As most of you already know, the majority of MSers (approximately 85%) are stricken with the relapsing-remitting form of the disease (RRMS) which is, of course, no picnic itself. Despite the advent of immunosuppressive drugs that effectively reduce relapse rates and the formation of new lesions in relapsing patients – medicines that carry with them laundry lists of serious and potentially fatal side effects – many of these patients may eventually transition to a progressive form of the disease, known as secondary progressive MS (SPMS). This stage of the disease sees patients no longer experiencing relapses and remissions, but instead a slow and steady decline in physical and mental functioning. Though there are currently over a dozen drugs approved to treat RRMS, there is only one approved to treat SPMS.
A minority of MSers (about 10%-15%) start off with progressive disease. This form of the disease is known as primary progressive MS (PPMS) and is considered the most challenging type of MS to treat. Currently, there is only one approved drug for the treatment of PPMS, and its effect on this debilitating monster is relatively modest, slowing down the progression of disability by about 25% in some patients.
Given this backdrop, it’s high time that the public is made aware of the ugly side of MS, the side which doesn’t have patients Dancing with the Stars or climbing Mount Everest. Progressive MS Day will offer our community a chance to draw attention to this particularly daunting form of MS, and by doing so hopefully draw resources towards treating and ultimately conquering it. Several states are expected to officially recognize Progressive MS Day, along with most MS patient advocacy groups. It is expected that this first Annual Progressive MS Day will grow in scope in years to come, but this year the event will be staged primarily in the virtual world of the Internet. Baby steps, folks, for those of us who can take any steps at all.
Progressive MS Day has been kick-started by the drug company Genentech, which manufactures and markets Ocrevus, the only drug currently approved by the FDA for the treatment of progressive MS. Yes, it’s not like me to do any promotion on behalf of the drug companies, and I have written several lengthy articles on Ocrevus and the issues surrounding it (click here and here). But, just like politics, crippling diseases can make for strange bedfellows, and the idea of a Progressive MS Day seems pretty good to me regardless of where it was conceived. As patients and their loved ones struggling with this illness, let’s take hold of this day and make it our own.
So, what can you do to help spread the word? Well, you can start by using the fancy-schmancy Progressive MS Day Facebook frame on your Facebook profile picture. I must admit, being an avowed Facebook hater, I had no idea what a Facebook frame was, but I just managed to add it to my profile pic and I think it’s quite nifty indeed. Please follow the instructions on the below graphic to add the frame to your own profile pic, and it’ll be like we have all revealed ourselves to be members of one of the least influential secret societies on the planet.
In addition, please use the hashtag #ProgressiveMSDay on your social media posts regarding the event. That way, nefarious groups like the Russian intelligence services and Cambridge Analytica will be able to forever tag you as a person with a crippling illness.
Just to add my own Wheelchair Kamikaze twist to the day, I am requiring, with absolutely no exceptions, that everybody who reads this post compose a Progressive MS haiku and post it in the comments section of this blog or on my Facebook page, if that’s how you reached this blog post. If you cheat and don’t compose a haiku, I swear I will hunt you down, sneak up on you, and when you least expect it shout “Boogie Boogie Boogie” at you. Believe me, writing a Progressive MS Haiku is much more pleasant than having a surprise “Boogie Boogie Boogie” shouted at you. If you don’t believe me, just click on the video below:
For those who have forgotten the rules of writing a haiku, let me refresh your memory. Haiku is a Japanese form of poetry, composed of only three lines. The first line must be five syllables, the second seven syllables, and the final third line 5 syllables again. Easy peasy haiku squeezy. As luck would have it, “Progressive MS” is five syllables and therefore makes for an easy first or third line.
To get you started, here are a few Progressive MS haikus I composed myself. Please use the hashtag #ProgressiveMSHaiku if you post your own poetic creations on Facebook, Instagram, or Twitter.
Stole everything but my soul
You mother f*cker
Enough with the half-assed drugs
I want a damned cure
Stick my head in a blender
And please press purée
Stripped of all pretense
I discovered my essence
Right then, I’m sure you get the idea. Now let’s have at it…