Kathryn F. Kennedy

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.

I joined the in-person caregiver group the week after my husband’s dX in Jan 2020—it was in the small town where I lived so super convenient! Then COVID hit and the group was switched to online Zoom which I think has worked well. We are still doing the Zoom call once a month and participants are from close-by surrounding counties and the group i…[Read more]

@ 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]

Hi

My name is Gideon ,and I caregiver for My wife with ALS

Anger : Ever hour
Grief: every day
Fear: every Moment
Searching/Meaning  : all over the world try to find any want to answer
Guilt: Do I do good enough,
Anxiety: Every day dealing with the health insurance to provide my wife with right care

Which they didn’t have any knowledge about…[Read more]

I love Lisa’s answer. I was caregiver for my husband for the 6 years he lived with ALS. Eventually we got used to people saying or asking the “wrong things”, although it was always difficult for both of us when overly “helpful” people tried to give us advice on how to “cure” Hal’s ALS, telling us we should try meditation, a particular vitamin…[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]