My husband and I were both English teachers. He is 11 years older than me and retired in 2014, a year after having five stents put in his heart. I took early retirement in 2017, a month before he was diagnosed with PSP.
I started noticing cognitive symptoms on a trip to Ireland in 2012. The years that I worked and he didn't, I was convinced that he just drank beer all day. Now I know that what I saw were symptoms of PSP: unsteady gait, slurred speech, slow mental processing time, forgetfulness, and "fuzzy" thought processes.
My husband was diagnosed by his ophthalmologist, who noticed the PSP vertical gaze. Besides not being able to see when he looks down, my husband's symptoms include continually watering eyes, difficulty swallowing, coughing and choking when eating and drinking (he's had aspiration pneumonia once), severe mobility issues, fatigue, and apathy.
We see a neurologist who specializes in PSP, but we can only get appointments every 18 months or so. My husband's cardiologist and pulmonologist have been much more helpful and supportive.
We have contacted a palliative care center because we want someone to check my husband's lungs and heart regularly. We live about an hour from the city where the doctors are. Also, I will soon need help moving my husband. He uses a scooter, but he still has to transfer to the bed, toilet, shower, etc.
We are very fortunate to have supportive families who live close to us. However, we have stopped going to many family gatherings because it's just too exhausting for my husband and, frankly, for me.
I'm not a very social person--neither of us is--so I don't typically interact much on social media such as this. I do read posts and do a lot of research online. I appreciate having Health Unlocked as a resource.