1. A little history

In the beginning of June, just before I turned 61 I was diagnosed with Alzheimer’s. While this was incredibly distressing, it wasn’t really a surprise. I had been noticing cognitive issues for several years. I went in for basic neurologic testing, and walked out with some harsh knowledge. Gaining this knowledge took some time though - so before I go on to the details of the now, I’ll fill in the past.

In 2018 I had a TIA - a mini-stroke. Ever since then (if not even a little before) I noticed a difficulty parsing sentences - hunting for words and getting lost in a tangent. I was forgetting things, and becoming increasingly disorganized. However, unless you knew me well, you’d not be aware. Even today, as my wife and I notice a greater decline, new (and most) acquaintances have no idea. That’s great news! But I know and Wendy knows and my kids know.

So, for years, I moved along, thinking I was dealing with the relatively minor long term effects of the TIA. Covid19 came and never left. I was lucky, despite living in Florida at the time and working for a denier, that I never got it. In fact I didn’t ever get it until February of 2024 - and a relatively minor case at that.

Flash forward to 2021. My first grandchild was born, and Wendy and I moved to Virginia to be near him, and to help his parents out when possible. I remained concerned about my mental status, but could not get a doctor to take my concerns seriously enough to send me for testing. Again, I present well to the uninitiated. I guess too well. (The state of health care in Virginia was dire in many ways. There wasn’t a lot of medical curiosity among the doctors we encountered. Wendy had a long untreated tumor in her spine that nearly paralyzed her, and the neurologist we saw didn’t bother with any extended MRI’s.One and done.) In early 2023, we decided to move back north, to the only area we ever considered home - the Pioneer Valley in western Massachusetts. We put off our healthcare issues, with the understanding that we’d find better care in the north.

Flash forward (again) to later in 2023. Finally settled in our new home and insured, we began the process of finding doctors. It took over three months to get the initial appointment with our new Primary, who - for the most part - actually listened. First up was getting Wendy looked at. She could barely walk and was in great pain. At this point we had absolutely no idea what was the cause. She got sent to a Neurologist who really listened to her and ordered an MRI on her middle back. It showed some minor spinal decay, but nothing that should be causing the issues she was facing. However, small, in the upper reaches of the scan was an anomaly. Enough that the doctor, a true investigator, ordered an upper MRI. Of course, insurance wanted Wendy to do some PT before approving the second MRI. Thankfully, the doctor insisted, and several weeks later, Wendy went in for the new MRI. At her follow up, the Neurologist told her she had a tumor compressing her spinal cord, and told her she should see a Neurosurgeon stat. Wendy reached out to a former student, now a doctor, and asked for advice. After consulting with some specialist friends, he recommended a doctor in Boston. Wendy had the Neurologist send her referral to him. The Neurologist recommended a doctor in Springfield as well, and sent him her images and a referral. This was on a Thursday morning. That afternoon, she got a call from Springfield asking her to come in immediately. The doctor would wait for her. So we went in. He told her she needed immediate surgery, and suggested he would bump someone off his schedule to get her under the knife right away. Turns out she was days from full paralysis, and we were lucky to have found him. The Boston guy never even responded. There was a tremendous amount of healing needed  for Wendy’s wound, but in general, the symptoms of her tumor went away immediately.  She was truly healed. And then it was my turn.

I’ve had a plethora of medical issues diagnosed in the last year - many have which could have contributed to my Alzheimer’s. Diabetes (my sugar spiked to over 400) - now completely under control, sleep apnea - still working on a management technique, and more. I’ve spent a lot of the last year dealing with - and managing - these issues. I’ve seen Endocrinologists, Pulmanologists, Cardiologists and finally (and most importantly here, Neurologists. Aside from the Alz, I’m now in better shape than I’ve ever been. So that’s good - and all part of my ongoing work to stave off the decline. 

Flash forward (one more time) to early 2024. Because of my thought that my cognitive issues were related to the TIA, I didn’t put high stress on the Neuro, instead focusing on those other more pressing issues. I thought I was going to get a baseline evaluation, and that’s all. Easy, right? Let me add here, that I believe that I have a family history of death due to causes related to dementia. I’ve always worried about that, and it was part of my presentation to the brain science professionals that I saw. The process began with a referral to a Neurologist (the same guy that found Wendy’s tumor) from my PCP. I also had to see a behavioral therapist and take the MOCA cognitive assessment test. This, for what it’s worth, is the same test that Donald Trump famously passed. (Person, Woman, Man, Camera, TV - remember? You couldn’t escape those words for months!) The test is more than that, but still only a 10 minute process. Draw a clock face, differentiate between a hippo and an elephant, draw a circle, etc. I passed everything except those damn five words. I didn’t get a single one. And that’s indicative of the state of my brain. My long term memory is (nearly) fine. My sense of place and time is fine. My short-term is completely shot. There’s more, but I’ll get into it later. No spoilers here!

That failure (which put my score at 25/30) was enough for the insurance company to approve the Neuro diagnostic sessions, which I thought would be more cognitive testing. However, I had, as I think I mentioned, finally found a doctor who listened. I will add that I don’t think I’ve ever met a guy as far north on the spectrum as this one. He’s (as proven before by Wendy) dogged in pursuit of answers. He was completely uninterested in family history. It meant nothing to him. Test results (the 25) and my reporting of memory loss and confusion were all he needed. I was referred out to get an MRI, which was followed up with blood work. The results of these tests proved that I did not have any thyroid issues or wounds on my brain which might have been causing the cognitive decline. This pushed me into Alzheimer's territory. The doctor had been telling me that there was a hot new drug, just on the market, that was reporting a 30% slow down in the progression of the disease. He wanted me to get a diagnosis, if necessary, so I could start taking this drug - Lecanemab. So I had a PET scan. This is basically a CT scan with radioactive dyes injected into the bloodstream. And then, I went back to see the Neurologist for the reading. However, I got the results of the PET scan in my on-line portal before the appointment and read the words “Positive Neuraceq Scan, suggestive of significant Amyloid Neuritic Plaques” and knew what was coming. My appointment was on a Monday, and those results came to me on Friday. That weekend was as tense as can be. My doctor has absolutely no bed (or chair in this case) side manner. He pulled up the chart and said. “Yep! You’ve got Alzheimer’s!”. (If anyone has watched the show The Good Doctor, Imagine Dr. Shaun Murphy delivering a death sentence to a patient. That’s what happened here.) 

The next episodes of AlzBlog will focus on the period between that horrible day and now including insurance battles, the five stages of grief, cognitive tests, infusions and clinical trials . And then I will get into a more by the moment process, with hopefully some reflection on life, and visions for the future. And I promise to make you laugh if that’s possible. My sense of humor is dark enough to pull it off, I think. I can only get through this if I can laugh a little. Otherwise it’s overwhelming. 

Thank you for reading.

Sean