54: Booked

It’s been a slowish bit, since my last post - but I didn’t want to leave anybody guessing! I had an MRI the other day, to celebrate my first full year of Leqembi infusions! I’ve not met with the neurologist yet, but read the report on my portal, and there are no issues (they are only looking for brain bleeds due to the Leqembi) to report, so my visit to the neurologist will be a waste of time and 18 bucks. The only thing I’m going to ask him about (and this is really good news) is the FDA (yes, we still have one (for now) approval of a subcutaneous injection for Leqembi maintenance after the initial 18 months of treatment. I can’t even begin to express how amazing this breakthrough is. Hopefully, that is the path I’ll be able to take, and hopefully I’ll still have health insurance and it will be covered. I never thought I’d be celebrating the freedom of not being tied to an infusion schedule in my life - but here I am!

The hardest part of the infusion routine, which has filtered into my general bloodwork and contrast dye life, is that my veins are becoming increasingly uncooperative. My last infusion took 4 probing attempts with the needle before a suitable vein was found, and it took two technicians 20 minutes and multiple attempts to get the contrast dye into me for the MRI. I’ve given up on giving blood for now, which sucks (vampire pun intended). But speaking of needles…

I finally took the plunge and got my first ever tattoo, inspired by my recent life. Here it is in all its fresh and surprisingly unbloody and unpainful glory:

I’m really happy with it! I tried to get specific music for it (Your Mind Is On Vacation And Your Mouth Is Working Overtime OR Can’t Find My Way Home) but the artist, who was great, said it made the tattoo far too complex, so I’ll let some of my more knowledgeable friends try to read it and see if it is any sort of song at all. I don’t think so. I also wrote Bill Laswell’s wife on Facebook to see if she (and he) could dig out the score for the bass line of the old Material song Memory Serves, which I wrote about in post 50. Bill and Yoko were as gracious as can be, and honored that I would consider using his music on my tattoo, but were unable to dig out the score, so I moved forward without it. I thank them for trying and for even being open to it. Bill is quite unwell these days which makes me sad.

We had a tag sale this past weekend, during which we promoted, raised funds for, and sold raffle tickets to benefit our Walk To End Alzheimer's Campaign. We were able to raise over $500.00! Our team is now the top team EVER for our specific walk, with over $26,000 dollars raised - but we’re still not yet in the top 50 nationally or at our $30,000 goal. The drawing for the Beacon 40 light is winding down, with the draw being held on September 15. There’s still time! Donate (at the walk link above) in multiples of $7.77 (in honor of the 7,000,000 Americans with Alzheimer’s) to secure a ticket (s) to get this great device! Our other raffles are ongoing as well, but are more local in nature. The walk is on October 26, and I’ll be speaking at the pre-rally!

Speaking of speaking, lots of upcoming engagements. Next week I’ll be addressing the employees of a large company in the nearby big(ish) city as they kick off their walk campaign. They’re a huge donor and I’m honored to be asked. I’m going to be on the TV next week too, doing a program called MassAppeal. Hopefully I’ll be able to secure a link to it, which I will post at a later time. Wendy and I are also working with a local boarding school to get them to bring a team to the walk and help raise money. I’ll be addressing the student body in an assembly in a few weeks. And, we’ve got a fundraiser at a local Ice Cream shop who are offering a percentage of their daily sales as well as an opportunity to set up a table to provide information. So that’s cool! And, I’ll be doing a web based Champion Check In for the local Dementia Friends Network. And I literally just had to decline an offer to speak to Eisai, who makes Leqembi, because I’m already booked that day. I’m hopeful that I can do it over Zoom, because I’d really love to be involved with that one! And I had to turn down a talk at another large company because I’m booked with the aforementioned Ice Cream thing. I’m becoming, at least during walk season, a hot commodity! That’s not a bad problem to have, by the way! Being overbooked is a good thing for me.

But... I’ve also reached out to the Hemlock Society to see if I can do any advocacy work for them! I’ve exchanged emails with the president who seems receptive. This fills a hole for me as the Alzheimer’s Association is purely focused on the cure and better ongoing care and diagnosis (which is a great thing that I, obviously, support 100%). The Hemlock Society is focused on ensuring that those of us with a terminal illness have the right to end our time when we want to - as has been discussed in these pages before. It’s yet another (reluctant) passion of mine. I feel I would make a great advocate for them, because I’m actively doing my best to stay alive and to get healthy, but know that in time I may need to make a choice. I really believe people need to hear about that, from positive forward thinking people like me. And, as we all know by now, I’m absolutely thriving on this. It’s becoming a near pathological need. I can’t sit quietly. I do know that there’s a lot of other stuff that needs speaking on in the socio-political world, much of it I am in profound agreement with - but this is the hill I’m choosing to make my stand on. And so be it.

One day later, I’m editing to add that the Eisai talk might be on, because Nicole, my “handler” for the talk is trying to get the date changed to accommodate me! That’s pretty awesome! Also today, (speaking again of books) I finalized the Storyworth book and ordered a bunch of print copies. That’s been a year long labor of love, and it was awesome reminiscing. I’ve had a pretty darn good life in retrospect! And yet I am glad to be done with that project, because for now, it’s all about the future for me. I want to look forward with my newish positivity and take in everything that I possibly can. Of course I’m going to keep up with the blog, which will continue to document my current state of mind and wellbeing while…

Beginning my next project which will be…

A BOOK!

This blog will be the starting point of it - at one time I thought I’d like to just print the blog with annotations from a year later analyzing my attitude at the time and how I feel now. Wendy would also write her thoughts on the posts in a hindsight view. I do think that would be interesting, but as I said, I don’t want to spend so much time in the past. So I will write a book, entirely new, detailing my first years (ok, so back to the past but shining a different light on it), but chronicling more of how I coped and am coping now and analyzing some of the pathways that got me here, while getting into far more detail on some of the science and medical data that I’ve researched. Maybe a little less ranty and maybe dispensing with some of the music content. In some ways it will be a self-help book, hoping to serve as a positive guide for the newly diagnosed, and in some ways it will be more than that! We’ll see how it turns out. But if anyone has any toes in with a publisher, I’d be grateful for the introduction. I DO NOT want to self-publish this. I think it deserves a real push from a real reputable publishing house. But that’s just me!

I’ll end on this kind of funny note. I wrote, way back in entry number 20, of my trip down to Baton Rouge, New Orleans and Memphis with Jonas. While there we saw the North Mississippi Allstars play at Tipitina’s night club. It was a great show, starting with the opening band who were called Magnolia Boulevard. They performed that night in a stripped down acoustic duo setting and were pretty good. So, when I saw that the full band was playing up here near me, I bought us tickets, and Wendy and I went to the show. Now, click the link above and look at the bearded guitar player. Specifically, look at his hair. Now, I want you to think about this. For this show we saw, his hair was about 4 inches (or more - I didn’t measure it) longer, and was beautifully coiffed. AND he had a fan placed just at his pedal board blowing upwards. Making his hair, all beautiful and shiny, fly in the wind! ALL NIGHT. And he played (well, I might add), and posed, and his hair waved around his head - and I could not get beyond it. And neither could Wendy. After a half hour of snarky comments (and me blowing vaguely into her hair constantly) we had had enough, and left. They just weren't good enough (let’s call them third-tier Tedeschi Trucks Band clones) to suffer the indignities of the photo-shoot hair model. I know it’s shallow, but there you have me.

And, as always, Thanks for reading,

Dy