No Title

Amanda replied to the topic When Should They Keep Their Mouth Closed? in the forum Living With ALS 4 days, 3 hours ago

Wow, I am learning a great deal from all of you that are sharing. So many things that never even crossed my mind. It is amazing how much we can learn from each other.

Amanda

Dagmar Munn replied to the topic Recommendations for tilting shower chairs in the forum Mobility Aides, Assistive Technology and Medical Equipment 5 days, 2 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 5 days, 13 hours 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]

Amanda replied to the topic What is Your Self-Care Plan? in the forum Living With ALS 6 days, 3 hours ago

Katie, you are so right!

Amanda replied to the topic Hospice for ALS in the forum Living With ALS 1 week, 2 days ago

Kathy,

My family had Hospice care for both my father (ALS) and my stepmother (Cancer). We used their services for end-of-life care and they were fabulous. The nurse and social worker were so educated, informed, compassionate and helpful for our family. My parents passed away just 11 months apart so we developed a close relationship with our H…[Read more]

Amanda replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 1 week, 2 days ago

Amy,

Thank you so much for sharing. Your mom was a valuable member of our forums and she helped many of our members with her input and advice. When a family can think of others when they are going through such a tremendous loss just shows how kind and generous Marianne’s family is. Thank you for taking the time and energy to raise so much m…[Read more]

Amanda started the topic When Should They Keep Their Mouth Closed? in the forum Living With ALS 1 week, 3 days ago

When I first started taking care of my father when he had ALS, I referred to myself as his caretaker. I really didn’t see the problem with that term, until much later when a colleague gently educated me about the terms caregiver and caretaker. Thank you, Dagmar.
I was a little embarrassed about my oversight and really thought it should have b…[Read more]

Amanda started the topic Preparations and Planning in the forum Diagnosis Information and General Questions 1 week, 4 days ago

Planning for the end of life is always challenging and emotional, with or without ALS. Having ALS often makes a pALS and their loved ones more conscious of the time we have left together. In order to relieve some of the stress, many pALS plan for how they want to address medical care needs and end-of-life plans. This can provide a sense of control…[Read more]

Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 1 week, 4 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.

Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 1 week, 4 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.

Dagmar Munn replied to the topic Your ALS Travel Essentials in the forum Living With ALS 1 week, 6 days ago

Great to hear your trips to the National parks were good ones. Those are good tips too!

Dagmar Munn started the topic Your ALS Travel Essentials in the forum Living With ALS 1 week, 6 days 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]

Dagmar Munn replied to the topic In memory of Marianne Opilla in the forum In Loving Memory 2 weeks, 3 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]

Amanda started the topic What is Your Self-Care Plan? in the forum Living With ALS 2 weeks, 3 days ago

We know that Self-Care is vital, especially for pALS and Caregivers. Self-care is essential for each of us, and if we don’t prioritize self-care for ourselves and our caregivers, how can we expect others to help us when we need support?

When focusing on how to build your self-care plan, it may help to consider the national Substance Abuse and M…[Read more]

Dagmar Munn replied to the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 2 weeks, 3 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]

Amanda replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 2 weeks, 4 days ago

Our forum members amaze me daily. You all ask and answer some tough questions daily! I’m so proud that I am part of such a unique online community. It’s a bitter sweet experience to be honest. I’m sure you can all understand that sentiment. Carolyn, I cannot even begin to put into words how much I have learned from you. Grace to begin with. Th…[Read more]

Amanda replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 2 weeks, 4 days ago

Richard,

Any time a post is deleted or edited, Dagmar and I consult each other and include the other on the response. The member is emailed and we explain why the post or comment was edited or deleted. In our community standards it is very clear that comments are supposed to contribute to the discussion, and provide information or support. You…[Read more]

Dagmar Munn started the topic Summer COVID Updates – – How are YOU doing? in the forum Coronavirus (COVID-19) and ALS 2 weeks, 5 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]

Dagmar Munn replied to the topic How Your Moderators work Together, and with YOU! in the forum Living With ALS 2 weeks, 5 days 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]