Jim

I have always loved the quote “Taking care of myself is not an act of indulgence, it is an act of self-preservation.” Especially now that I have ALS!

In my post “With ALS, Self-Care Isn’t Selfish, It’s Essential” I share tips and ideas that anyone can use.

The current covid variant seems to be super-contagious and hits hard. My recent experience with covid reaffirms my commitment to follow all the guidelines and wear a mask in public. ….when at the grocercy store and I am riding my mobility scooter, I realized that it makes me shorter than the shoppers around me – – and they are breathing “down”…[Read more]

Thank you Jim for this detailed and informative post!

A couple of questions for you…

Regarding voice banking, I never was convinced that the effort of doing all that recording was worth the outcome. It seems most pALS (you included?) use the synthesized-you-voice for novelty applications. With the proliferation of computer-generated voices…[Read more]

@Jerry

Are you on Facebook?  There are several ALS groups on Facebook.  We could start a FB group for fALS and start there. I’ll do that today.

Angel, let me do some research and see if I can find anything.  I’ll update you in a day or two.

@ 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.