MS IS A PROGRESSIVE DISEASE

“Progress imposes not only new possibilities for the future but new restrictions.”

 -Norbert Wiener, 20th century American mathematician

prog·ress

1. a movement toward a goal or to a further or higher stage: the progress of a student toward a degree.

2. developmental activity in science, technology, etc., especially with reference to the commercial opportunities created thereby or to the promotion of the material well-being of the public through the goods, techniques, or facilities created.

3. advancement in general.

Progress, digress, regress. Trangress. So many gresses, but the one connected most to me is the first one – you know it, you love it: progress, progression, as in “I have MS, a progressive disease.” Most of my life I’ve been taught to associate progress with positive developments. The Pilgrim’s Progress was the first one. In Amazon, if you search books for progress, the first title to come up is The Progress Principle: Using Small Wins to Ignite Joy, Engagement, and Creativity at Work, very positive indeed. And as you can see, the majority of the definitions above are innovative and forward thinking. How sad then for such an upbeat word to take on such negative connotations in the context of our health and well-being. “Your disease is progressing.” Even if the words are never uttered by your doctor, they are floating in the air like a pink elephant in the room.

It all gets so confusing. When I was a child, my mom would say I was regressing whenever I acted younger than I actually was. (Occasionally, I still behave that way and it’s my wife telling me I’m regressing – some things never change.) The point is, I was going backward instead of forward. Progression was a good thing. I was supposed to be acting more mature. Too bad, then, that this word holds such negative implications for us MSers.

Now I sit here looking out the window from the seventh floor of my 15th Street apartment overlooking Third Avenue here in New York City. The view south is now partially obstructed by two ugly luxury high-rise buildings that were erected over the last few years. You can’t stop progress, right?  Though, truthfully, I guess you could move to a different neighborhood, even a state, where buildings do not block your view.

Wouldn’t it be great if, as MS progresses, you could just move to adjust your perspective of the disease?  Not functioning particularly well today? Balance a little off? Move to Brooklyn, overlooking Prospect Park! You’ll get a clearer view of your disease,you’re your overall quality of life will improve. That’s progress.

And so I dream. And in lieu of changing my location to improve my quality of life or functionality, I take the only legitimate action I have available to me: I consume prescription drugs and lots of them. I bring this up now because for the first time in my storied MS life, the insurance company had the audacity to reject a request for I’ve been told is the next best drug option, Rituxan. This after we halted Tysabri following about a year and a half and PML concerns.  Six months of applications and appeals all to get the middle finger. Happy days. Thank you insurance company, thank you state appeals process – for nothing!

Now I am off Tysabri and back on Avonex as the progression continues. Even if I can’t actually feel it, there’s usually something going on in my brain or on my spine. Because I completely trust my doctor, I’ve also added a drug he recommended, something called Mycophenolate, designed to help prevent transplant organ rejection. I realize I don’t have an transplant organ (good news for me!), but whatever works for MS, right? If I were an optimistic individual, I’d say the cocktail of meds I take every day is having a beneficial effect and is at least slowing down the - wait for it, here it comes – progression of my disease.

I hope wherever you are, your progression is slowing too. If you’ve found a way to stop it altogether, please let me know.

Have a great couple of weeks. Stay cool!

Peace,

Marc

marc@empirelifecoaching.com

914-715-9496