My father was diagnosed with PSP about 4 years ago, I am posting these photos to show how this horrible disease took my father & how I am supporting myself / him / my mother through this.

Over the past four years, his health rapidly declined, he was unable to walk or drive by himself within the first two years of effect.  It spent a lot of time getting him the correct diagnosis, so we went through countless medications and doctors and consults till we found an answer.

Up until about 3 weeks ago- my dad was living at home, with a home health aid & my mother. He needs assistance for most of his ADLs, but is able to understand conversation & remain engaged. His speech has also declined where he struggles to find the word, or have the strength to get it out. But we have learned ways to communicate by hand squeezing & thumbs up when he’s not up to talking.

About 3 weeks ago my dad fell and broke his hip, he has been in the hospital now with no plan for a discharge in sight. He is receiving PT & great care in the hospital, but they have a much different gauge of my dad’s life expectancy than we did before he was admitted.

The doctors are adamant he should not be eating or drinking by himself as it increases aspiration risk. While we’ve always known this, we had him evaluated by a speech doctor who agreed he could still eat solid food, but needed a liquid diet.

The hospital refused to comply with this unless we signed a DNR because they believe he should not be eating anything manually. Eventually we were able to speak to the head of patient care who helped us advocate for a feeding tube in the mean time I till we figure out his eating situation.

Very sad and upsetting time .. everyday is a mystery.. but also everyday he can still smile and enjoy our company is a plus as well 🤍 

Open to any questions regarding the decline of my father or PSP care in general 


update on my father