Pat Knight

@ Gideon

It sound like a very difficult situation for both you and your wife, and I’m sure that is an understatement.  Have you reached out to the ALS association or Hospice? https://www.alstexas.org/  Sometimes these organizations can help provide some care and support and answer some questions. I’m sure you are doing the right things for your w…[Read more]

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

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]

Katie, you are so right!

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]

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]

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.

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.

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

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]

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]

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]

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]