Living Beyond the Diagnosis

When you hear the words “you have five years to live,” it’s nothing short of a seismic shock to your entire existence. It’s not the kind of news you can easily prepare for, no matter how much you’ve contemplated the hypothetical scenarios of life and death. Suddenly, you’re thrust into a reality where time becomes an agonizingly tangible thing, ticking away with every heartbeat.

I remember that day as if it happened yesterday. The sterile scent of the Dr’s office, the way the doctor’s voice trembled just a bit as they delivered the diagnosis. It’s a memory that never fades, a moment that irrevocably alters the course of your life.

We often hear tales of people making grandiose plans and embracing a “live life to the fullest” mentality when faced with a limited time frame. It all sounds so inspiring when it’s someone else’s story, doesn’t it? But let me tell you, it’s an entirely different experience when you’re the one facing that grim reality.

For starters, there’s the crushing weight of uncertainty. Sure, I have five years, but what does that really mean? The questions are relentless, and the answers are elusive. For me, even though I have asked this question before, it wasn’t real then. It was hypothetical. I just don’t know, now that it is a real fucking thing! Every unchecked item feels like a missed opportunity, an unfinished symphony.

So, what would I do with these five years? The truth is, I’m still figuring that out. It’s not as simple as booking a whirlwind world tour or quitting my job to pursue a lifelong passion. It’s about finding balance, about cherishing the ordinary moments just as much as the extraordinary ones.

I’ve come to realize that life isn’t about how many things you can cross off your bucket list or how many adventures you can cram into a short time frame. It’s about savoring the small victories, finding joy in everyday experiences, and making peace with the fact that life, in all its unpredictability, is a precious gift.

First Things First: Your Day Needs to be Specific and Your Attention Deliberate

It would be great to just say “Alright, let’s get right to this “Bucket List”, but so many things need to fall in place first. Not least of which is money, your spouses or significant other’s schedule, opportunity, Drs appointments, but most of all you need to be physically able to do these things. You’re sick! You’re not getting on a plane or waking the cobblestone streets of Italy without assistance, or even navigating a day without getting your meds right and doing the things you need to do to avoid the Emergency Room. My day is so dam scheduled. My lifestyle adjustments are so necessary. Shit, I schedule my shower, my trips to the bathroom, riding my seated bike, when to take my BP, and even my Nap and Lunch. Here’s an example of how scheduled and disciplined you need to be, just to live life comfortably:

• 7am – Meds, Bathroom, & Take BP
• 7am – 8am – Drink 64 ounces of water (and a Chai Tea for me)
• 9am – Bathroom & Take BP
• 9:30am – Take a Shower
• 10am – Ride the Bike (20min)
• 12pm – Lunch (Nutritional & 32 ounces of water)
• 1pm – Meds, Bathroom, & Take BP
• 2:30pm – Ride the Bike (20min)
• 4pm – Nap
• 5:30pm – Bathroom & Take BP
• 8pm – Meds, Bathroom, & Take BP
• 10pm – Bedtime, Bathroom, & BP
• No Caffeine
• No Alcohol *Maybe a lil red wine 😉 (you gotta have something!)
• HYDRATE! Water throughout the day, along with the 2 specific times & amounts
• EXCERSIZE – You have to do this! Whatever you can!
• LOOSE WEIGHT – The extra weight causes so many problems!
• SLEEP – Get your 8 hrs every chance you can. You need the strength
• *For Me – Intermittent Fasting has really helped with my BP (16hrs)

It’s been almost a year to reach this point, where I am “healthy” enough, and my BP is kinda stable, and now I can do some stuff. I’m filling out the calendar with Family & Friends. We bought a Class B Van and plan to travel domestically. Sometimes just 10 miles to Bolsa Chica Beach in Huntington Beach for an overnight on the beach, or 3 hrs north to Central Coast Wine Country in Los Olivos, we have kids in Napa CA and Dallas TX, Temecula Wine Country, wherever and whenever we can spend time with the people we cherish. We also have plans for Italy (Bucket List thing) in July 2024.

Some of you know, I am lucky enough, to be headed for The Mayo Clinic Nov 1^st for a Stem Cell Clinical Trial. It is my hope that the results will change the direction of my illness, but I’m not taking any chances, I’ll be constantly looking for opportunities to make some memories.

• This trip to Mayo will be a Central Focus of this Blog starting Nov 1^st. We will chronicling the experience and tracking the results (or non-results if I end up in the “Placebo Group”. Please pray that I don’t) Until then, I will continue to educate everyone, on the disease itself and how I am navigating it. My hope is that this “open Book” approach will reach the right people and help them “Cope with MSA”.
• I know I said I was going to write about “The Forgotten Faces of MSA”, but it’s turned into a massive subject and I need more time to do it right. Stay tuned for that.