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Fancy Feast or Friskies?

Dealing with all this MS stuff is weird. Super weird. Super, duper weird.

I'm fortunate enough to be working, although I don't know for how long as this fatigue thing is becoming a real issue. Plus my brain ain't running on all cylinders anymore. I want to keep working. My coworkers appear to want me to keep working. My insurance company wants me to keep working but, ironically, won't pay for my DMT because I'm too old for Ocrevus. The government will pay for it but not for another 4 months.

Evidently the government is willing to take a flier on Ocrevus so that I remain a taxpayer for the foreseeable future. I hope they don't do the math though, cuz yeah, my taxes are not gonna cover that.

Interestingly, according to the tall foreheads at my insurance company, Ocrevus would need to be discounted more than 80% to make it worthwhile for me. Plus, I'm over 55, and it hasn't been tested on a PPMS patient as ancient as I (5😎. Nothing like the cold truth of an actuarial table to quantify your worth.

So, here I sit with a big ole Excel spreadsheet running 'what if' scenarios. Add up our RRSP's, sell our house, liquidate our other stuff and arrive at 'x'. Derive an income stream from 'x' based on 'y' percent return. Add in the government disability stipend, subtract income tax, subtract inflation, and the result is 'Holy-Crap-I'm-Eating-Cat-Food-For-The-Rest-Of-My-Life'.

Oh but wait, there's good news! I can subtract 7 years from my life expectancy because I have PPMS! Awesome! Ooops, wait a minute, my spouse doesn't have PPMS, so she's still going to live to be 84. Subtract a couple years for some chronic illness issues, and she'll make it to 82. I wonder if it's too late for her to take up smoking?

All I know is my cat is gonna be pissed. The only variation in his diet comes from the stuff he mooches from us. So, if we're eating the same thing he is ...

  1. Hi . Your wit and your fluid writing style make a post about such a serious subject an enjoyable read. It's an impossible situation. You have to lose everything to gain very little and with no guarantees that you will really benefit at all. Here is an article from one of our advocates about his experience with Ocrevus and PPMS: I hope this makes you feel better about the potential for Ocrevus to help. He was 54 when he was diagnosed, so I don't understand why your insurance company has deemed you too old for Ocrevus. That might be a battle worth fighting. Have you applied for financial assistance from Ocrevus? I am sure you have checked this out already, but here is their financial assistance page: The upfront cost of Ocrevus is insane. I don't know how anyone pays $68,000 a year of whether they do. I hope you get this figured out in a way that works for you and your family. Thinking of you and wishing you the best. - Lori (Team Member)

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