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Dagmar Munn started the topic Are you a part of any ALS support groups? in the forum Living With ALS 1 day, 1 hour ago
ALS support groups are valuable for sharing vital information and giving the needed support to patients and family caregivers. These support groups are plentiful in the US, but our forum members live worldwide and often don’t have access to a support group.
Another example is my own, I live in a part of the US that is 20 miles from the n…[Read more]
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Dagmar Munn replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 6 days, 14 hours ago
Hi Gail,
I wrote about my experience with a shower chair here: https://alsandwellness.blogspot.com/2020/10/how-i-made-my-shower-safer.html
although mine is not tilting.
Here is a Google link to the types of tilting chairs available.…[Read more] -
Dagmar Munn started the topic What are your tips to prepare for a non-ALS doctor’s appointment? in the forum Living With ALS 1 week ago
Although we’ve shared tips in this forum before on how to prepare for an ALS Clinic visit (here’s the link) in this time of covid, or even summer colds, there’s always the chance you’ll be visiting an InstaCare type of doctor rather than your regular ALS neurologist. Having to start from scratch with your medical history and medications can be da…[Read more]
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Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 1 week, 6 days ago
Yes, Ralph, range of motion exercises are a great start to help with recovery.
My update – – it’s been 2-1/2 weeks since the onset of my covid, and, I’m finally not coughing (yay!). Still sleeping a lot, but have to say, I do feel better.
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Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 1 week, 6 days ago
Hi Kathleen, I think Ralph meant “FVC” – – forced vital capacity. Or… maybe he meant FRS-R (Functional Rating Scale-Revised). It’s what they use in the ALS clinics to gauge the rate of progression of our symptoms.
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Dagmar Munn replied to the topic Your ALS Travel Essentials in the forum Living With ALS 2 weeks ago
Great to hear your trips to the National parks were good ones. Those are good tips too!
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Dagmar Munn started the topic Your ALS Travel Essentials in the forum Living With ALS 2 weeks, 1 day ago
Have you been able to take any major trips this summer, or just short jaunts out and about? If so, what is the one item you can’t travel without?
When I ponder that question, my mind immediately goes to more trivial things such as my phone, my iPad, etc., but for someone with ALS, or any condition really, other things may come to mind.
So, w…[Read more]
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Dagmar Munn replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 2 weeks, 4 days ago
What sad news! Thank you Kathy for sharing this. It is so hard to imagine losing Marianne – – she was a positive spirit who helped others and was a valuable member of our forum.
Here is a link to her obituary to learn more about Marianne’s vibrant life: https://www.legacy.com/us/obituaries/name/marianne-opilla-obituary?id=35305581
Our thoughts…[Read more]
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Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 2 weeks, 5 days ago
Ralph, I’m still in my 2nd week of recovery but am noticing that the previous week of bed rest and minimal physical movement had a negative effect on my overall strength. It’s an example of “disuse atrophy” and boy, does it happen quickly!. I am slowly getting back to doing my various movement routines… but having to start with lower reps and…[Read more]
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Dagmar Munn posted an update 2 weeks, 5 days ago
Sharing my latest post from my ALS and Wellness Blog: “How I Socked It to ALS” https://alsandwellness.blogspot.com/2022/07/how-i-socked-it-to-als.html
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Dagmar Munn started the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 2 weeks, 6 days ago
I’m currently recovering from having COVID. Ever since it first appeared in our lives I thought if only I followed all the guidelines, I could avoid it. But the variant that’s been circulating this summer seems to have found me.
I’m fully vaxed and boosted so I believe that contributed to keeping my symptoms on the “mild” side and with my o…[Read more]
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Dagmar Munn replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 3 weeks ago
Richard, we do support differing opinions. However, I believe several of your recent replies were deleted because you were posting (repeatedly) long lists of links rather than participating in the topic’s discussion. Each time you posted the same list a private message was sent to you outlining the what and why they were deleted.
Having ongoing…[Read more]
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Dagmar Munn started the topic Summer colds and flu – Does your ALS make them worse or about the same? in the forum Living With ALS 3 weeks, 5 days ago
Whenever I come down with a summer cold I’ve noticed my ALS has an effect on my symptoms. Pre-ALS, I had the usual chills, coughs, and sore muscles. Now, all those symptoms feel super amplified; especially affecting my swallowing and breathing. Thankfully, some Tylenol and a few days of bed rest do the trick.
Have you noticed any changes in y…[Read more]
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
Patty, I agree that you can continue keeping your body moving with at-home sessions, rather than formally seeing a PT. But a PT or OT can give you guidance on what exercises to do.
It’s not about “building up” muscles, it’s about maintaining the muscle strength you have now.
Actually, the muscles won’t break down from overwork – – it is from…[Read more]
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
We look forward to your future check-ins letting us know how you are doing!
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
What a positive report on how PT has helped you through the years! Keep setting those goals…it’s what keeps us pALS looking forward.
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
Rebecca, I’m happy to read that you are continuing your PT sessions. I suggest you keep a focus on strengthening your core. Plus, breaking up your at-home exercise into short sessions throughout the day. That way, you can keep your energy up and not overtax your weak leg & foot. During my 1st yr with ALS I learned the importance of adapt, adapt,…[Read more]
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
That’s very helpful information John, about medicare access. Thanks for sharing it – – and, along with how your PT sessions have been helping. Keeping our ALS-bodies in alignment and moving, I believe, contributes to slowing down symptom progression.
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
Suzanne, that’s good that you still do at-home stretches for your husband between the PT visits. So many pALS rely on only the weekly PT sessions for their movement. But bodies need to move every day – – whether we’re doing the movement, or someone is helping us do it.
I know it takes a lot of your energy to help him stretch daily, but I’ll bet…[Read more]
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Dagmar Munn replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 1 month ago
Mary Jo, …range of motion exercises, every day! Bravo!
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