Tag Archives: Disability

I’m back. A bit more wobbly. But back.

It’s been more than six months since my last post.  I’ve just been really busy.  But it’s time to dust off the keyboard again.

What’s happened in the last six months?  Not a lot new with my MS, actually.  Just a little more progression with the disability.  The focus has really been on my family and my job.

My MS is still a secret to all but my closest family.  But that secret is getting harder to keep.  I now wobble and stumble quite a bit more.  I am sure that to some onlookers, I must look like I am drunk.  When walking a short distance, such as across the room, I can still hide it ok if I concentrate.  For longer distances, it becomes a little more difficult.  It starts to become obvious that I am not walking in a straight line.  Steps have also gotten a lot harder.  Again, if it’s going up five steps to enter into a building, no problem.  But if it’s hiking up a few flights, it is difficult.  Not impossible.  Just difficult.

I have had a few instances of colleagues commenting on my limp.  I have handled it by lying, claiming an injury.

The disability is not consistent.  There are days that I hop out of bed and feel pretty good.  There are other times where I am dragging my leg behind me like a log.  Fatigue is the biggest factor in how well I walk, by far.  Oddly, standing in place such as in a line, is more fatiguing and affects my walking more than walking itself does.  My theory is that to stand balanced requires many tiny correcting signals from the brain.  When you have MS and the transmission of the signals is challanged, I imagine that the number of corrective signals goes up considerably.  Exhausting.

I am still on Gilenya and tolerating it well.  It is super easy to just pop a pill each morning.  I’m not sure that it is helping, but it is easy.  The next wonder drug on the horizon that my doctor is already mentioning is Ocrelizumab.  The exciting news with this drug is that it’s phase III trials look promising for primary progressive MS, a version of the disease where there is currently no existing approved drug treatment.  They plan on applying for FDA approval early next year.

I adopted a version of the Paleo diet.  The jury is still out, in my opinion, of just how much diet can help you with MS (beyond being healthy in general), but I did shed 23 lbs on it and feel great.  That warrants a post of it’s own.

My plan is the same.  I hope to keep working as long as I can.  Hopefully forever.  As before, that means there is little reason to bring up my affliction with coworkers.  They will pick up on it soon enough.  I work in something of a shark tank.  I don’t need any of the other sharks questioning if I am all there from a cognitive perspective.

I promise not to take another six months to post.  I have a few topics stored in my head to write about so please stand by.