Posted 5/18/23
The LORD is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18
Monday was a very full day. By the time the day was over and I was nestled all snug in my bed, I was spent. Not “whew, that was a busy day” spent…more like “Whew, I just ran the second leg of my Runnin’ Til I’m Purple event” spent. It wasn’t that I was THAT active Monday. I mean, I woke up early-ish and headed to Oak Grove, Missouri to meet my US Representative, Mark Alford. I am his Alzheimer’s Association ambassador and had talked to his team several times, but this was the first time I met him personally. It was a very nice, if short visit. I got to share a white paper from the Alzheimer’s Association and my thoughts about the discriminatory CMS decision NOT to cover Monoclonal Antibody-based, FDA-Approved Alzheimer’s treatments like they do all other FDA-approved drugs. Therefore all new drugs including Donanemab require driving to an Alzheimer’s research hospital often hundreds of miles away 1 or 2 times per month for infusions. This is extremely unfair for a group of people already beat up by the condition…and it needs to change. I shared my take…and then left to the next stop. (Mentally-tired meter at half tank.)
Next stop was my first stop on my June fundraiser. I went to the KC Library District to tour the Board of Trade Lofts and see the stairs that I will walk Day 1 of my 4 day, “4 Corners 4 a Cure” event June 19-22. Katie took me for a tour of this stunning facility. It was a beautiful combination of old school charm and modern beauty. I love this kind of place and would totally live there should I ever move to KC. We took one trip down the 12 floors I will toggle up and down on all day on Juneteenth (the 19th). The sign says there are 14 floors, but there is no 13th floor and the first floor is below where I want to go, so 12x all day it is 🙂
Next stop was the Rally for Access in front of the City Hall. By then it was a toad strangler. (Note: I am from the Ozarks. For those less fortunate, a toad strangler is a super heavy rain.) I got there quite early since everything in my itinerary got off to an early start. By the time I has wandered around the park and ducked for cover several times from the rain, I was pretty much waterlogged, but in good spirits nevertheless. We had a decent turnout considering the terrible weather and we were disproportionately loud! 🙂 I hope some folks heard us and the media coverage helped, because this mess needs to end and people and doctors need to make these decisions, not bean counters.
From there I also swung by a sitting area at a local park to reflect on the day before grabbing some BBQ and heading home. (Note: if you come to KC and DO NOT get BBQ, you might as well hit yourself on the head with a tack hammer…) I stopped at Blue Springs at a place called Lake Remembrance, a fitting place given the day. Mom would love this place as it had a walking trail, fishing, an usual structure in the middle that is a concrete box with water trickling over the edge.
It was a full day. I had to fight back discouragement, not because the day wasn’t full and completely productive (it was that, for sure…), but because things are hard. Mom’s face dropping is worse, no doubt a result of TIAs and other issues within her brain. It was and is kind of bittersweet because even if a cure is found today, we have missed the window to get anything back. My sister was blessed Mother’s Day with mom saying HI!!! when she walked up, which was super encouraging (I haven’t heard a real word from mom in a couple of years)…but the damage is done.
So Lake Remembrance for me was relegated to the past tense for the most part, which does make sense…and, despite the sweet place it was, I left in a pretty melancholy state.
We need to find a cure, and soon…for my many struggling friends, for my wonderful support groups’ folks, for my thousands of friends at Walk to End Alzheimer’s events, and for lots more wonderful folks. However, for my mom we need a cure as a matter of vindication and as a tribute to her nearly 14 year struggle. I will get over this funk I am in, but this disease takes its toll on all in its wake and I am the rule and not the exception.
#EndALZ
#MoreTime
#AccessNow
Update: as I mentioned, mom’s face is drooping much more than it used to. I, for te last 2 years, have only posted older pictures as I would never want to make mom sad to think she was being shown to others in less than a flattering way. She was fairly alert yesterday, which is always nice. Two days ago she had a terrible morning and my step dad had to go in for supper because she threw up lunch. Her o2 level, a sign things in her world are not great that day, was way off…in the 80s. But yesterday things were better. Her new roommate needs lights on constantly (big time fall risk) and mom’s eyes get dry super easily, so we are battling this balance, trying to change the layout and keep both folks feeling ok. One of the real soldiers there, a man with Parkinson’s, passed away over the weekend and it left the staff feeling blue and more business-like than normal. There are good days and there are bad…don’t let anyone tell you otherwise as both are clear realities in this caregiving realm….
