59: Jumping

It was quite the day today - it started off early, with a long drive to the westernmost corner of the state, where I was the “blue flower” at a Walk To End Alzheimer’s event - not the one I’ve been pimping, but another (all to support the Alzheimer’s Association). In case you’ve been negligent about donating, the walk I’ve been pushing is next weekend (and then I’ll stop talking about it, I promise) and I’m $280.00 away from my $10,000.00 goal. Here’s the link, one last time: http://act.alz.org/goto/SeanWalk.

To explain, the “flowers” are a tribute system the Alzheimer’s Association uses:

• Blue: Living with dementia

• Yellow: Caretaking someone with dementia

• Purple: Lost someone to dementia

• Orange: Supporter of the cause, and

• White: Usually just a single person, often a child, to represent the end of the disease.

Today, I made a pledge to myself to try my best to one day, be able to hold the white flower at the last ever Walk To End Alzheimer’s. I would love to be part of a group of thousands of people, happily waving goodbye to this scourge. I think that’s a fairly reasonable goal, no? Every dollar donated helps the potential that I reach that goal.

So, I wrote the following speech to give - which was meant to be given at the pre-walk ceremony:

Thank you so much. It’s amazing to see you all here today. I’m so grateful to be here.

Since getting diagnosed around a year and a half ago, my life has been an emotional roller-coaster. But it’s been on a high for the past half year or so, and that’s pretty much due to my involvement with the Alzheimer’s Association and to my learning that there are people like you out there.

• People like you, who have lost friends and family to this hellacious disease but keep supporting the cause

• People like you, who participate in research based trials to help further the science

• People like you, who are currently caretaking someone with Alzheimer’s and

• People like me - who have Alzheimer’s and are not going down without giving it the fight of its life!

I look around at this sea of smiling, excited faces, I know that there is hope. Hope for people like me and for people like my wife, Wendy, who is facing the loss of her (i hope) best friend. This is a hard disease, friends, and I’m gratified to know that you all know that.

But there’s still work to be done. Thanks to the work of companies like Eisai and Lilly, we have two new FDA approved drugs that are not just symptom maskers, but plaque killers. Thanks to the work of the folks at Fujirebio Diagnostics, along with researchers at Lund, Johns Hopkins and Washington Universities, we now have a simple FDA approved blood test to guarantee that people from all over the world can be accurately diagnosed safely and early.

And all of that is great! Fantastic, even. But it’s not enough for me! Because we still don’t have a cure, and really, that’s why we walk today, isn’t it? For a cure? To fight for a cure?

• We also walk to raise money to allow the Alzheimer’s association to work with the government to ensure continued funding of research grants - without which clinical trials will stop, and years of research and carefully collected data will be lost. That’s why we need the BOLD act to pass and remain funded.

• We also walk to help ensure funding for critical training for rural EMS workers. firefighters and other first responders so that they can recognize that they are dealing with a person with dementia and handle the situation appropriately. And we walk to fund programs that will help PCP’s learn to listen to people when they say that something’s wrong with their brain, and not to brush them off like they did to me - for over four years! Those things are what the AADapt act will do. Let’s let congress know to pass and fund it!

• We’re walking to ensure that caregivers, many of whom have had to quit or severely cut back on their jobs, can be paid for their time. Our elected representatives need to pass the Credit For Caring act, and fund it. The sum amount in America, for unpaid care, is up over 385 BILLION dollars. Alzheimer’s is in the top 5 most expensive diseases for families. That’s a pretty dubious honor. Paying caregivers for their time and effort - even a fraction of that - would help greatly.

• We walk to ensure that the 24/7 help line, which I’ve used - and was instrumental in my own survival - stays operational and remains staffed by the wonderful social workers who’ve dedicated their time to helping people in crisis

• And we walk for our people. The people we’ve lost, the people we’re losing, and the people we will lose. And we walk to ensure that we - right here - right now - are the last generation of people who will have to suffer through this because…

• We walk for a cure.

Thank you…

I quite like it. But I didn’t give it. The walk chair, who was the MC, said most of what I wrote, and left me scrambling to come up with something. Here’s what I came up with. They asked (told) me to keep it under 4 minutes. (Also note the spiffy ALZBlog hat, which you can own for yourself by clicking the link!)

I think it went OK. I’m repeating the effort next weekend at the proper walk, and I’ll refine the talk a bit more.

Then we drove almost all the way across the state so that I could jump out of an airplane. Way back in June, Wendy and I went to a gala fundraising event for the Alzheimer’s association and I somehow managed to bid on - and win - a tandem skydive adventure. I say managed because it was not the first choice of my long suffering wife that I jump out of a plane. Ever. And yet, as is so often the outcome, my long suffering wife’s choice is not what I did. So today, I jumped while strapped to another (far more skilled) person, whose name is Brett, who took his own life into his hands (as he does frequently) in order to help me knock another item off of the bucket list. And boy it was fun. The fall colors were gorgeous, I could see for miles, the weather was great, and… I freaking jumped out of an airplane! How cool is that?

