@frankiereedsr
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Amanda replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 3 days ago
George,
That is wonderful to hear for the both of you. -
Amanda started the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 3 days, 20 hours ago
ALS research is important to all of us in the ALS community. I know we all would agree that finding a cure for ALS would be our top research wish. We also know that ALS is what I refer to as a “catch-all” term, meaning that there may be different causes that lead to what is diagnosed as ALS. Outside of finding a cure (as I said, that’s our numbe…[Read more]
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Dagmar Munn replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 5 days, 10 hours 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 5 days, 10 hours 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 5 days, 10 hours 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 6 days, 21 hours 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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Amanda replied to the topic In Miami no clinical trials here in the forum Research Topics 1 week, 2 days ago
@Judy,
Where are you going? What symptoms are you trying to address and with what medication? Did they provide a reason to why they won’t provide a prescription? Perhaps there is another doctor that can provide you with the medications.
Amanda -
Dagmar Munn replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 1 week, 4 days 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 1 week, 5 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 1 week, 5 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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Amanda started the topic Major Stressors Caregivers Face in the forum A Forum for ALS Caregivers 1 week, 5 days ago
Many of the topics discussed on our ALS forum pertain to pALS living with ALS. I am very grateful to have this online community made of patients to turn to and discuss things about living with ALS and ALS research. However, I’d like to turn the focus to our brave, heroic, and selfless caregivers for this post.
Caregivers are amazing, but they a…[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 1 week, 6 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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Amanda started the topic ALS Awareness Month…We Need You to get involved. in the forum ALS Awareness and Advocacy 2 weeks, 1 day ago
Every May is ALS Awareness Month and here at BioNews/ALS News Today we try to focus on raising awareness. This year we are asking that each forum community member also participates in some way large or small! You can raise awareness by sharing your story or facts about ALS on social media, participating in ALS Walks in person or virtually, asking…[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 2 weeks, 3 days 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 2 weeks, 3 days 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 2 weeks, 6 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 2 weeks, 6 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 2 weeks, 6 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 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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Amanda replied to the topic Long Journey in the forum Diagnosis Information and General Questions 3 weeks ago
@ Mike and @John,
First, thank you for sharing your stories. I am glad that you found the forums a safe place to share and process some of what you are both experiencing. As you can see, our online community is amazingly supportive. Also, you know that you are not alone in dealing with some doctors who are not well informed about ALS and in my…[Read more]
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