Dec. 29, 11:25PM

 The left arm has been painfully problematic the past 2 weeks or so. When I say painful, i mean actually in more pain than the right arm, which has a diagnosed injury. It, lefty that is, feels like it will still snap out of socket, feeling often very unstable throughout the course of the day.

This has made the left hand a bit tough to move, but overall, I'd say that is exponentially better. Same goes for the left leg and foot. I had a very brief locking/freezing episode on Dec. 23 on my walk to PT(Still no car/truck. Siiiiigh.), but I chock that up to being at the end/start of my 3rd dose. Within a few mins, I was fully functional. 

In fact, on my walk home tonight, I felt, mentally anyway, as though I could run for miles. Physically though, especially with the arms, I don't want to risk it though. But I feel like this is a good step...pun...kinda intended? I desperately need any good news as Xmas was a bit of a downer.

I do wish to do the Staten Suckla......er....Island Memorial Day 5k at the end of May, if Sam approves. If approved, you better believe i'm roping you, Dr. Panov, and maybe Dr. O'Neil into running with me, so be prepared. 

Also on the subject of PT, Sam wanted to know if she's allowed to use electrical stimulation? She was wanting to for the arm(s?),but didn't for fear of it interacting with the DBS. She said it wasn't a top priority as far as treatment goes, but it would help.

Lastly, the below letter is my "Draft Proposal" to...whoever I Need to send it to in order to get the "Looking Up" project re-ignited. Lemme know what needs to be changed, as I just kinda shot off the cuff a bit on it...

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To whom it may concern,

My name is Luke Crisalli. I am a patient at the Bendheim Movement Disorder Clinic at Mount Sinai Downtown Union Square, where I have been under the care of Dr. Katherine Leaver since 2017. On November 19th, 2014, my life was inexplicably changed. I, after many months of testing, was diagnosed with early onset Parkinson’s disease at the age of 32. To say this altered my outlook on life would be a vast understatement.

Actually, At first, I kind of accepted It and figured I’d just live with it, and it wouldn’t be a big deal till later on in life. I guess I didn’t fully grasp the reality of the situation. A few months later and I had changed my tune. I decided to live my life to the fullest, to start really planning that grand road trip I had always wanted to do, to run the NYC marathon, which I completed in 2014, and to really make something out of my photography career. 

2021 would see an uptick in my symptoms, leading to my decision to undergo Deep Brain Stimulation surgery, performed by Dr. Fedor Panov and his team this past July. Feeling a bit empty post-surgery led to severe depression, thankfully though, under the careful treatment of Dr. Shannon O’Neil, I’ve begun to crack through that, and therein I found purpose through my creative side, namely my photography.

I have had a camera in my hand in some form or another since I was a little. Be it a cheap, but sturdy Kodak point and shoot or my father’s much beloved Pentax Spotmatic 35mm (which I still use to this very day every so often.), I always try to capture the moment.

Majoring in photography in college really honed my skills, learning everything from darkroom printing to studio lighting. Despite many personal tragedies and setbacks, including a persistent Asperger’s diagnosis, I prevailed. In May of 2014, just a few months prior to my diagnosis I earned my bachelor’s degree in photography. 

Already acclaimed by many, this made my struggle and hard work worth it. Two months later, photographs I shot were featured in two HBO documentaries, since then, I have focused on various subjects. Be it the waters around New York City, its running community, or Comic-Con cosplayers. 

I wanted to do something more personal though. That’s when it hit me like a bolt of lightning to the clock tower in “Back to the Future.” There, on my bookshelf, was Michael J. Fox’s second book, a favorite of mine, “Always Looking Up: The Adventures of An Incurable Optimist.” 

“I need to photograph happiness,” I thought. But how? It sounded simple at first, but being in my own head, as I often am, I went down a rabbit hole of too many thoughts and ideas. I looked down at my phone to research one when a 2nd bolt of lightning struck (and they say lightning doesn’t strike twice.) “I’m looking down at this thing all the time instead of looking up at the world,” I thought to myself.

And that is where I got the idea for “Always Looking Up: The Happiness Project.”

The idea is stunningly simple, yet immensely poignant. I stand above a subject, or subjects, either on a ladder, step stool, or any elevated surface I can get a footing on so that I can be at least two feet above them. All they have to do is look up at me, the camera, and put on their best smile. I own a portable studio lighting kit I can set up by myself or with an assistant if needed, that only require a few minutes of prep and an electrical outlet, and that would only be required in some interior shoots. All told, the whole process can be done in 2-3 minutes, 6 at most. 

As to what I am going to do with the project, I had always intended on putting them up in a gallery exhibition, and eventually a book, with a large portion of the proceeds going to the Michael J. Fox Foundation

“Ugh, do I really have to smile?” some have asked. Yes. That is the whole point of this. To take a few moments to stop looking down and to appreciate what we have…life, air, whatever it may be that makes one happy. I quickly gathered a few willing subjects and initiated a proof of concept. I managed to get a quite body of work together, viewable on my website, www.LCPhotowerx.com 

Throughout the past 3+ years, I reached out to the Fox Foundation multiple times to seek how I could go about getting their support/guidance but was received no response. The project would go dormant due to this, and the virus, to a point where it all but stopped. This would be until I realized the real people who could benefit from this were those who helped me, that being Dr. Leaver and the Mount Sinai team.

With this new focus in mind, I hope to raise as much money as possible in order to fund the next level of Parkinson’s treatment and care to be carried out by Dr. Leaver and her team.

“I have to get celebrities, athletes, world leaders, influencers, and anyone notable I can get to be in this…somehow,” I thought to myself. However, I am not supremely well connected. A bit reserved at times, I don’t exactly have a celebrity rolodex, so I will need some assistance in getting that in motion. Once the proverbial ball gets rolling however, I am hoping word of mouth will spread, and I will be photographing people regularly. “People know people,” as the saying goes. I also need guidance on how exactly to allocate the funds. I want to make sure they go to the proper recipients, namely the programs and initiatives that will most directly impact people and caregivers with Parkinson’s. 

I do realize the gravity of what I am proposing. It is vast and grand in scale, but I know the result will be beautiful, impactful and will undoubtedly resonate for many years to come.

I thank you for your time and consideration, 

Luke Crisalli

LCrisalli82@gmail.com 

www.LCPhotowerx.com   7188-810-6697