What is really interesting is that you never feel like you’re falling. Sure, while you’re in freefall, the wind is whipping around you and the noise is fierce (and the neck of my coat, which I left partially unzipped, was slapping me in the face repeatedly), but there is never that gut sensation of falling - except for that one brief moment where you commit - and jump out of the plane. After that, it’s all smooth. There is a brief lurch when the chute opens, and then it’s a slow peaceful sightseeing tour from an angle you’ve never seen. Brett let me drive the chute a bit, and I did some donuts in the sky, which was super fun.

Surprisingly, It was not scary at all. I thought I’d have a little fear, but I really didn’t. The group we used, Skydive Pepperell was completely professional, and really nice about it - despite a 9,000,000 page long legal thing you had to sign stating that neither you or anyone you’ve ever met would ever sue them if you happened to get hurt because you knew, well in advance, that you COULD get hurt. Which is fine! I totally got it, and I didn’t get hurt. So, thank you Brett and the rest of the team for allowing me to fulfill yet another dream in this pretty good life I’ve had. And thank you for your kind donation to the Alzheimer’s Association for the gala. (In a sense, I was still doing my advocacy work when jumping, because I donated by buying the certificate, right?)

And I know I’ve said this before, but this disease, Alzheimer’s, which sucks, has pushed me forward in ways that I never had been pushed before and I am doing things I never thought I’d do, and I’m really loving it. So… mixed blessing maybe? Probably not, but still - I am now, and will continue to be, living my very best life and will do so for as long as I can.

And speaking of very best, this week I spun up (clicked on) a track from the brand new, three hour long record by one of my favorite bands (whom I’ve extolled here in these pages before) The Necks. The new album is called Disquiet, and for my sensory (over) stimulation, I listened to the 74 minute long track Ghost Net. I wrote to a friend, right after listening and said: “Ghost Net just cured my Alzheimer’s. 🙂 WOW!!!! Every fucked up neuron in my brain is currently properly aligned!” This is an extremely adventurous and powerful piece of music. Nothing makes sense, and yet, everything makes sense. Throw on a set of headphones (far better) or at least get into a space with a really good stereo, (trust me, it’s really not going to work as well coming out of your phone or a computer speaker. You need the separation of a good set of headphones or a well aligned stereo) divest yourself of all further sensory input (unless you have my lights synced up, which worked really well) and let this wonderful work wash your soul clean.

Beyond all that, I had infusion number 29 last week. No problems to report, which is good. Wendy and I also went Rail Biking last weekend, which was a lot of fun. It’s a two person recumbent bike that you pedal over train tracks. We went though beautiful forests and over a 90 foot high bridge. A really well done tour. Another high recommendation from me!

Earlier in the week, we had to go pick up one of our cars from the shop, about 30 minutes from the house. For some reason, I chose to drive the long way. As we were driving Wendy called out - “There’s a drum set by the side of the road. Do you want to stop?” Well, sure I did - and we loaded it up into the back of the car, and now I have a drum set!!!! I believe I’ve mentioned that I want one before. It was filthy, and I had no sticks, chair or cymbals - but the big part was done. And now it’s clean, and I’ve got a seat and sticks, and am just waiting on cymbals to arrive in the mail tomorrow. And then we’ll see if I can count. I think it will be a really good brain exercise for me, as numbers are getting more difficult. We’ll see if I can ever get beyond 4/4 - but even if that’s all I can do - I can still play the funk. And that will make me happy! I’ll put a picture up in my next post when the cymbals are set up.

I did a great zoom based panel discussion with a group of professionals who provide care services for elderly people (and more). It was informative for them, and a lot of fun for me. I worked with some new (to me) people, and I think we clicked quite well. One of the things we all agreed on is that the face of Alzheimer’s is changing, and that we, the younger and vibrant, are now it. And the care, support and messaging needs to reflect this.

To partially reach that end, there’s been some rebranding behind the scenes. You can still access this blog the way you used to, but you can also get directly to it by going to Alzblog.Net. There, you’ll also find a link to the newly named ALZFiredUP store, which you can also get to directly. That’s where we’re rolling out our t-shirt, hat, drinking vessel and apron designs. We’re not trying to live off of this, just to have some fun and raise awareness. 10% of all profits will go to the, you guessed it, Alzheimer’s Association. We’re pretty regularly updating and adding stuff, so keep checking in. We’ve got some great new ideas ahead!

I’m also really trying to push my public speaking and get more gigs, both with and outside of the Alzheimer’s Association (where I can branch a little further off mission). I have become convinced that it is younger people (high-school) that really need to learn about this disease - both from a prevention and from a “how to deal with dementia in your family” standpoint. So, I’m telling all my former colleagues from the prep school world - get in touch. I’ll come to your school and do an info session. I really think it will benefit the kids (and faculty) greatly.

And also, a little off topic (but not really), I’m really proud of all of you who showed up for the peaceful No-King’s day protests on the 18th. Even if you support some of the initiatives being pushed by the current administration, you should be horrified by the process in which they are being enacted and the callous disregard being shown to a large segment of Americans of many stripes.

And as always,

Thanks for reading!

Dy