Sunday, March 25, 2018

First Annual Progressive MS Day – Wednesday, March 28, 2018

Okay, all of my fellow progressive MSers, we finally have a day to call our own! This Wednesday, March 28, 2018, will be the first ever Progressive MS Day, a time to draw the world’s attention to this most debilitating form of the scourge that is multiple sclerosis.

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.

Haiku #1
Progressive MS
Stole everything but my soul
You mother f*cker


Haiku #2
Progressive MS
Enough with the half-assed drugs
I want a damned cure


Haiku #3
Progressive MS
Stick my head in a blender
And please press purée


Haiku #4
Stripped of all pretense
I discovered my essence
Progressive MS

Right then, I’m sure you get the idea. Now let’s have at it…

52 comments:

  1. Neurological
    Disease, NOT effectively
    Treated, yields little real hope

    ReplyDelete
  2. Progressive MS
    That creeping paralysis
    That knows no stopping

    ReplyDelete
  3. Progressive MS
    That creeping paralysis
    Destroys and destroys

    ReplyDelete
  4. Legs went in 2014
    Now my arms are failing
    Progressive MS

    ReplyDelete
  5. Progressive MS
    Freaking Ocrevus hurray??
    We need more choices!

    ReplyDelete
  6. The Black Swan we are waiting for?: http://www.geneuro.com/data/news/geneuro-pr-positive-12m-results-change-ms-en.pdf

    ReplyDelete
  7. Progressive MS,
    inexorably destroys,
    smoldering always.

    Life’s plans up in smoke,
    we struggle to compensate.
    We sputter and curse.

    Without solutions,
    our capacities decline.
    Frustration may reign.

    ReplyDelete
  8. Progressive MS
    Now takes my independence
    We need a cure now

    ReplyDelete
  9. My legs feel like Gelatin
    Hoping for a cool Exoskeleton
    #Progressive MS

    ReplyDelete
  10. Progressive MS
    Step by haltered hindered step
    I feel powerless

    ReplyDelete
  11. Once invisible
    True; now spastic and fatigued
    Weak and dependent

    ReplyDelete
  12. MS KISS MY ASS
    ONE CHEEK AT A TIME AND THEN
    KISS IT AGAIN AND.....

    ReplyDelete
  13. Angry, not me, but
    Furious times ten times ten
    Times ten times ten times..

    ReplyDelete
  14. Me, Benign at first
    Ten years later - start going
    Downhill fast, you f*ck

    ReplyDelete
  15. Take this gift and Re
    Turn it to whomever you
    Wish no questions asked

    ReplyDelete
  16. Progressive MS
    Thank you for the permission
    To vent, to cry, to...

    ReplyDelete
  17. Progressive MS
    Thirty plus years of creeping
    Hideous decline

    ReplyDelete
  18. Progressive MS
    Look on the bright side of Life
    I'm alive, thank you

    ReplyDelete
  19. Progressive MS
    My brain is rotting away
    Who needs gray matter?

    ReplyDelete
  20. Progressive MS
    Took my mom from me too soon
    Time to find a cure

    ReplyDelete
  21. Progressive MS
    Demons attacking myelin
    Disappearing me

    ReplyDelete
  22. Endless war is waged
    In an MS body that
    No longer moves well

    ReplyDelete
  23. We get worse with time
    Neuro science still lacking
    Nothing slows our course

    ReplyDelete
  24. Disease mystery
    Still uncovered, not exposed
    Light is sorely needed

    ReplyDelete
  25. Quality of life
    Is remarkably altered
    As myelin fails

    ReplyDelete
  26. Progressive MS
    Thief by night and day
    Attacks in shameless silence

    ReplyDelete
  27. progressive MS
    changes everyone life
    hate it


    ReplyDelete
  28. Simple errand run
    Drove with purpose, lefts and rights
    Now how to get home

    ReplyDelete
  29. Spinning wheels give grace
    Perfect turn, feel the balance
    Carve the next as one

    ReplyDelete
  30. Progressive MS
    Parks me, not always enough
    Brain to navigate

    ReplyDelete
  31. Ignorance is bliss
    Pricey lessons learned too late
    S.N.A.F.U.

    ReplyDelete
  32. Progressive MS
    I lose too many battles
    I won't lose the war

    Mike in Sarasota

    ReplyDelete
  33. You stole my body
    You gave me a new purpose
    PPMS curse

    ReplyDelete
  34. Thanks everybody for the terrific responses and moving haiku‘s. Reading all of the above, you can sense the common elements of frustration, anger, disappointment, and heartbreak. With a little healthy defiance and hope thrown in. My most fervent wish is that none of us would have found ourselves in a position to write these from personal experience. We play the cards that are dealt us, though, as best we can…

    ReplyDelete
  35. Neurological
    Disease targeted wrong
    person, I’m beyond

    ReplyDelete
  36. What is it you want?
    To feel normal again, please
    Never-ending pain

    Progressive MS
    Has taken everything
    I hate my illness

    Progressive MS
    Is a big pile of shit
    Time for a cure now

    ReplyDelete
  37. My doctor called
    it "relentless"
    Progressive MS

    ReplyDelete
  38. Progressive MS
    Hate you. Still, I think, There’s
    always tomorrow…

    ReplyDelete
  39. MS I hate you
    You have ruined my husband's life
    And my life as well

    ReplyDelete
  40. Hey,
    I would be very happy about an article from you, were you advice newly diagnosed (and unfortunatly very young) people with PPMS; what needs to be known about it,treatment options available (not too many I know, but maybe also unconventional things and life style changes) and just how to best cope with it without loosing hope.

    Ah before I forget, here my haiku

    Progressive MS
    Away went my dreams of life
    What is still left now?

    Mimi

    ReplyDelete
  41. Progressive MS
    Hoping for a miracle
    Butterfly's journey

    ReplyDelete
  42. Progressive MS
    No comparison, it is
    A fate worse than Trump

    ReplyDelete
  43. Perhaps my fate too,
    if unlucky. Already
    accustomed to loss.

    ReplyDelete
  44. An expedition
    Onward we go through Artic
    Cold, Dark Nights, Fear, Dread

    ReplyDelete
  45. Courageous Hopeful
    Unknown unpredictable
    Blind faith Have Mercy

    ReplyDelete
  46. Someone said don't give
    Up, I say easy for you
    To say, I'm melting

    ReplyDelete
  47. Legs don't respond like
    Tree trunks embedded in ce
    Ment, Blast me free, PLEASE

    ReplyDelete
  48. Can't walk, shit or pee
    Take my brain, too and eyesight
    Why not give in ? Why..

    ReplyDelete
  49. Perky PR fluff
    Penned by MS-free people
    Is quite strange to read

    ReplyDelete
  50. Slow creeping decline
    Clench fists grit teeth close eyes scream
    Progressive MS

    ReplyDelete
  51. I Haiku to vent
    Unmask reveal shadow side
    Of calm smiling man

    ReplyDelete
  52. I sing to free my
    Spirit from the physical
    MS Challenges

    ReplyDelete