Kristina here, typing for my mom. You may also know me as Daughter #2. That’s it from me. The rest is mom’s.
We went to our UCSD ALS clinic appointment the other day. I continue to lose weight, but I don’t recommend ALS as a weight-loss program. In the three and a half years we have been going to the clinic I have lost nearly fifty pounds. But then, I started this journey with way more excess poundage to begin with. So, no worries on that account!
My hospice doctor had asked if she could observe how they run the clinic, so it was good to see two of my favorite doctors in one day.
We talked about maybe making some changes with some of my medications. My panic attacks were not happening as much so it seemed like a good idea. But, before any of those changes were made, the attacks returned with a vengeance. I am worn out and sore from these violent attacks. In fact, we could not make it to our support group meeting last Saturday because, even with a dose of morphine, as we drove to the meeting, I began feeling like I could not breathe and went into complete panic mode. That was that. We had no choice but to turn around and go home. I was out of it for most of the day. Since then, I have had several more episodes. Not fun.
Oh, the thrush culture came back negative. So, what is in my mouth then? I have heard of one other late stage ALS patient with the same complaint of “something in my mouth.” Does anyone else out there have a similar complaint? Just curious.
I don’t expect to be going out anywhere from now on. This is just how it is at this point. There are things I would love to see and do but it is just too difficult now. And I am okay with this. My choice. I have always been a homebody anyway, so this suits me just fine.
1 The Lord is my shepherd, I lack nothing.
2 He makes me lie down in green pastures,
he leads me beside quiet waters,
3 he refreshes my soul.
He guides me along the right paths
for his name’s sake.
4 Even though I walk
through the darkest valley,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
6 Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord