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Dagmar Munn replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 2 months ago
Yes, I miss being able to take off running too. Interestingly, I use a rebounder to walk in place… once in a while I go a little faster (soggy jog!) and it “feels” like I’m running.
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Dagmar Munn replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 2 months ago
Yes, gulping down a glass of water. For a long time, I had yearnings to drink 7-up. Missed that tart fizzy taste 😉
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Dagmar Munn replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 2 months ago
I agree Maggie. It was hard for me to always ask others “please, can you help me do…?” But I’ve since found that others really want to help and feel good that they did.
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Dagmar Munn started the topic Attending Events in the ALS Community in the forum ALS Awareness Month 2 months ago
ALS Awareness Month in the USA was held in May and in Canada, June is their month for awareness activities. But nowadays, many events take place all summer long – – and, all around the world.
It always amazes me to see the variety of events and the creativity of the organizers all to help raise funds for ALS research and patient needs. Like the…[Read more]
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Dagmar Munn started the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 2 months, 1 week ago
Living with ALS means dealing with the many daily, ongoing challenges that can include learning to use walkers or power chairs, sleeping with a mask, diet changes, or interacting with other people. Most times, we patients can meet the challenge and learn to live with the change. But some adjustments were darn hard and stood out in our minds. For…[Read more]
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Dagmar Munn replied to the topic Hop on a Cure! in the forum ALS Awareness and Advocacy 2 months, 2 weeks ago
I haven’t heard of the Hop on a Cure foundation (but now I know!) and I’m late to the game knowing anything about the Zak Brown Band (OK, so I don’t listen to country/western that much) but… I am sorry to learn that John has ALS. And yes, every little bit helps when it comes to raising awareness about ALS. Having a person in the public eye…[Read more]
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Dagmar Munn replied to the topic ALS in the Movies …and YOU could be a "star" in the forum ALS In The Media 2 months, 2 weeks ago
CONGRATULATIONS – – to Lisa Cross! (Bonahoom) – – our very own forum member/actor/now in a film!…..Lisa was featured in the special article that was published today in ALS News Today! It’s all about the film she’s in, how she heard about the part, and how working with the ALS community left the director with a new-found understanding and respect…[Read more]
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Dagmar Munn replied to the topic “the luckiest man on the face of the earth.” in the forum Living With ALS 2 months, 2 weeks ago
Richard, I believe you are mixing up facts and context in order to make your point.
Lou Gehrig didn’t say that phrase in relation to his illness, but in gratitude for the opportunities, people and experiences of his life. On July 4, 1939, Gehrig delivered his famed “Luckiest Man” speech in front of a sold-out crowd at Yankee Stadium.
A tra…[Read more]
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Dagmar Munn replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 2 months, 2 weeks ago
Debbie, thank you for sharing your knowledge of these issues with us. Your past experiences working in these areas is so helpful to those of us who find health insurance and coverage so confusing.
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Dagmar Munn started the topic Which resources have helped you the most as a caregiver? in the forum A Forum for ALS Caregivers 2 months, 2 weeks ago
Spouses and family members who step in and take on the role of caregiver for their loved one who has ALS – – are most likely first-time caregivers – – and not prepared for the many challenges ahead.
What or who helped you the most as you began your new role as a caregiver?
Was there a helpful resource that you could recommend to others? Who…[Read more]
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Dagmar Munn replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 2 months, 3 weeks ago
Carolyn, you have hit the nail on the head as to what’s wrong with our Medicare-health insurance-other payors-etc. system. What you describe is the catch-22 many of us face when trying to obtain an ALS medication. grrr!
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Dagmar Munn replied to the topic What's the latest news on AMX0035? in the forum Research Topics 2 months, 3 weeks ago
Vance, thank you for sharing your experiences and your FDA hearing testimony with us. I wonder if these questions were ever posed to you:
– You began taking Radicava and Riluzole shortly after being diagnosed in December 2017.
– A year later, in March 2018 you began AMX0035, along with continuing Riluzole and Radicava.
– You began noticing…[Read more] -
Dagmar Munn started the topic What do you think of this new form of Radicava? in the forum Research Topics 2 months, 3 weeks ago
Radicava is an ALS treatment (used to help slow ALS symptom progression) that has been available in the US since 2017. But it was always only available as an into-the-vein therapy with an intense, rigid schedule that many patients found inconvenient and difficult to follow. Recent news is that Radicava is now in a liquid suspension formulation – -…[Read more]
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Dagmar Munn replied to the topic What's the latest news on AMX0035? in the forum Research Topics 2 months, 3 weeks ago
Steve – – yup, I’m still using the bubble bottle. 🙂
Here is what I found on the AMX0035 website:
“Access to AMX0035 outside of clinical trials is available in the U.S. for certain adults with ALS who meet eligibility criteria for participation in the FDA-authorized Expanded Access Program (EAP) for AMX0035. To learn more about the currently…[Read more] -
Dagmar Munn replied to the topic In Miami no clinical trials in the forum Research Topics 3 months 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 months 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 months 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 3 months, 1 week 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 3 months, 1 week 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 3 months, 1 week 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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