At the ALS clinic 05-17-17

Rod Fluth

First post: Mar 20, 2017 Latest post: Jul 3, 2017
Thanks for visiting Rod's CaringBridge site.  We will be using CaringBridge to take you through our journey with ALS.  Here's how the story begins:

On February 21, 2017 our dad was admitted to the hospital because he was running a fever and was constantly disoriented.  Upon admission, they found that he had pneumonia and sepsis (and suspected other infections) so they began all sorts of antibiotics to treat him.  He continued to decline but his symptoms weren’t explained by infection(s).  He degraded to the point of needing a ventilator and heavy sedation so he was moved to the ICU.  They began testing to rule out all kinds of ailments but he remained a mystery.  He woke up after 5 or 6 days on the ventilator and during a routine doctor visit we asked if they could test him for ALS.  My mom and sisters have been pleading with the doctors to test him for around 18 months previously but to no avail.  This time they seemed to give it a shot.  He started the series of tests the following morning and they stopped after the first couple as he was overwhelmingly positive right away.  My dad has ALS.  Although our family already knew it and talked about it, it stings just to hear it or say it.

 We did our best to digest it over a weekend before starting in on all kinds of meetings with hospital personnel on how to cope, how to treat, and how to live.  Dad chose to pursue aggressive therapies to slow the progression of ALS and hopefully extend his time with us.  He was moved to a doctor who specializes in ALS and she recommended going through a tailored rehab program at Select Specialty Hospital in the hopes of being able to have Dad return home.  Ultimately, he will need a higher level of care but he wants to try to make it home for a while yet.  He would require home health support, but the rehab program also requires his family caregivers to partake in therapy so we will also be trained to handle his day-to-day needs.  We don’t even know the likelihood of reaching his goal, but we have hope.

We know he has lost his ability to swallow so a permanent feeding tube was inserted so he can receive nourishment.  It is no equal to food with different tastes and textures, but we are glad he was able to have it placed as it will afford him more options for care and presumably extend his life.  He really craves a drink of something but even a sip goes straight to his lungs and could easily turn into pneumonia again (which could be fatal).  I can only imagine how tough it would be but he’s working on it.

His speech has deteriorated severely but we can usually make out what he says if we are sitting by him.  The telephone can be quite challenging, but we are hoping to benefit from some communication tools provided for by the ALS Association.  We know his speech will continue to decline and we are trying to stay one step ahead. 

During the rehab program, they are assessing him to see how much of his arm and leg functions remain.  It is tough to tell when you have spent 3 weeks in a hospital bed!  He is enjoying his time in the wheelchair visiting the neighbors.

One thing that seems to be well in tact is his mind.  This is a blessing as not everyone with ALS stays this sharp!  He still tells stories and jokes—even chews us out periodically.  He reads his messages on Facebook, as he will with Caring Bridge, but it takes him a while to respond.  He also enjoys the visits he gets at the hospital so if you have a few minutes to stop by I know he would treasure it.  His special request is that if he is sleeping when you visit, please wake him up.

It is easy to see the pain or sadness in this miserable, hopeless disease.  However, there are equally as many blessings in his diagnosis.  First, we have stuck together like glue!  ALS will not get the best of this family.  We also have the gift of having time together to talk about the important things—as well as a focus.  We don’t know exactly how much time we have left with our dad, but we know God has a plan for him (and for us) and we are open to that plan.  


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