2. Diagnosed

Much to the dismay of my long suffering wife, I’m not much of a cryer. I’m not emotionally bereft, but I just internalize things. Feelings. Now I’ve got to write about feelings. The last time I cried was just after my cat, Rainier, had been quite ungracefully put out of his misery while I lived in Jordan. The euthanasia drugs there were not the equal of ours here in the USA. Let’s just leave it at that. Before that, I cried at a stupid movie about Amish kids that I saw on an airplane. That has become the tongue-in-cheek for every time I get emotional. “Damn Amish kids!”, no matter the issue. I’m leading you on here. You’re expecting me to expand on the copious amount of tears and boxes of Kleenex. Well, there was crying, but it was from Wendy. And from my son, Jonas, although I didn’t see much of that. He lives in Arizona, and we Facetimed him on the way back from the Neuro appointment. He was driving and we were stupid for telling him then. All this to say that I didn’t cry outwardly (except for one time later that week, when I was at the gym. I was on the treadmill, listening to the extremely powerful live version of Midnight In Harlem, by Tedeschi Trucks Band, (this is not the specific version of which I speak - that one was on the live album called Everybody’s Talking) and I broke. I just had to stop, leave the room and sit outside for a bit). I just retreated, as I often do, deep inside myself. It’s taken me a long time to get to the point where I can really talk about this rationally. This blog is a way for me to be measured and analytical about what I’m going through emotionally and physically and I’m going to drag you right along with me. Enjoy the ride.

At the close of the last post, I had just been officially diagnosed with Alzheimer’s. We left the office after making an appointment for the next week to begin the process of getting signed up for infusions of Leqembi (Lecanemab-irmb). I was a shoe in, said the doctor. So we went out to the car and drove about 100 feet, into a shady spot and began to process. We were hopeful, scared, sad, angry and anxious about the future. These feelings have persisted, although I’ve packaged them up a bit in favor of action at this point. But we were months away from that then. For those of you who know me (and others here might have guessed), my brain and my wit are pretty damn important to me. I could, I’ve always said, lose a leg or arm or something, as long as I could read, listen to music and laugh. Well, I was not diagnosed with gangrene of the knee or anything quite so simple. Nope. I was diagnosed with a slowly dying brain. Not much could be worse. 

The absolute travesty of this disease is that there’s no real way to predict your decline. Nobody knows how long I’ve even had it. The PET scan results read “significant plaque”. But what did that mean? One of the blessings of having the Neurologist that I do is that, as I’ve said, he’s a true investigator. But the downside is that he’s crap at explanations. My appointment had been less than ten minutes long. You’ve got it! Next week we’ll get you signed up for the program. My assistant will start the process with your insurance and with Eisai (the Japanese company that manufactures Leqembi). OK. Bye. Normally we’d ask questions but we were a bit shell-shocked. So we had a week from hell. I don’t think either of us slept for more than 2 hours a night. They speak of the five stages of grief. For me (and for Wendy) there were only three. We skipped denial. We knew, innately, that it was real. There was no point in questioning that. There was also no bargaining. Who are you going to bargain with? I don’t even quite understand that one. Of course, I’m not religious, so to me, there’s no higher power to bargain with. If it works for you fine, but for me that’s a non-starter. That leaves three. Anger. Check. Depression. Double Check. Acceptance. Yeah, not yet buddy. Not yet.

There was no distinct separation between anger and depression. They were joint possessors of my psyche. They still pay a visit now, several months in, quite often. Depression shows up more than anger these days, and it’s usually spurred on by an event or a moment that I realize I’ll probably (no, definitely) forget. But I try to get over it. Depression will do me no good. I tried some anti-anxiety meds to help me sleep with no success. Let me go back a minute - when I say “no” to acceptance, that’s not exactly true. Of course I accept it. It's a fact. What I don’t accept now, or ever, is that I can do nothing about it. I’m going to fight this bastard until I can fight no more. That’s also a fact.

I surfed on over to the site listing all ongoing clinical trials to research my options. I was presuming, of course, that the Leqembi would be my primary medication, and there’s no point in taking an unknown if there is a known to try. We went through that with Wendy (who participated in three clinical trials for an autoimmune disorder). At one point she was enrolled in a trial for a drug that promised to be a cure. The downside was that she had to go off a specific drug that was really working for her. It was clear after a few weeks that she was on a placebo, and there was only deficit in staying on the trial. I found a non-medical research study out of Northeastern University in Boston that looked really interesting. It is studying the effects of music and gamma light on the brain. I wrote expressing interest. I’m enrolled in that trial now, but it took months for a reply (I presumed because it was a school, there was vacation involved, but still - people need to learn to respond to email in a timely manner, even if it is to just say “wait”.)

Eisai reached out to me instantaneously. They are really doing a great job of keeping people informed, and getting folks excited about Leqembi. They reached out to my insurance company, who told them my treatment would be covered in full! That’s huge. This is no cheap generic medication folks. Things were looking really hopeful, and through the overarching cloud of dismay, there was a glimmer of light. I had spoken to my family by now, but had not reached out to many friends. In fact, for many friends, the announcement of this blog is the first they’re hearing about it.  I’m sorry about that, but it was/is still really  hard to talk about. I’m getting there. Jonas and his girlfriend started asking me to move to Phoenix, which we are really considering. I don’t think I can leave my insurance until I hit Medicare though, so it will be a little while. It’s super nice to be wanted though. So, even through the noxious haze of depression and anger, we did what we could to move forward. Medically, financially and emotionally. We started the process of applying for Disability through Social Security, which is still ongoing. All while we were excitedly waiting for the next appointment, where we would begin the process of getting Leqembi.

I think it important to close this on the fact that the other night, I had a bit of an epiphany. When I talk, tell stories, engage or converse, I often struggle, since the TIA, to find words and maintain the track of my thoughts. Again, for the most part, unless you know me, you’d never know. But I know. But I also know that that DOES NOT happen when I’m writing. I need to explore that in depth. I know it’s all about neural pathways, but clearly the pathway that is broken here is the one between my brain and my mouth. Not my hands. I really need to explore that. Wendy suggested that I try, when stumbling to verbally finish a thought, to think about what I’d write, rather than what I want to say. I’m going to experiment with that for sure!

Thank you for reading,

Sean