Wednesday, April 5, 2017

So Much Change

So fast.
Last Thursday Rita, my physical therapist,
told me my shoulders were sore because
my diaphragm was compromised.
She talked about palliative care.

Friday morning, after a massage from Jill
I asked for the ventilator.
Somehow I had success.

I started taking a new drug
named Gabapentin.
I take it three times a day
it helps with neurological pain
but also makes me fatigued.

I have lost the ability to walk
and now I can’t even stand.

I now have on a condom catheter.
I now have a new power chair
which I run with my mouth.
It came on Sunday.

Today for the first time
I was able to pee sitting down in the chair.
Today I received my new eye gaze computer
that Barbara has been setting up.
It’s not ready yet,
but it’s sitting in the living room.

Alex and Julie, Jackson and Bridget,
my brother and sister-in-law and their kids
arrived on Friday night.
They have been such an unbelievable help
as all of this change has been happening.

I’m not sure what’s going to be
when they leave tomorrow.
Last night, Julie stayed up with me
until 5am.
I slept on and off, as did she.

The night before Alex stayed up with me
and he kept a timeline:

11:00 in bed and ventilator for 30 mins
11:45 asleep
12:45 awake for 20 mins. Peed in catheter.
sat up on edge of bed. Laid back down.
1:05pm back asleep.

1:15 awake, can't relax arms. Especially left arm.
Sat up. Drank water.
Rubbed Deep Blue on shoulders, massaged biceps
2:00 back asleep
2:03 awake. Rub feet, adjust covers and pillows
2:15 asleep
217 awake
2:25 asleep
3-15 awake
3:30 Jackie joined, emptied pee bag.
Sat up, lotioned upper body.
415 ventilator start
4:45 ventilator off.

That’s when Alex went to bed
and Jackie took over.

Monday, Alex helped keep my new power chair
working as it fell apart.

On Tuesday, we met at the power chair store
with five people helping me make decisions
as they fixed it and taught me how to use it correctly.

There is so much to learn.

the Morris family visited and Harper gave me this wonderful card



  1. Thinking of you everyday are truly an inspiration!!
    Much love, Michelle

  2. Hello Mark, I just ran into Jackie and she told me about what you have been going through. I want you to know that Heidi, Cameron, Kiley and I are praying for you and thinking of you. Be strong and keep blogging and working with your PT. We love you very much. Jay Wilkins.