Help Big Dave fight his BIG problem

UPDATE! The van is here! See video above!

Hi, my name is Adam Nadelson, and I pressured Cristina and Dave, my dear friends, into doing this. Their story is below.

 

It’s really a hard thing to ask others for help, especially monetary help, and even harder to broadcast that ask to everyone.

The entire time I’ve known my husband (who everyone calls “Big Dave,” just because he’s 6’10” and 400 pounds), he’s always been there when someone had a need – from quietly doing unpaid acting gigs for the USC film students to helping people move to providing computer and IT support for seemingly everyone. When my father developed vascular dementia and could no longer work, my parents lost everything, and a mere four years into our marriage, Big Dave was right there for us - paying to move them to California to live with us while I put my career on hold to take care of them. He’s the sole reason they haven’t been living under a highway in a box for the past decade, and taking them on has been a considerable, continual financial burden.

In 2016 I got my first of two cancers and Big Dave became my caregiver along with taking over my job of caring for my dad. He did double duty for the next 4 years, all the while taking hits and rolling with the punches – literally – he’s a stuntman in addition being an actor, an editor, and a visual effects (VFX) artist. Contrary to the assumptions of many outside the entertainment industry, not all actors are rich – especially when you’re abnormally-sized like Big Dave and are supporting four adults. He did all four of those work paths to keep a roof over our heads.

In December of 2020, he had a gig on the first episode of the new Star Wars show The Book of Boba Fett (now available on Disney Plus!). When he came home from that gig he was really sore – not uncommon for a stunt gig, but this one wasn’t nearly as physical as others he’s done. The soreness lasted for several days, then several weeks, during which time we figured out that every time he used any muscle, from the top of his head to the soles of his feet, it hurt. In January he went to a doctor, and that in and of itself is saying something.

Thus began a so-far-endless series of doctor visits and tests. In the past year, he’s had 112 blood tests, 5 MRI’s (in machines far too small for him), 2 CT scans, 2 nerve conduction tests (with needles stuck into muscles and hit with electricity), and a whole set of biopsies: stomach, small intestine, bone, fat pad, and muscle. Throughout, his symptoms have gotten progressively worse. He started having double vision, then triple vision in each eye, and the images from each eye do not line up with each other, so he sees 6 of everything. This makes simply reading a challenge that ends in a headache almost every day. The muscle pain was joined by a tightening feeling which lasts much longer than the “regular” pain. The harder or faster a muscle is used, the more it hurts and the longer the pain lasts. If he chews or talks too much, his jaw essentially stops working. Sneezing is the worst - he feels like he’s being electrocuted, then has to take a nap. Stunts and acting gigs are impossible now and VFX and editing are getting harder and harder as his vision deteriorates.

Every day is worse than the day before. He’s in constant pain. Literally 24 hours a day, 7 days a week. He rarely gets over 5 hours of sleep a night because of the pain. He has not woken up from anything other than pain in 13 months, and I often hear him crying in his sleep.

So far, 13 specialists at UCLA have been unable to figure out what is wrong with him, but the leading theory is a really rare, incurable, and fatal disease called Amyloidosis. Of all the types of Amyloidosis, the kind he seems to have is the most rare and comes with the shortest life span – generally somewhere between 13 and 60 months. As I’ve watched him deteriorate daily, that estimate seems painfully accurate.  

We moved to central NY as a final “medical hail Mary” – there are a cluster of Amyloidosis specialists at the Bassett Medical Center in Cooperstown, and we’re considerably closer to his family and friends from college. With the assistance of his parents and some dear, dear friends, we managed to scrape together a down payment for a house, and as strange as it sounds our cost of lodging as homeowners is now a third of what we were paying for rent in LA. In the process we also downsized to try to somewhat offset his loss of income. 

Big Dave is now unable to stand for more than 30 seconds without sweating from the pain (and many of his friends know he’s a sweater, but as I write this it’s 1 degree outside and he’s still sweating from pain), and so he must use a wheelchair, and if he tries to wheel himself his arms become insanely painful. When I push my beloved, my efforts are always accompanied by an involuntary but audible grunt as I get all 400 pounds of him moving, at which point he asks if I’ve gotten a hernia yet (we’re still able to laugh, so that’s something). We’re working with insurance to try to get him an electric wheelchair, but nothing off the shelf ever fits him, which means we have to fight to get something that should be a no-brainer, and we will likely have to pay extra to cover what insurance won’t. We’ve been working on it for 3 months so far, and just learned today that the next part of the process can’t even begin until we see another new doctor in a month.

    

Even when we do get over the wheelchair hurdles, we’ll have a different problem – transportation. As-is, Big Dave doesn’t fit in most vehicles, and if he can’t change position his pain becomes unbearable, so his maximum time he can be in a car is about 20 minutes, unless he has room to straighten his legs, put them up, and generally shift how he’s sitting. Even the manual, folding wheelchair makes travel difficult. It’s big and heavy and takes up the entire back of our tiny car, and when combined with my father’s walker, a simple stop at the grocery store becomes a game of 3D Tetris. We need to get a wheelchair van, and even a used one is around $50K. 

The future is daunting, so we try to take it day by day and attack each problem as it comes. Thank you for reading.