Tuesday, August 19th, Day 6

LLast night went well. Everyone slept, well for the most part, it took all of us a little bit to get to sleep. Rounds this morning went as we expected...they are decreasing his pressure support back to 6 (this is his baseline and will make all of his vent settings back to baseline). He will get his trache changed from the cuffed one they had to put in last week to his regular uncuffed one. This will put everything back to normal and he will be back to baseline with everything. The hospital will begin making plans for discharge which we are looking at for tomorrow. So the day has gone as planned and a good night will ensure discharge tomorrow. 

I have done a lot of thinking lately about how it is for Ian living with his disease. To try to understand his frustration as I know we get frustrated with it...I came across a blog a wife wrote about her husband living with ALS...as living with any form of SMA is just like it. 

What is it like to live with ALS? 

 It’s a brave question because the answers are not very pleasant. But it’s also such a worthy question because understanding how this disease impacts those who suffer from it creates empathy which is so valuable; it carries us into another person’s world and allows us to understand what they’re feeling and how they’re hurting. As caregivers watch their loved ones struggle with things that used to be easy and automatic, or as we watch others do those things sometimes I wish that everyone could see life from his perspective.

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If you would like to experience just a tiny corner of an ALS life, I have a list of empathetic experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

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1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day. 

+This post originally appeared at bostern.com. We welcome your comments atideas@qz.com.

Take a look compare SMA and ALS...it really is amazing.