My ALS by the Numbers

20 – It takes approximately 20 minutes for me to get out of bed every morning. I know what you’re thinking, “Me too, after I hit snooze a couple of times.” But it literally takes 20 minutes from the time my caregiver walks into the room to the point where I am vertical, in my wheelchair. After not moving a single muscle for 9 hours it takes some stretching to get the blood flowing. Then it’s time to take off my AVAP (a machine, similar to a CPAP) mask, that I have to wear when I sleep to help me breathe. Once that mask is off, my eyes and face get a warm wash cloth wipe to get rid of all the nighttime crusties. Sexy, I know! Then, finally, a scoop and a pivot, and a hoist, and a plop into the chair, and I am up.

1 – I am still able to drink, so I NEED at least one cup of coffee every morning. I’m a Dunkin’ Donuts man.

2 – It’s no coincidence that number two follows that number 1 morning cup of Joe. It takes two people to make my morning constitutional possible. One person to help me stand and pivot, while the other pulls down my pants.

500,000 – A Life Story Foundation has raised over $500,000 since it’s inception, for research and awareness for ALS.

45 – This one is an estimate. I use a suction machine,similar to the one at the dentist office, only it’s relatively small but obnoxiously loud. I need suction 45 times throughout the day. It’s not that I produce so much excess saliva, it’s that I’m unable to involuntarily swallow as much as the average person.

10,000 – This is my yearly out of pocket cost for prescriptions and respiratory devices after insurance. In addition to the before-mentioned AVAP and suction machine, I have a cough assist machine. As you might have guessed, it helps me cough by forcing air into AND out of my lungs.

5 – I used to be borderline obsessed with food. Not in an unhealthy, obese kind of way, I simply loved food and took as much joy out of a perfectly cooked, greasy cheese burger as I did a 10 course tasting at a NYC restaurant. But now I eat about 5 smoothies (the medical community calls them feeds, but I call them smoothies… After all, I’m not farm animal!) through my feeding tube.

162 – This has little to do with ALS, but I love watching the Chicago Cubs play, and they play 162 games. So, that’s nice.

7 – ALS can be an unruly, isolating disease. I could easily see not wanting to ever leave the house for every reason from physical challenges to emotional stresses, However, that’s not me. Not only do I enjoy getting out of the house, I use my Surface Pro 3, equipped with Tobii technology and controlled with my eyes, to text at least 7 people a day. It feels great being able to touch base with friends and family and maintain the relationships and get beyond what I see on Facebook and Instagram.

3 – Vivian, the most kind and loving 10 year old on the planet, nicknamed Fruit Cup for the massive amounts of fruits and veggies she eats daily. Cullen, the walking music and sports almanac who has reached 15 years old and genuinely still likes hanging out with me and his mom. Elizabeth, although she’s Betsy to me. She’s all heart and definitely has mine. She is the only person who can physically make me laugh out loud. The three of them are why all the other numbers don’t matter.

Posted on May 24, 2016 at 10:05 pm

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