Wednesday, January 8, 2014

Oh, and

Two other things occurred to me about personal milestones from last year.

I should have mentioned that Amanda and I started visiting a counselor to talk about everything that's going on. There wasn't a particular event that triggered the decision to seek counselling. The time just felt right. We are still in the late stages of our honeymoon period with our counselor - we mutually agreed to ensure we're a good fit before going full steam ahead. I'm happy with everything so far, and I'm glad we're going.

In the spirit of full disclosure, I thought I should also give an update on my health and medication. The medicine list is long, but fairly simple to cover:

  • Rilutek for ALS
  • Prozac for depression
  • Dronabinol to enhance my appetite
  • Neudexta for emotional lability
  • Xanax for anxiety
  • Advair for asthma
  • Rubinol to suppress excess saliva

In terms of my symptoms, I alluded to some of them in my last post, but I'll try to be more specific.

My weight has stayed much the same for the past year. Usually just over 200lbs. Dramatic weight loss is a huge red flag for pALS. I must give some credit to Dronabinol, which increases my appetite. The rest of it is thanks to Amanda, who feeds me at all hours of the day, and has reached an advanced level of expertise when it comes time to move my heavy, weak frame around.

My breathing function has declined. I don't have numbers at hand to back that up, but anecdotal evidence tells enough. I can gently bike for three miles without too much stress, but I feel like I have to heave my chest if Cora or Louise start wrestling on me.

Physically, I require help to stand, sit, walk, or lay down. Seated, I can push my elbows out and back along arm rests. I can move my fingers and hands with very limited range.

I am dangerously unsteady on my feet. I no longer have the ability to quickly correct myself when I'm off balance. Wheelchair time for me.

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