Recent content by Herdaughter

Paul, I am thinking about you and Ferd right now, so I thought I’d send you a little note of support and love. WE are here for you.

Dear Paul, I am so glad you get to take leave without a total whack financially. That is huge! I have frequently thought a fund should be set up to help patients with caregiving costs. The ALS Association has been awesome with equipment (walker, wheelchair, etc) but it’s still incredibly...

As I read through these posts I hear some of the strongest people I “know”. The level of care, both mental and physical, is beyond anything I’ve ever witnessed before. I’m sending virtual hugs and as much tranquility as possible, to all of you. The relationship situation with mom still remains...

Dear Paul, I’m sending you a huge hug and love. Megan

Buckhorn, I’m so glad you are having a good time on your trip. Do you think the warm weather is helping your PALS? My mom gets so cold. I imagine she would feel much better in a warmer climate if she would let anyone help her. For the first time, I stayed home when my mom went to clinic - and...

Oh gosh Lenore - I am right there with you. I’m so sorry this is happening. I’ve had to take a huge step back from my mom and I feel awful but I was mentally and physically giving out and that doesn’t help anyone. My own doctor told me that sometimes people need to fail before they are willing...

I am in constant awe of all of you who are full time caregivers for your PALS. You are amazing folks. My heart goes out to you. Much love avocado.

Paul I am so sorry for your suffering. I can’t begin to imagine how this feels at this point in my mom’s progression. To have such an amazing partner in you must be of great comfort to your PALS. My heart goes out to you and your partner. May you both be surrounded with peace and love.

I think you’re right ~ it’s just so hard to do.

Oh thank you. I am her next of kin, so maybe that’s enough if she is diagnosed in Oregon. I have been to all of her appointments with her so her neurologist and team know me.

The only good news is that mom’s clinic was moved up so she gets to see them in a week or so. The bad news is she may not let me go with her. She is not at all pleased that I’m only going to be with her when other folks are present given what she has told people about me. She actually had two of...

I am soooooo sorry. Definitely contact someone about the breathing of you don’t want to do it yourself. My mom is doing the same type of stuff. Doesn’t use the AVAP but is doing Radicava even tho the neurologist said that it’s the AVAP that’s going to give her the most benefit. I’m so sorry...

Taking all of your hugs and wise words down to see my mom. I’m also taking my awesome husband with me. After talking with social worker, MY therapist, HER friends and MY friends and OUR cousins, I’ve decided to always go down with a buddy as she’s so unpredictable. The good news about that is...

Ok, emailed social worker and cc’d mom’s friends. A lot of this need to go to the doc so thought I’d make it easier for her. Let’s say we all wake up from this nightmare now and go back to life as usual. I hate ALS!

Yikes - just after I wrote my last diatribe, I got this message from one of her best friends. “I am afraid also now to go alone as I think she is not thinking straight and she could say anything. I don't trust anything she says now. I am afraid she is alienating all the people that are...