Friday, February 18, 2011

...and now I'm outing myself

I've been dabbling in this blogging world for several months now, at first as an anonymous avenue for me to vent frustrations and concerns.  Now, with diagnosis for my handsome husband and life changes required by that, it's time to become real.  My handsome husband is Art, the man for whom I waited far too long, the man I love with my whole heart, the man I can't imagine not having in my life.   He has just been diagnosed with Primary Progressive Multiple Sclerosis (PPMS).  We are dealing with this and I'm struggling with patience.  (really?  Me?  Impatient?)

Doctors and researchers tell us we need to move, for Art's health largely, to a plant based diet.  What does that mean?  I'm thinking it's essentially a vegan lifestyle.  Not that we are philosophically opposed to eating meat - I  love veal, remember - so I am reluctant to refer to us as vegan.  I prefer to think of this as simply a plant-based diet - and not a diet as in "I'm on a diet this week."  This will become our chosen lifestyle.  (Can you tell I'm trying to talk myself into this?).  I asked people for suggestions and received some of the most random, poorly thought out responses, thing like, "oh just wrap your vegetables in lettuce leaves.  You'll never miss meat."  (No, wait.  I'm not going to complain for this is a no-whining zone.) 

That's part of the reason I'm going public with my heretofore private blog; I need help and support in this lifestyle change.  I'm asking people for suggestions/recipes/mindset changes to adopt and adapt to this meatless menu plan.  I'm also looking for support as I deal with this terrible disease ravaging my husband's body - and now his spirit.  He made the comment last night he'd shared with his partners and associates that he won't be around long.  MS, while it won't kill him directly, WILL shorten his life expectancy by 5 - 11 years,  (I don't  know who establishes these figures; they're on the MS website.)  Depression and suicide, however, are a big factor in the shortened lifespan of an MS patient.  Sad.

There are effective treatments out there for MS sufferers, however, not for people with PPMS.  What that means is that he'll just continue to decline.  We're very fortunate though, because of the PPMS, the MS Clinic at OHSU has accepted Art in their program.  As a teaching and research hospital, his treatment team is on the cutting edge of this disease.  Art's physician (a scary-smart woman) has applied for, and he's been approved for, a medication that may improve his function.  We're waiting now to see what the insurance company says; without insurance the medication would run about $30,000 a year.  He's been prescribed Ampyra which has been shown to improve walking ability in patients.  Again, here we wait for insurance approval.   The insurance is more likely to approve Ampyra as it's shown to help restore walking function.  The whole notion of the insurance company pretending to be educated and second-guessing his doctors makes me want to move to Canada...but that's the subject of another post, I'm sure.

So, despite my gray outlook, there is good news out there.  I  just need reminders and encouragement.  And recipes.  I need to find a way to convince my handsome husband, reared in Montana by North Dakota-bred farmers, that MEAT (read: beef) doesn't need to be part of every meal. 

And so I repeat my plea:  recipes, please.

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