Thursday, June 13, 2013 -- MS Clinic Today

I just got home at 4:30pm from my 11:00am appointment with the MS Clinic at University Hospital, London.  A couple of weeks ago they scared me badly when they told me I may not even qualify for government funding for the latest medication.  I was told that you have to be in decent condition to qualify as the medications do not work if the MS has progressed too far.  The medication costs around $35,000 per year and the government is very particular about who gets sponsored, they don't want I guess to waste funds or effort on really sick folks.  Kind of reminds me of being married... for better or worse only we don't want the worst to be too bad.

Well, today, much better news.  They are applying to get me funded on TECFIDERA.  This med is so new that it is approved, but not yet for funding... but it seems the MS Clinic folks can make it happen.  It is weird to be so encouraged by this, a med that will mess with your immune system, but make it longer between MS relapses, which they figure I was having the past couple of months.  They were scared that my relapsing/remitting MS was graduating to a steady progressive type.

Today I could walk with a walker a long way.  I could barely make it 5 feet a couple of weeks ago.  For one examination I had to remove my running shoes (velcro) and was unable to get the left shoe off last time.  Today I whipped both shoes off and put them back on again.  Two weeks ago I could read only the first 5 lines of text in the vision test.  Today I could read everything.

I have now a motorized wheelchair and I am sitting in it right now at my desk.  My victories nowadays are little things like today and the wheelchair.  I have MS.  I will never walk unaided again or play baseball or golf.  I lost a marriage due to MS.  But it all comes into good light when I hold Aria, my new granddaughter.

I promise.