How do you gauge the progression and timeline with PSP? Can something make it worse?
We found it’s so tough to gauge. I thought we had a good gauge but realized after that it didn’t matter, it was the quality of time we had that mattered! No one really knew. We were told many different timelines. (All incorrect)
I have found a few that followed my moms progression, but most I know of have not progressed as fast as my mom did. Goes to show how unpredictable this disease is. My mom went from walking, talking, just occasional falls and no real issues with swallowing or food in late 2018 to passing May 18, 2019. She was still able to swallow but coughed or choked often. Breathing became a problem. She lost most her mobility and sight in less than 6 months. We were not expecting that and thought we had more time.
In my opinion I believe her going under for surgeries progressed the disease faster. That is my opinion but some doctors have now agreed with me. They always told us to get a consultation with the anesthesia before any surgeries. During her last surgery (couple months before she passed away) she crashed on the table and they struggled to get a breathing tube down her due to spasms and loss of muscle. Thankfully they were able to eventually, but it gave a BIG scare. She had to stay over night as her oxygen levels were low. After that they said only life saving surgeries if she required going under. Always get a consultation every time, it can change quickly.
We did a swallowing test early this year 2019 and by May 2019 it had progressed, but she was still eating a modified diet by mouth a day before she passed.
It is so puzzling and different for each person.
Sending Hope and strength to you on this journey and cherish every day and moment.
In the last 8 months with my mom, we became so close! I am grateful for the time I had and was beside her when she passed away peaceful. She fought an amazing battle with dignity and grace.
Sending you strength and support.
See our post on the Four Stages of PSP in a previous blog post!