Tom Hehir

Hi Susan,

Is the cost you listed for a one month’s supply or for longer than this? Thanks!

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!

Amanda, Thank you for your help.  This is a difficult subject to think about and come to terms with but I guess it’s best to look into it in order to be prepared for the end-of-life.  Thanks again.

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]

Amy, thank you so much for your post and I’m so sorry for the loss of your mother.  ALS is such a horrible disease and causes so much suffering.  We will miss Marianne!

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!

Thank you Dagmar for providing the link to Marianne’s obituary.  I do not know how to do that so I appreciate your help. RIP Marianne

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]