke, etc.
It seems that this topic of research has dropped off the map over the last few years. Surely much can be learned from the progress made in other…[Read more]
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Dagmar Munn started the topic Did You Have to Change Careers, or Even Retire, After Being Diagnosed with ALS in the forum Living With ALS 3 days, 21 hours ago
If you were already retired by the time you had your first ALS symptoms, what type of career did you have before being diagnosed with ALS? If you were still at that job today, do you think you could do it with ALS, or have to quit?
Many working-age ALS patients need to continue working and do, but need workplace accommodations or have to…[Read more] -
Dagmar Munn replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 1 week, 2 days ago
Pat, I’m glad to know they were of help.
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Dagmar Munn replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 1 week, 2 days ago
Thank you for sharing your situation, George. It sounds like you are finding ways to take care of yourself while taking good care of your partner. 53 years together is certainly a milestone. Best wishes to you both.
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Dagmar Munn replied to the topic Long Journey in the forum Diagnosis Information and General Questions 1 week, 2 days ago
Lisa – I am happy to read that you have found a regimen that works for you. But, I need to point out that “RCH4” is yet an unproven treatment for ALS. Also, generalizing the long-term effects of Riluzole and Radicava to only “3 months” is your opinion only…. for example, I have taken Riluzole for the past 12 years (way beyond the 3 months…[Read more]
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Dagmar Munn started the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 1 week, 3 days ago
Family caregivers — the spouses, partners, family members, friends, and even neighbors who care for someone with ALS all have a challenging responsibility that often goes unnoticed by those outside the ALS community. Being an ALS caregiver can include facing stressful events, changes in symptoms, and other unexpected challenges. Self-care is v…[Read more]
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Dagmar Munn replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 2 weeks, 1 day ago
Pat, over the past years of my ALS I’ve had to visit the dentist several times – – replacing a filling that fell out and having caps put on several teeth. Initially, I was so worried about choking… having to tilt back in the chair and having water sprayed in my mouth (visions of the awfulness of waterboarding!).
But I found out that modern…[Read more]
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Dagmar Munn replied to the topic Riluzole and Radicava in the forum Living With ALS 2 weeks, 2 days ago
Well said, Mary. Well said. I agree that since we don’t have exact twins of ourselves, to serve as the “control,” we have no way of knowing exactly what combination of treatments and therapies work for our body. Trial and error, doing your research, and listening to your body seem to be the only guides for us.
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Dagmar Munn replied to the topic Riluzole and Radicava in the forum Living With ALS 2 weeks, 2 days ago
Lynn, I have been taking Riluzole for 12 years now – – no side effects at all – -and, I’m still here 😉 …which to me, says it’s doing something positive.
How do you know that your husband’s fall was due to the Riluzole? Having ALS is a life lesson in the adage: “association does not necessarily mean causation.” What else is he taking or doing…[Read more]
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Dagmar Munn started the topic Do You Think You Match the Results of this ALS Survey? in the forum Living With ALS 2 weeks, 3 days ago
In February, ALS News Today reported the results of an online survey that I found very interesting. Of the 290 U.S. residents who completed the survey, over two-thirds (200) of them were people living with ALS or answering on behalf of someone with the disease. More than half (63.54%) of 181 patients responding reported having sporadic ALS, and…[Read more]
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Dagmar Munn replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 3 weeks ago
From reading everyone’s responses, I think we “former fitness devotees” have discovered that we now need to make adjustments – – in duration, frequency, and type of exercise. It’s also an ego adjustment too; to not get caught up in comparing what we used to be able to do. Our bodies need daily movement… it doesn’t have to be traditional…[Read more]
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Dagmar Munn replied to the topic 1st EMG in the forum Diagnosis Information and General Questions 3 weeks ago
Andrew, that is good news about your recent EMG and that your neurologist explained and reassured you. I’m glad our forum members could offer you insight and support. Best wishes on your road to finding a diagnosis.
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Dagmar Munn replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 3 weeks, 3 days ago
Bravo Bill! You certainly are maintaining your physical activity – – along with a well-thought-out transition plan.
London Marathon in October! And hand-cycling in the 2023 Boston Marathon! Those are some fantastic goals! Go for it 😉
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Dagmar Munn posted an update 3 weeks, 3 days ago
Sharing my latest post: “Are You Stuck in the ALS Waiting Room?”
https://alsandwellness.blogspot.com/2022/04/are-you-stuck-in-als-waiting-room.html -
Dagmar Munn started the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 3 weeks, 3 days ago
Exercising and ALS used to be a controversial topic among patients and their doctors. But the past 10 years of research show that exercise is indeed beneficial for those living with ALS. But, as I’ve discovered over the 12 years I’ve been living with the disease, regarding exercise: it matters what you do and how long you do it.
I used to eas…[Read more]
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Dagmar Munn replied to the topic ALS and Pain in the forum Living With ALS 3 weeks, 4 days ago
John, the one thing I’ve learned from reading our forum member’s comments – – is that we all have slightly different variations of similar symptoms. That said, my own experience was to have achy pain in my shin and thigh of the leg that had foot drop. This was during my first year. But the combination of medication, regular range-of-motion…[Read more]
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Dagmar Munn replied to the topic Long Journey in the forum Diagnosis Information and General Questions 4 weeks, 1 day ago
I agree with you Trevor.
Mike – – it does take a long time for many patients to finally have a definitive diagnosis. Some see the same neurologist, but the symptoms are so slow that an early determination can’t be made. Others (like what seems to have happened to you) see numerous physicians but due to their lack of familiarity with ALS, are…[Read more] -
Dagmar Munn replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 1 month ago
Congrats Lisa! What a unique and wonderful experience. it’s great to hear the feedback about the director and crew. I had emailed back and forth with the director early on – – when he asked me if I knew anyone with ALS who might want to be in his movie (HA!) and he was kind and considerate then too. ………..and to be in your sister’s wheelchair…[Read more]
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Dagmar Munn replied to the topic How to Keep on Talking: Helpful Tips and Links for ALS-related Dysarthria in the forum Living With ALS 1 month ago
Bravo Pauline! I like your attitude! …and am happy to read that you were able to find the resources that helped you early on.
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