Marianne Has ALS

Husband Guest Post #1

My name is Jacob Henderson. I am Marianne’s husband.  When we started this ordeal Marianne had a very good idea of starting a blog and posting a picture a day.  There are many things that are good and that we SHOULD be doing but we that we are not doing due to lack of time or energy.  ALS is a full time job!  And I have a full time job already so I have two full time jobs, two dogs and an eleven year old son.

Occasionally I will jump in here and write a guest blog.  There are many things I could cover but for my first entry I think it’s best to begin at the beginning.  

Our story begins in June of 2023.  Or maybe we should go back to when we got married in July of 2020?  Or when we met for our first date in March of 2019?  Or maybe we should cover my childhood in California and Marianne’s early years in Indiana and her first marriage?  No, no – this is an ALS blog, let’s start when the symptoms occurred.

Her symptoms started in the summer of 2023 as we were preparing for a family trip to Niagara Falls and Pennsylvania.  She started to lose hand strength in left hand (non-dominant).  Marianne is somewhat of a hypochondriac and she immediately brought up her concerns to me.

“What if my hand grows weaker and weaker and then the rest of my body grows weaker and then I become completely paralyzed?” She asked me.

“That’s impossible and it’s definitely not that.” I replied confidently. “I have pretty extensive medical knowledge from reading wikipedia and I can with one hundred percent certainty it is not that.”

It is very good that Marianne has me around to provide advice and counsel.  And, in any case, we went to our primary care physician and he agreed!

“It’s a pinched disc. I’ve seen this before a bunch of times.  The insurance will make you go to physical therapy and when that doesn’t work they’ll finally authorize an MRI and then we can find out what’s going on and get a surgery going.” He told us nonchalantly during our doctor’s visit.

And so many months later after many sessions of physical therapy and an MRI we were on our way to see a spine doctor in Herriman.  We expected he would look at our charts and order a surgery.  This was February 1st 2024.

“I’m really nervous.” Marianne said to me in the car. “Surgery really scares me.  What if something goes wrong?”

“Hey, look, this is good.  If they can do a surgery that means they know what is wrong and they can fix it. That’s good!”

I was right that surgery would be the preferable option.  Never in my life would I ever have expected to have been so devastated to hear that my wife’s spine looked fine.

“The MRI results show there are no problems at all.” The spinal doctor explained after testing her reflexes and doing his exam. “Her problems are neurological… Why don’t we get her into see a neurologist? Maybe tomorrow?”

A deep pit opened in my stomach and I knew we were on the precipice of something major.  Marianne started to weep as soon as he told us this. He tried to cheer her up.

“Let’s not rush to conclusions. I can definitely tell you its not cancer…”

“My worry isn’t cancer.  My worry is that I have multiple sclerosis or ALS.” Marianne explained between tears.

The spinal doctor took a long pause and then said, “Why don’t we have the neurologist examine this tomorrow?”

The next 24 hours were filled with tears and anxiety.  The world had fallen off its axis. On February 2nd 2024 we had an official diagnosis of ALS.  I’m not really sure how to describe the turmoil, fear and anxiety of the next two weeks following the diagnosis.  It was like nothing I have ever experienced.  

I’m very thankful for the friends and family that rallied behind us.  Truly we would not be able to face this crisis without them.  I’m also very thankful that I have Marianne in my life and all the time we’ve spent together and all of the time we’re going to get to spend together.  I’m lastly very grateful that if Marianne has to go through this awful disease that she has me there to protect her, comfort her and help her every step of the way.  Marianne is truly a beautiful person and I will always be by her side.

I will bring this blog post to a close now.  I had planned to write many of the worries and anxieties I had but if I did this blog post would be ten times longer.  There is a lot to be faced!  Since this diagnosis I have acquired a huge stack of depressing books on ALS, caregiving, grief and theology and I’m slowly working through them.  My next blog post will probably be book reviews.