55: Champion

It’s been a good week since the last post. I’ve done three (count ‘em) speaking engagements including one on local television. Watch it here. The other two, while great, were more confidential in nature and I cannot share many details on them, but… I’m getting out there pretty constantly, and enjoying every minute of it. One of the talks was a web based talk to a group I’ve just joined - Dementia Friends - who are an international group that sponsor sessions on how people’s lives are affected by dementia, and how to best relate to those afflicted. It’s super stuff, and I’m proud to have become a “Champion” and will be actively seeking to lead sessions, peppered with my usual wit and je ne ses quoi! If you think you know a group (easiest in my home state, MA, but not impossible to branch out) that could benefit from this, let me know. The talks are either in person or via Zoom, so distance shouldn’t be an obstacle. It’s yet another opportunity to make my voice heard, and to raise awareness around this bastard of an illness. The other talk was for a pharmaceutical firm, and was the most formal that I’ve done. I really enjoyed it. And I learned some good stuff during conversations. I love science, and I love the processing power of those that love science. People who deny science scare me.

Now I want to talk a little bit about Alzheimer’s and its general impact on me - and on the world - and what I think needs to change about how things are presented. Alzheimer’s is a sad thing. People who get it get sad, people who love those who are afflicted get sad and people who lose those they love to it are sad - often forever. However, I’m tired of sadness. I’m still here, happy and full of life - whatever I’ve got left. I’m living it to its fullness, and I want to embrace the disease (honestly) and become even more powerful than I ever was before. But I went looking online for paraphernalia - a hat, shirt, postage stamps, etc - so that I could support myself and others with this illness and everything was sad and sappy. I could not find a single item that I wanted to spend any money on. I know that the upcoming Walk To End Alzheimer’s is a joy filled event, and the AIM forum last June was also filled with good cheer - so there are moments of levity surrounding this generally sad issue - but for me, I need them to become the norm rather than an anomaly. I’ve tried, with this blog, to address this disease with as much humor and good will as I can - and I know that many of my fellow advocates feel the same. Right now - I don’t want to be looked at with “sad eyes”. I want to make jokes and tell stories. I want to share laughs and good times - because I’m here now with everything. And I know I won’t always be (and I won’t lie - every once in a while that thought creeps up on me and knocks me down - but I ALWAYS get back up). There are serious issues at play here - and I’m not saying it’s OK to mock me (or others) for forgetting something or using the wrong word or calculating something wrong. That’s not OK. But in general, I appreciate an Alzheimer’s joke like: Alzheimer's protesters march chanting. "What do we want? Better treatment... When do we want it? ...Want what?" and, as I’ve said before, I want my life to be celebrated with humor - which is how I’ve tried to live it. So, I’d love to buy an Alzheimer’s support postage stamp, but I’m NOT going to get this one:

Ever. It doesn’t speak to me at all. And, personally, I don’t know that it helps the cause much. As more of us get this disease earlier, it’s essential to find a new way to present it so that we can continue to live our best lives with a sense of joy - not one of dread. (I know the Alzheimer’s Association is working on that, but it’s not the overarching pervasive presentation.). I’ve got ideas, which (once they are better fleshed out) I will roll out here. But beware - Alzblog merch is coming your way!

And speaking of lives, I finished the Storyworth project, and got my hard copy. If any of you are masochistic enough to want to read even more of my ramblings, let me know and I’ll tell you how to order one.

It’s a neat thing to have. But I’ve moved on, and am now deep into the writing of my book, which I think will be fab! I’ve enlisted several friends (who have graciously volunteered) to help by posing questions they might like to see answered, and will put it out here as well. Although the book will cover the same timeline and trajectory as the blog, it will be different - with much more depth to research and history and less of the political and musical meanderings. It will be my guide for helping people navigate their first years with the disease. So, if you think of something you’d really like me to address, please put it in the comments or a personal message. I’d love to know your thoughts.

I had infusion # 27 the other day.. It went smoothly, with only one attempt at finding a suitable vein needed! Cheers to nurse Catia for the decisive needlework!

Wendy and I were out at a local food fair the other day, raising around $150.00 for the Walk and promoting Alzheimer’s awareness. It was a beautiful day, and we had a great time hanging out and educating people about the disease, the walk and this blog! We had a lovely encounter with the woman who owns Bang Bang Body Arts, who came by, unasked and donated a $100.00 gift card for a Tattoo or Piercing at her shop! This is an excellent opportunity for local folks to get their first (or more) ink or piercing. We’re doing the raffle in a similar way to the Beacon40 one. Each ticket will cost $1.33 paid via a walk donation to: http://act.alz.org/goto/SeanWalk . Multi raffle entries can be done by math. 2 Entries is $2.66, 6 entries is $7.98. 10 tickets will only cost $13.30. You get the picture.

And finally, the winner of the Beacon 40 light (We sold 46 tickets for this item and raised almost $360.00) is: SANDY!!!! Sandy was so happy to get my call that she won! It’s gratifying! Thank you Beacon40 for the generous gift. I hope you get another convert! And remember, if you didn’t win, there’s a coupon available for you to buy one on your own - SEAN80 - which will get you $80.00 off the light!

Thanks for reading,

Dy