Being as I’m the type to do lots of medical research (diagnosing myself with Cushing’s Disease before the internet for example), I have amassed quite a collection of links, infographics, videos and so on and I’ll try to share some of the more useful ones here.
I also kept a very detailed spreadsheet to help us get to this NPH diagnosis. Every symptom no matter how “small” test, reaction, appointment – it’s all there and I bring the updated version to every appointment.
This is a really good video we just saw that helps to explain the shunt surgery:
The surgeon had set us up with a couple appointments this week: An APP Eval In-Person (stands for Advanced Practice Provider Evaluation). Then a head CT Scan to be sure of proper shunt placement. No problem – hospital complex is close by, we can do this.
So, today, I dropped him off in building 3700 and went to park the car. Of course, I had to go the back parking lot, as far away as possible. According to my Apple watch, I walked .44 miles to get to 3700 for his APP evaluation. That appointment went on way longer than I planned for. The evaluator wasn’t happy about a lot of things – COPD, Blood Pressure, non-compliance with cardiologist/BP meds.
So, she was thinking a new cardiologist, pulmonologist… all before surgery on the 19th. In the meantime, there would be a walk-in X-ray of the lungs at the hospital in building 3600. That would be easily walkable for me but not DH. So, I walked back to my car in the back parking lot, picked him up at 3700, drove him to 3600 and dropped him off, Then, I drove to the back parking lot and parked almost where I was before.
My Apple watch is loving this – I walked to the hospital in building 3600 and found him waiting for the chest xray. He finally got that done so I hiked back to my car and drove back to pick him up. It was now about 12:30 and he said “Let’s get breakfast!”. Um, no. I have to go to work still.
Dropped him back home and headed to the office. About an hour later, Elizabeth from the APP called and said she was setting up a cardiologist appointment. Was I ok driving a distance. Sure, why not? She called around and scheduled us for an appointment on Monday, October 12 (supposedly a holiday) only half an hour from home.
Depending on how today’s X-rays went, Friday’s CT scan and the new cardiologist on Monday – maybe surgery will still be a go on October 19.
PS! On the way to work, I was waiting at a light and a beautiful monarch butterfly landed on my windshield. He waited for a few seconds before flying but ht gave me hope that all will be well.
I don’t know where to begin. Sometime in August 2025 DH was hit in the head by a lightning strike while mowing the lawn. Related?
January of 2026 the memory issues started. Then the walking, the falling, the request for incontinence pads. I kept a spreadsheet starting with the lightning strike.
Things were lost, he was lost, traveling overseas, coming home early, on a cruise thinking we were staying in a land hotel. Just aging in general. Or was it?
Many tests and many doctors later we have a diagnosis:
I had heard of hydrocephalus before but not as an adult thing. Somewhere along the line I asked a nurse how it can be “normal” and cause so much trouble? She said “it’s because the pressure of the cerebrospinal fluid inside the skull stays within the normal range during testing, even though there is an abnormal buildup of fluid.” Ok then.
In a couple weeks – after a few more tests – there will be a shunt implanted from his head to his abdomen. At first, he said no way but has come to see the wisdom of his ways.
My ChatGPT friend made this for me to share:
So…please wish us luck in this new season of life!
