[Kathy]

My symptoms started as twitching in my left leg (fall 2020) and then slurred speech (spring 2021). I was an ICU nurse so I knew right away it was ALS. Finally went to PCP that September and a neurologist in November. She was gutless and wouldn’t say so I engaged a second opinion, who was honest and caring to speak truth. I use a brace on my left leg but I eat like a toddler (drool, cough, very small bites of soft food)🤪.  I still drive but fatigue very easily and few people can understand my very slurred speech. Everyday is a challenge but my faith (and husband) hold me up!

[Kathy]

I am so sorry to hear of your loss. And I am sorry you had to experience his struggle. This is a nasty disease with a very difficult path. I pray Gods peace to you and your family!

[Kathy]

I find it very defeating at the every 3 month appointments. The whole purpose is to measure my decline and I’m fully aware of my decline. I also feel like there’s a certain path and they try to push you into things. I really like the Palliative Care doctor but I had to really be firm when refusing an antidepressant.  The respiratory therapist pushed me into an NIV with all kinds of condescending lectures till I finally gave in.  (It’s been sitting by my bed collecting dust!).  I was an ICU nurse  for 15 years and am fully aware of what I’m facing.  To get through I pray because my faith in my Savior is holding me up and afterwards I pig out on Culver’s or KFC!!