Folks, I’m going to take a brief break from the music for this. It was an eventful weekend for me, and promises to be an eventful week here in America, and I want to touch on some things, many of which have been tossed around on these pages in some form or another.
The first thing, and the big elephant in the room, is the inauguration happening on Monday. I am not going to parody all the bullshit 24 hour news with my predictions about what is going to happen or not. I will say that all the fears I’ve articulated in the past are still prevalent and have been exacerbated by the rhetoric and personnel choices of the incoming administration. Nothing that has been done or said since the election is giving me cause to relax about that. But I do want to say this: I have my thoughts and beliefs. Anyone who reads this knows what they are. But the purpose of this blog is to help me (and others) navigate a really shitty diagnosis, situation and prognosis. And for that, no matter your political or religious beliefs, we are completely aligned. We have a common enemy and that is the Amyloid Plaque infecting our (and our loved one’s) brains. For that we are brothers and sisters in arms, and I grieve for you having to face this. I (and we) have no further control over what happens to our great country - except for our votes in two years. We do have a modicum of control over how we treat our brains, and about how we handle our diagnosis. I really hope my efforts here to communicate my process are (and will continue to be) helpful.
Two days ago I had a conversation with a doctor who is running some clinical trials. I reached out to him because I contact EVERY trial I read about in hopes that I can do more. He called me, and after a brief chat he told me I wouldn't be eligible for anything he’s working on because I was already getting the gold standard of treatment (Leqembi), and that any medicine based trials would either contradict that treatment or give skewed results. Fair enough. That’s what I expected. But I hope each time, and I continue to hope. But then he started to make some suggestions about things I could further do to help stave off the progression. I’m going to bullet point them for brevity.
Get your hearing Checked.
Done. First thing. New (expensive) hearing aids purchased.
Exercise your body.
Not as much as I should - but still doing something.
Exercise your mind.
You’re reading it. Plus there’s the Storyworth project, and daily word games. No guitar playing yet though.
Lose weight (if necessary). Manage blood sugar and blood pressure.
Nearly 50 pounds lost. A1c at 5.1 and BP holding at normal.
Get a good night's sleep.
Yeah… That one is still a struggle. But I’m looking into an implant for Sleep Apnea (since I can’t tolerate CPAP)
Keep your head out of the sand
I think we’d all agree with this. I’m burying nothing.
Have fun with the time you have.
I’ve elected to dispense with the fear and anxiety when possible. I will no longer allow myself to live that way. This is one of the most important points.
I also mentioned to him that I was doing sensory stimulation in the form of lights and sound. That I was taking Lion's Mane mushroom extract and continually exploring new innovation on the brain research front. He told me that he had never talked to anyone as on top of their diagnosis as I was. That normally, he spoke to broken and distressed souls (which I certainly was this past fall), and that he was excited for my prognosis. The words ROCK STAR were tossed about! So I feel really good about that and about myself.
A couple of other things happened this weekend that I want to share my thoughts about. The first is that Wendy and I helped a relative with her Healthcare Proxy. This is a pretty straightforward process - but is absolutely necessary for all of us - even if we’re in perfect health. Think about how you want to be treated when you’re ill and unable to articulate for yourself. Get it in writing. It can be changed, but if you don’t have it you might not get what you want. There are directives specific to Dementia - which adds a lot of ripples to an already complex process. Pick your people, and communicate your desires. Non-negotiable.
The second thing is that we had to say goodbye to a dear friend and mentor to both of us. This led us into conversation about wants and desires that are not part of a directive or proxy form. They’re not about medical treatment (or not) but about the connection and communication needs as death approaches. This is, of course, extremely complex. Especially when one is contemplating dementia, hospice and the potential need to end one's own life. We spoke of dying alone. We talked about whether to actually tell someone who is not lucid that they were dying and the best ways to handle goodbyes in that situation. We talked about who would be in the room. What music to play. Where to do it. Loads of complex and sad concepts. My point here is that while you might think that getting an advance directive and health care proxy in order is enough, it’s really not. And for the sake of those who love you, it’s imperative to address the myriad little issues so that your grieving loved ones aren’t forced to make the hard choices. And that’s far more than a DNR.
OK! Thanks. I’ve got some great music queued up for future posts. Stay tuned!
Thanks for reading,
Dy.
The journey is a process, my love. We can do hard things with great love, and we'll continue to explore these tough topics. Never considered these topics in this lifetime, but we are not immune to struggle. I remain so proud of you as you stare this bitch square in the eyes. You are courageous and brave. You are still a pain in the ass, and I'd have you no other way. And when the end comes, I will be there. I will always be here.
Deep breath taken here. Communication can be tough. Henry was also a 'rock star' in that he educated himself (and me) to the nooks and crannies of pancreatic cancer. Although we were fighting a different battle than yours, our love and outlook remains the same. The process - I kind of hate that word. But, it is a process. I am so proud of Henry and what he endured and through it all, he took care of me. Our conversations were straightforward, honest and always spoken with love. And HUMOR. One night he was at the table with books spread out with a highlighter. I said, "what are you doing?" He replied, "I'm expanding my knowledge base!" What? I cracked up and asked Why? You're dying - to which he smiled and said (ala Monty Python) "I'm not quite dead yet," And proudly announced he would continue to learn something until his last breath. And another time, sitting on edge of bed, on a particularly hard day, he addressed the 'process - "There's got to be an easier way to die." My heart exploded. I admire the two of you. I admire the courage it takes to even put yourselves out there. I respect the sharing and honesty. Wendy, I got you.