Living Beyond the Diagnosis

Coping with Multiple System Atrophy (MSA)

“Living with a Terminal Disease – Funny, You Don’t Look Like You’re Dying”

In a strange way, that’s exactly what I’m going for. When people see me and don’t realize the battle, I’m waging every day, it means I’m winning small victories. For those of you who don’t know, I’m living with Multiple System Atrophy (MSA), a progressive and unforgiving condition that aims to take away my ability to walk, talk, swallow, and even breathe. MSA is relentless and, to date, undefeated. Yet, here I am, fighting every single day.

I’ve been using CVAC (Cyclic Variations in Adaptive Conditioning), and I can’t begin to express how grateful I am for the improvements I’ve seen so far. My gait and balance have improved, and I haven’t experienced an Orthostatic Hypotensive event since starting it. These may seem like small wins, but in the grand scheme of my battle with MSA, they are monumental.

But let’s be real—I know I’m still dying. MSA has an average life expectancy of 5-7 years, and typically, the last year or two is unbearable. I’m 2 ½ years in. My goal? To stretch out my quality years as much as possible. Imagine if I could push those boundaries and add 5 more years of good quality life. I’d see my oldest granddaughter graduate high school. I’d witness the middle one start driving. And maybe, just maybe, I’d get to see the baby, who’s 3 now, have her first boyfriend (Sorry, Britt & Riley).

Even if it’s 4, 3, or 2 years—who cares? Think of all the moments I would have missed if I didn’t fight for each additional day. I have some of the best doctors in the U.S. working on a cure, and who knows when they might find something? My responsibility is to fight for just one more day, every day. Because that could be the day when a breakthrough happens.

So, not looking like I’m dying? That’s exactly what I’m shooting for. It means I’m succeeding in living my life to the fullest, defying the odds, and cherishing every moment. To all my fellow MSA warriors and their caretakers, never give up or give in. Fight every day for one more day. #FuckMSA

Together, we can inspire each other to keep going, to find joy in the small victories, and to never let MSA take away our spirit. Stay strong, keep fighting, and remember—you’re not alone in this battle.

<<Wink Wink>>

~Coach~

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Coach

With over 30 years of professional experience in the real estate industry, I am a driven, creative, and strategic innovator for real estate technology. I have led the business side of data exchange efforts to lower costs, improve processes, and increase data transparency and sharing, using emerging technologies like blockchain and AI. As the EVP of Strategy at Openn North America, I oversaw the launch and growth of a revolutionary platform that enables transparent and competitive bidding for properties online, with the help of generative AI and conversational AI. I am also passionate about sharing my knowledge and insights with the global proptech community, as the Southern CA Regional Chair of FIBREE, the leading international network for exchanging knowledge between the real estate industry, the IT sector, and blockchain developers. Additionally, I am an advisory board member at TLCengine, a platform that calculates the true lifestyle cost of any home, and a former radio talk show host on “Keeping it Real Estate” Radio. My specialties include early product design and development, human-centered design, management, leadership, and training. I believe in the power of blockchain and AI to transform the real estate landscape and create value for customers and stakeholders.

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