A bit about Mr. Jenson and the cough assist

You need background information to truly appreciate where I am coming from as I try to explain this video caring for Jonathan.  This good man worked as a nurse anesthetist for over 9 years prior to being diagnosed with ALS.  The 7 years prior to that he was a registered nurse spending many of those years working in a critical care ICU.  If you go back again he was a CNA in a nursing home.  And if you care to go even a tad farther, he spent his growing up years caring for his aging grandmother in his home.  He’s been around the block.

If you don’t know what a nurse anesthetist is, it is the person that gives you labor epidurals (handy for a lady with 7 kids 😉) and puts you to sleep for surgery.  In the states he practiced anesthesia, he was an autonomous provider.  In several hospitals he worked at in Iowa he was the only anesthesia provider that would service the entire hospital.  Due to his high level of autonomy Jonathan became very adept at anesthesia.  He was good at it and very, very confident.  As an anesthetist, his sole responsibility was to take people as close to death as possible without actually letting them die, and then bring them back to life as if nothing had happened post surgery.  And how is such fancy footwork accomplished?  Airway management.  The man spent his professional career shoving things down people’s throats, masking them, keeping their airways active and making it seem normal.

Please keep this in mind as you realize I am a brilliant woman, but for the past 16 years my career path has been entirely focused on the business of manufacturing.  Children.  For a living.  As in a professional child manufacturer.  Job descriptions include stirring macaroni and cheese, wiping bums, and driving places.  No where at any point in my aforementioned career has airway management been a required qualification.

So when Jonathan tries to teach me something it can get a bit ugly at times.  He has mastered the art of airways and I am still trying to figure out what every machine is used for.  Our synergistic powers are like pickle and jelly sandwiches.  He has absolutely no use of his hands and nearly as limited use of speech and a perfect knowledge of how to manage airways.  I have perfect hands, perfect speech, but am the dumbest human on earth when it comes to how to use any assistive devices.  And we are trying to effectively communicate FINITE DETAILS. Learning to use the cough assist has been REALLY REALLY hard for me.  Jonathan knows not just how to do things, but do them well.  And expects it, because he knows it is possible.  I give and give and give my best effort but I have no idea what “ideal” looks like.  I have zero frame of reference.  This machine has made me grumpy.  It has made him grumpy.

But, if there is one thing you should also know about Mr. Jenson it is that he doesn’t stop until something is done well.  (Ask me about framing our basement some time.) And so we have kept trying.  We have altered our groove.  We are gone after it.  We have wanted to drop kick the machine and each other into the neighbor’s yard at times.

Every neurologist and pulmonologist has preached the importance of the cough assist.  EVERY single one of them has warned that this machine alone will keep ALS patients out of the hospital more than any other.  It is imperative that we use it.  Jonathan’s lung function is at 30% so risk of respiratory infection ever creeps upward.  The cough assist is something we have to embrace and keep after. Multiple times a day.

And so, if it can be of any help to my ALS tribe I want to share with you what we have decided works for us.  At least for now.  ALS is always changing and we will have to adapt as the disease progresses.  This was helpful for us, but like I have mentioned before, you have to do what works for YOU.  You have to do what is right in your situation, but if you have ALS it is kind of important at some point to figure this bad boy out.  Working together as husband and wife to master the cough assist has been an arduous task.  BUT it is an ugly ride I wouldn’t change for the world.  It is piece of bedrock that is another layer to our story.  It is yet again another witness to me that God intends for us to become one.  We are not in this for time, but we are laying the foundation for our eternity.

PS-  I forgot to mention in the video to hold the mask from behind.  You get a better seal.  The noise from the suction machine doesn’t allow you to hear his cough, but it is there.  Also, in the video Jonathan’s lungs were mostly clear, which is awesome.   During a typical treatment there can be far more retching and nasty secretions.  It can get crazy gross.  I have stimulated my own gag reflex several times as the bystander.  I’m serious when I say the cough assist is true love ❤️